That is how my husband as described my expansion progression. And it is a fairly accurate description! I do look like someone has taken two bocce balls and neatly tucked them under my skin. To me, however, weight wise, they feel a bit more like cannon balls!
I am getting close now to my reconstructive surgery date, which is Monday, November 22, 2010. The preop jitters are starting to set in and the fact that my surgery isn't until 3:30 in the afternoon really doesn't help!
I will be glad to have this medical chapter over with......
Saturday, November 20, 2010
Sunday, November 7, 2010
Legislation and the insurance companies
I did a little research and found out the following:
In 1998, a law was passed in the USA that now forces insurance companies to pay for any type of reconstructive surgery after a mastectomy. The law also stipulates that the insurance company has to pay for a bilateral mastectomy (both sides) should that be the patient's decision.
Prior to 1998, patient's usually opted for a lumpectomy followed by radiation therapy because it was the most economical way to go for treatment of early stage breast cancer.
Also, states are now mandating insurance plans to STOP the "drive-through" mastectomy....where patient's are basically considered out-patient and discharged ASAP.
This is good information to know. There are options out there. It's a decision that you and your surgeon decide together, and your insurance company cannot dictate what you can and cannot have done :)
In 1998, a law was passed in the USA that now forces insurance companies to pay for any type of reconstructive surgery after a mastectomy. The law also stipulates that the insurance company has to pay for a bilateral mastectomy (both sides) should that be the patient's decision.
Prior to 1998, patient's usually opted for a lumpectomy followed by radiation therapy because it was the most economical way to go for treatment of early stage breast cancer.
Also, states are now mandating insurance plans to STOP the "drive-through" mastectomy....where patient's are basically considered out-patient and discharged ASAP.
This is good information to know. There are options out there. It's a decision that you and your surgeon decide together, and your insurance company cannot dictate what you can and cannot have done :)
Saturday, November 6, 2010
ONE in EIGHT
I wanted to share the following info with you. I copied and pasted it directly from the BREASTCANCER.ORG website. I didn't want to get any of these stats wrong, hopefully the website won't mind that I "borrowed" the info! This website has been extremely important, informative, and a place to reach out to other women living with breast cancer. The time to read this is BEFORE you or a friend or family member is diagnosed. The more you know....is a good thing :)
About 1 in 8 women in the United States (between 12 and 13%) will develop invasive breast cancer over the course of her lifetime.
In 2010, an estimated 207,090 new cases of invasive breast cancer are expected to be diagnosed in women in the U.S., along with 54,010 new cases of non-invasive (in situ) breast cancer.
About 1,970 new cases of invasive breast cancer will be diagnosed in men in 2010. Less than 1% of all new breast cancer cases occur in men.
From 1999 to 2006, breast cancer incidence rates in the U.S. decreased by about 2% per year. One theory is that this decrease was partially due to the reduced use of hormone replacement therapy (HRT) by women after the results of a large study called the Women’s Health Initiative were published in 2002. These results suggested a connection between HRT and increased breast cancer risk.
About 39,840 women in the U.S. are expected to die in 2010 from breast cancer, though death rates have been decreasing since 1991. These decreases are thought to be the result of treatment advances, earlier detection through screening, and increased awareness.
For women in the U.S., breast cancer death rates are higher than those for any other cancer, besides lung cancer.
Besides skin cancer, breast cancer is the most commonly diagnosed cancer among U.S. women. More than 1 in 4 cancers in women (about 28%) are breast cancer.
Compared to African American women, white women are slightly more likely to develop breast cancer, but less likely to die of it. One possible reason is that African American women tend to have more aggressive tumors, although why this is the case is not known. Women of other ethnic backgrounds — Asian, Hispanic, and Native American — have a lower risk of developing and dying from breast cancer than white women and African American women.
In 2010, there are more than 2.5 million breast cancer survivors in the U.S.
A woman’s risk of breast cancer approximately doubles if she has a first-degree relative (mother, sister, daughter) who has been diagnosed with breast cancer. About 20-30% of women diagnosed with breast cancer have a family history of breast cancer.
About 5-10% of breast cancers can be linked to gene mutations (abnormal changes) inherited from one’s mother or father. Mutations of the BRCA1 and BRCA2 genes are the most common. Women with these mutations have up to an 80% risk of developing breast cancer during their lifetime, and they are more likely to be diagnosed at a younger age (before menopause). An increased ovarian cancer risk is also associated with these genetic mutations. In men, about 1 in 10 breast cancers are believed to be due to BRCA2 mutations and even fewer cases to BRCA1 mutations.
About 70-80% of breast cancers occur in women who have no family history of breast cancer. These occur due to genetic abnormalities that happen as a result of the aging process and life in general, rather than inherited mutations.
The most significant risk factors for breast cancer are gender (being a woman) and age (growing older).
About 1 in 8 women in the United States (between 12 and 13%) will develop invasive breast cancer over the course of her lifetime.
In 2010, an estimated 207,090 new cases of invasive breast cancer are expected to be diagnosed in women in the U.S., along with 54,010 new cases of non-invasive (in situ) breast cancer.
About 1,970 new cases of invasive breast cancer will be diagnosed in men in 2010. Less than 1% of all new breast cancer cases occur in men.
From 1999 to 2006, breast cancer incidence rates in the U.S. decreased by about 2% per year. One theory is that this decrease was partially due to the reduced use of hormone replacement therapy (HRT) by women after the results of a large study called the Women’s Health Initiative were published in 2002. These results suggested a connection between HRT and increased breast cancer risk.
About 39,840 women in the U.S. are expected to die in 2010 from breast cancer, though death rates have been decreasing since 1991. These decreases are thought to be the result of treatment advances, earlier detection through screening, and increased awareness.
For women in the U.S., breast cancer death rates are higher than those for any other cancer, besides lung cancer.
Besides skin cancer, breast cancer is the most commonly diagnosed cancer among U.S. women. More than 1 in 4 cancers in women (about 28%) are breast cancer.
Compared to African American women, white women are slightly more likely to develop breast cancer, but less likely to die of it. One possible reason is that African American women tend to have more aggressive tumors, although why this is the case is not known. Women of other ethnic backgrounds — Asian, Hispanic, and Native American — have a lower risk of developing and dying from breast cancer than white women and African American women.
In 2010, there are more than 2.5 million breast cancer survivors in the U.S.
A woman’s risk of breast cancer approximately doubles if she has a first-degree relative (mother, sister, daughter) who has been diagnosed with breast cancer. About 20-30% of women diagnosed with breast cancer have a family history of breast cancer.
About 5-10% of breast cancers can be linked to gene mutations (abnormal changes) inherited from one’s mother or father. Mutations of the BRCA1 and BRCA2 genes are the most common. Women with these mutations have up to an 80% risk of developing breast cancer during their lifetime, and they are more likely to be diagnosed at a younger age (before menopause). An increased ovarian cancer risk is also associated with these genetic mutations. In men, about 1 in 10 breast cancers are believed to be due to BRCA2 mutations and even fewer cases to BRCA1 mutations.
About 70-80% of breast cancers occur in women who have no family history of breast cancer. These occur due to genetic abnormalities that happen as a result of the aging process and life in general, rather than inherited mutations.
The most significant risk factors for breast cancer are gender (being a woman) and age (growing older).
Friday, October 29, 2010
A bump in the road........
I saw Dr. Gawley yesterday for a mini~preop appointment. He said I've really done well, I've healed up very nicely, and that from yesterday until 11/22 when my surgery is scheduled, "we" would just be "tweaking" things a bit. I said that sounded good :)
Well, let me tell ya........that tweaking ended up being 75cc's more of saline in each side. I managed to be at work for about an hour before I had to leave because I was in the worst I have been in since the mastectomy. I broke down in tears just trying to sit back in bed...feeling like everything had ripped apart. And about an hour after that, due to a combination of things, I literally passed out. Randy found me slumped over in the bathroom! Probably the worst day I have had thru all of this. I didn't go into work today, either. Still very tight, like a vise totally wrapped around me. This post may even have to be typed in stages...not really able to be in one position for very long!
But, on the upside.......
Regarding the next surgery: The incision will only be about three inches long under each expander. Brenna will be ordering several sizes of implants. While I am under anesthesia in surgery, Dr. Gawley will take the expanders out of course, then put one set of implants in. I will then be propped up, he will look at how they look...and then he will either be happy, go smaller, or go bigger....depending on what he thinks. So, I guess I'll be surprised when I come out of anesthesia to see the NEW me :) I'll just be happy to get these blasted expanders OUT!
Well, can't stand to sit any longer.....will post more when I know more!
Love and Hugs to ALL!
Suzanne
Well, let me tell ya........that tweaking ended up being 75cc's more of saline in each side. I managed to be at work for about an hour before I had to leave because I was in the worst I have been in since the mastectomy. I broke down in tears just trying to sit back in bed...feeling like everything had ripped apart. And about an hour after that, due to a combination of things, I literally passed out. Randy found me slumped over in the bathroom! Probably the worst day I have had thru all of this. I didn't go into work today, either. Still very tight, like a vise totally wrapped around me. This post may even have to be typed in stages...not really able to be in one position for very long!
But, on the upside.......
Regarding the next surgery: The incision will only be about three inches long under each expander. Brenna will be ordering several sizes of implants. While I am under anesthesia in surgery, Dr. Gawley will take the expanders out of course, then put one set of implants in. I will then be propped up, he will look at how they look...and then he will either be happy, go smaller, or go bigger....depending on what he thinks. So, I guess I'll be surprised when I come out of anesthesia to see the NEW me :) I'll just be happy to get these blasted expanders OUT!
Well, can't stand to sit any longer.....will post more when I know more!
Love and Hugs to ALL!
Suzanne
Wednesday, October 13, 2010
Just a quick update.......
I saw Brenna at Dr. Gawley's office again yesterday for a little more saline added to the expanders. I know I'm getting close to the max, because I was VERY uncomfortable by yesterday afternoon...and was VERY uncomfortable until I finally took a pain pill (one of Randy's)around 8 PM. Finally got some relief. Now it's almost 6 AM, and I'm starting to tighten up again.....oh well :)
I have two more appointments...one with Dr. Gawley for a brief followup on 10/28, and then a pre-op appointment with Brenna two weeks after that. My surgery is set for November 22nd, to get the expanders out and the real fake ones in :) YAY!!!
I will definitely be Thankful this Thanksgiving :)
Hugs to All!
Suzanne
I have two more appointments...one with Dr. Gawley for a brief followup on 10/28, and then a pre-op appointment with Brenna two weeks after that. My surgery is set for November 22nd, to get the expanders out and the real fake ones in :) YAY!!!
I will definitely be Thankful this Thanksgiving :)
Hugs to All!
Suzanne
Saturday, October 2, 2010
October is.........
Breast Cancer Awareness Month. I'm sure everyone knows this by now, because there are advertisements on TV and definitely in magazines! I know that their goal, in part, is to raise money for research. Which is wonderful, if you have the funds to donate. But in these difficult financial times, that may not be feasible for most.
What I would like to let everyone know is that a lot of radiology clinics offer special discounts for mammograms in the month of October. We had a rep from one of the radiology clinics stop by the office the other day. He wanted to let us know that for the month of October, the charge of a mammogram is $65.00.
I cannot stress enough that EARLY DETECTION is the key! It will save your life. It can also mean the difference between just taking a pill once a day for five years vs taking a pill once a day for five years plus chemo and possibly RT, and possibly other drugs as well.
So, think about it.......and then go get your mammogram (if you haven't already).
What I would like to let everyone know is that a lot of radiology clinics offer special discounts for mammograms in the month of October. We had a rep from one of the radiology clinics stop by the office the other day. He wanted to let us know that for the month of October, the charge of a mammogram is $65.00.
I cannot stress enough that EARLY DETECTION is the key! It will save your life. It can also mean the difference between just taking a pill once a day for five years vs taking a pill once a day for five years plus chemo and possibly RT, and possibly other drugs as well.
So, think about it.......and then go get your mammogram (if you haven't already).
Friday, September 24, 2010
Enjoy your life................
That's what the Nurse Practioner (NP) told me to do. I started to say back to her "With the time I have left?" I'm not really sure, even two days later, how I am supposed to feel about that statement. All and all....most of what she told me was on the upside. She downgraded my tumor to a Stage 1...NOT a Stage 1B...and if you look it up, there really isn't a "1B"! And the recurrence rate is now at 11% rather than the 15% I was initially told. And the Her2NEU assay test came back negative. IF it was positive, I would also have to be on another drug, HERCEPTIN. After my initial biopsy, I was told the Her2NEU was positive. But the NP said that test is not reliable (then why do it ?) and that either the FISH test needs to be done (Which I was told it was going to be and then come to find out it was never ordered) or it can be determined by the OncotypeDX (which WAS done!).
The thing to learn from the above paragraph: The pieces of the puzzle won't be an exact fit, until ALL the pieces are tested and fine tuned :) Even though I was scared about learning the results of the OncoTypeDX results (it's what actually determines chemo vs no chemo), it evidently tells the oncologist a lot more than that....which is why I'm at 11% instead of the 15%. I also find that, for me, going to the oncology office is rather intimidating. I think that's because even though I'm at 11%, there is still a possibility of the cancer recurring. It's a reminder that I'm NOT immortal (go figure) and that maybe I'm not going to live to be 90 or more (like my parents). Right now...I'm taking things day by day.
So, along with all that wonderful chit chat with the NP ...... I had blood work... again...that I didn't know that they would do. I ended up feeling like a pin cushion between the lab work and then the IV infusion that I will now get every six months. It's called ZOMETA. At least it doesn't burn...just feels a little cold at first, and it just takes 30 minutes. That's the upside :) As I am learning... EVERYTHING HAS SIDE EFFECTS!!!!!!! and ZOMETA is no different :(
MY SYMPTOMS: (not necessarily what everyone else could have)...........
I was fine until 10:00 PM... THEN, severe indigestion, stomach upset, nausea..and some very uncomfortable pains radiating from my spine all the way around... like I had turned into an accordian. That went on for a few hours...I just kept drinking water trying to dilute the ZOMETA :) Then yesterday, the fatigue set it. I assumed at first it was because I was up the night before....but I ended up going to bed at SEVEN O'CLOCK PM!!!!! I would have slept thru the night, too......except.....for the NEXT side effect......MAJOR MUSCLE CRAMP in my calf around 9:30 PM. THAT shot me out of bed....except then I couldn't stand :) And of course, I woke Randy up! But he always knows what to do! First a bit of light massage to the calf down to my toes. Then a HEATING PAD! ahhhhh! Fell back to sleep until 4:30 AM! I feel better this morning :)
I guess the one thing to learn from this paragraph: DRINK LOTS OF WATER! If I had not fallen asleep, I would have been more hydrated, and then I might not have had the muscle cramp. But, it's hard to keep drinking water when you fall asleep :)
Live and learn!
Love and Hugs to all.....
The thing to learn from the above paragraph: The pieces of the puzzle won't be an exact fit, until ALL the pieces are tested and fine tuned :) Even though I was scared about learning the results of the OncoTypeDX results (it's what actually determines chemo vs no chemo), it evidently tells the oncologist a lot more than that....which is why I'm at 11% instead of the 15%. I also find that, for me, going to the oncology office is rather intimidating. I think that's because even though I'm at 11%, there is still a possibility of the cancer recurring. It's a reminder that I'm NOT immortal (go figure) and that maybe I'm not going to live to be 90 or more (like my parents). Right now...I'm taking things day by day.
So, along with all that wonderful chit chat with the NP ...... I had blood work... again...that I didn't know that they would do. I ended up feeling like a pin cushion between the lab work and then the IV infusion that I will now get every six months. It's called ZOMETA. At least it doesn't burn...just feels a little cold at first, and it just takes 30 minutes. That's the upside :) As I am learning... EVERYTHING HAS SIDE EFFECTS!!!!!!! and ZOMETA is no different :(
MY SYMPTOMS: (not necessarily what everyone else could have)...........
I was fine until 10:00 PM... THEN, severe indigestion, stomach upset, nausea..and some very uncomfortable pains radiating from my spine all the way around... like I had turned into an accordian. That went on for a few hours...I just kept drinking water trying to dilute the ZOMETA :) Then yesterday, the fatigue set it. I assumed at first it was because I was up the night before....but I ended up going to bed at SEVEN O'CLOCK PM!!!!! I would have slept thru the night, too......except.....for the NEXT side effect......MAJOR MUSCLE CRAMP in my calf around 9:30 PM. THAT shot me out of bed....except then I couldn't stand :) And of course, I woke Randy up! But he always knows what to do! First a bit of light massage to the calf down to my toes. Then a HEATING PAD! ahhhhh! Fell back to sleep until 4:30 AM! I feel better this morning :)
I guess the one thing to learn from this paragraph: DRINK LOTS OF WATER! If I had not fallen asleep, I would have been more hydrated, and then I might not have had the muscle cramp. But, it's hard to keep drinking water when you fall asleep :)
Live and learn!
Love and Hugs to all.....
Saturday, September 18, 2010
A busy week is behind me....whew!
It's difficult to adjust to a schedule full of medical appointments, when one is used to being healthy and just going to a doctor "as needed". Breast cancer turns your life upside down....without any apologies!
The nuclear bone scan went better than expected. I was expecting a cold hard table to lay on...but it was actually padded, with little arm rests! And for once being short was a good thing. All the scans could be done in 1/2 hour rather than the typical hour, due to my size! YAY for that!!!!! It's just a long day, because the IV is given, then you leave for three hours, then go back for the actual scan.
I see the oncologist on 9/22, and will find out the results then. I was told by the tech that I should not worry about the test, that it is a routine order after a diagnosis of breast cancer.
Tamoxifen decreases bone mass. So, when I go see the oncologist, I am also scheduled to get an IV infusion of Reclast. They give it to patients with bone cancer (YIKES)....but it will build up my bones they say. Someone has determined that it also helps to stop the breast cancer from coming back..... there can be some side effects..most are short term...such as fever, flu like symptoms, bone pain....
but I guess the benefits outweigh the effects. And as I am learning...EVERYTHING has side effects! And honestly, I am getting tired of hearing about them.
On a very UP side......I am on target to have the implants installed sometime after November 8th. I can't do it before then, due to things going on at the office. But a week isn't going to make a whole lot of difference.
Recovery time is much shorter after this next surgery....probably off work no more than a week....since I work in an office setting. Probably if you did manual labor, that would be a different story.
This whole medical drama has not been a piece of cake, by any means....but it could have been so much more involved than it has been. I have been very blessed, fortunate, lucky...all of the above? The most important thing to take from my experience......
EARLY DETECTION! Hopefully, it's caught BEFORE it becomes invasive.
Be vigilant about your mammograms. If there is a strong history of breast cancer in your family...opt for also getting a MRI of your breasts. Some women also have a mammogram every 6 months rather than yearly. Most insurance plans won't pay for it, but it would be worth the expense for breast cancer to be caught 6 months earlier...
As I know I've said before....there are so many different scenarios to breast cancer, more than I ever realized. It's a slow, worrysome process for a patient, while the "team" of doctors comes up with the best game plan. Ultimately, until the oncologist has been seen, and the results of further tests are back...everything is subject to change. The waiting is extremely difficult...
The nuclear bone scan went better than expected. I was expecting a cold hard table to lay on...but it was actually padded, with little arm rests! And for once being short was a good thing. All the scans could be done in 1/2 hour rather than the typical hour, due to my size! YAY for that!!!!! It's just a long day, because the IV is given, then you leave for three hours, then go back for the actual scan.
I see the oncologist on 9/22, and will find out the results then. I was told by the tech that I should not worry about the test, that it is a routine order after a diagnosis of breast cancer.
Tamoxifen decreases bone mass. So, when I go see the oncologist, I am also scheduled to get an IV infusion of Reclast. They give it to patients with bone cancer (YIKES)....but it will build up my bones they say. Someone has determined that it also helps to stop the breast cancer from coming back..... there can be some side effects..most are short term...such as fever, flu like symptoms, bone pain....
but I guess the benefits outweigh the effects. And as I am learning...EVERYTHING has side effects! And honestly, I am getting tired of hearing about them.
On a very UP side......I am on target to have the implants installed sometime after November 8th. I can't do it before then, due to things going on at the office. But a week isn't going to make a whole lot of difference.
Recovery time is much shorter after this next surgery....probably off work no more than a week....since I work in an office setting. Probably if you did manual labor, that would be a different story.
This whole medical drama has not been a piece of cake, by any means....but it could have been so much more involved than it has been. I have been very blessed, fortunate, lucky...all of the above? The most important thing to take from my experience......
EARLY DETECTION! Hopefully, it's caught BEFORE it becomes invasive.
Be vigilant about your mammograms. If there is a strong history of breast cancer in your family...opt for also getting a MRI of your breasts. Some women also have a mammogram every 6 months rather than yearly. Most insurance plans won't pay for it, but it would be worth the expense for breast cancer to be caught 6 months earlier...
As I know I've said before....there are so many different scenarios to breast cancer, more than I ever realized. It's a slow, worrysome process for a patient, while the "team" of doctors comes up with the best game plan. Ultimately, until the oncologist has been seen, and the results of further tests are back...everything is subject to change. The waiting is extremely difficult...
Thursday, September 9, 2010
LYMPHEDEMA
Lymphedema is swelling underneath the skin. This can happen for a lot of different reasons, but it can definitely happen after lymph nodes are removed. And lymph nodes are always removed when there is a diagnosis of breast cancer. It can start at anytime. One way to treat it is with a compression sleeve. And it's best to be fitted for a compression sleeve before too much swelling starts.
Last week I noticed a problem with my right arm. The back of my arm, from the elbow up the back of my arm started to hurt, and then I noticed an indentation in the skin. And I could feel a vein really enlarged running right next to that indentation. I made an appointment with the Rehab department at Paradise Valley hospital yesterday. I met with Kathy, who is orginally from Lexington, KY! small world :) So, she took lots of measurements, and went over the signs and symptoms of lymphedema, and how to treat it. She said she was glad I was being so proactive. A lot of people aren't, and they wait longer than they should to treat the problem.
I have been fitted for a compression sleeve. I'll go back in two weeks to pick it up and for Kathy to see how I am doing at that time. Kathy said since I am taking care of this now, I should only need to wear the sleeve when needed. Not all the time, as some people have to do. But, I may have to do that in the future.....
This is just another bump in the road you need to be aware of, if you are ever diagnosed with breast cancer. It's best to treat this early....if not, it can develop into an infection....very painful and harder to get the swelling to improve.
Well, that's what I learned yesterday. More appointments next week......
I'll keep you posted :)
Love to All!
Last week I noticed a problem with my right arm. The back of my arm, from the elbow up the back of my arm started to hurt, and then I noticed an indentation in the skin. And I could feel a vein really enlarged running right next to that indentation. I made an appointment with the Rehab department at Paradise Valley hospital yesterday. I met with Kathy, who is orginally from Lexington, KY! small world :) So, she took lots of measurements, and went over the signs and symptoms of lymphedema, and how to treat it. She said she was glad I was being so proactive. A lot of people aren't, and they wait longer than they should to treat the problem.
I have been fitted for a compression sleeve. I'll go back in two weeks to pick it up and for Kathy to see how I am doing at that time. Kathy said since I am taking care of this now, I should only need to wear the sleeve when needed. Not all the time, as some people have to do. But, I may have to do that in the future.....
This is just another bump in the road you need to be aware of, if you are ever diagnosed with breast cancer. It's best to treat this early....if not, it can develop into an infection....very painful and harder to get the swelling to improve.
Well, that's what I learned yesterday. More appointments next week......
I'll keep you posted :)
Love to All!
Friday, September 3, 2010
Oncotype DX results
What a way to start off the day! Dr. Isaacs's nurse called me first thing this morning about an issue with a Vitamin D prescription...and then she said, Dr. Isaacs wanted to talk to me about my Oncotype DX results. He asks how I'm doing.....I said, well, now I was really nervous (since I was getting results!) But he said nothing to worry about. The test result came back at 18. As long as it's under 20...chemo is not advised. So, I may have gotten in right under the wire....but that's OK! NO CHEMO IS NOOOOOOO CHEMO!!!!!!
Next phase...........now I will be given Tamoxifen for five years. There are side effects....oh joy.....so we'll see. I think he wants me to start on it fairly soon, because he said any side effects can be discussed at my next appointment on 9/22.
I'm figuering out that this will never be over. My life will now be a new kind of life........never back to the one I had. Yes, I know...I'm still living. But this is going to be an adjustment, and not something I can adjust to overnight.
What I am learning, and need to pass on to anyone reading this is:
There are so many variables to breast cancer, it is staggering. The size and location of the tumor, or if there are multiple tumors, the type of tumor, if the tumor is hormone receptor positive or negative, if the tumor is Her2Neu positive (which mine was, and means the cancer is more aggressive), where the results fall in the Oncotype DX assay....All of this, and more.....plays a part in the treatment. So, if one physician tells you early on that things are one way or another...take it with a grain of salt. You have a TEAM of doctors ....they will all have something to say about your diagnosis....but the physician that makes the final plan is the oncologist....and your input, too, of course.
I still have more tests to take in September. More pieces to add to that puzzle :)
Next phase...........now I will be given Tamoxifen for five years. There are side effects....oh joy.....so we'll see. I think he wants me to start on it fairly soon, because he said any side effects can be discussed at my next appointment on 9/22.
I'm figuering out that this will never be over. My life will now be a new kind of life........never back to the one I had. Yes, I know...I'm still living. But this is going to be an adjustment, and not something I can adjust to overnight.
What I am learning, and need to pass on to anyone reading this is:
There are so many variables to breast cancer, it is staggering. The size and location of the tumor, or if there are multiple tumors, the type of tumor, if the tumor is hormone receptor positive or negative, if the tumor is Her2Neu positive (which mine was, and means the cancer is more aggressive), where the results fall in the Oncotype DX assay....All of this, and more.....plays a part in the treatment. So, if one physician tells you early on that things are one way or another...take it with a grain of salt. You have a TEAM of doctors ....they will all have something to say about your diagnosis....but the physician that makes the final plan is the oncologist....and your input, too, of course.
I still have more tests to take in September. More pieces to add to that puzzle :)
Tuesday, August 31, 2010
Expanding the expanders
Just a quick note...because there really isn't a lot to say about this part of the process. Which is a good thing! It sounds scarier than it is. Brenna uses this little instrument (she said Dr. Gawley calls it a stud finder) ha ha ha.... to find the port in the expander. She marked the spot. Then there is a tiny stick into that port...I did not even feel it on the right...and just a tad on the left. So, NOT BAD AT ALL!!!! Brenna added 50 cc's to each side. I did find out today that while I was in surgery, 200 cc's were added initially. So, that's why I did have "bumps" when I came out of anesthesia :) This process will happen around every two weeks or so. The final size will partly be determined by how much my skin will stretch, and I guess I'll say what I want and Dr. Gawley will say what HE wants :) I did tell Brenna that I did NOT want to be as big as I was....which was a D CUP. Way too much for my height of 5'1". She said that wouldn't be a problem. Time will tell what I end up with :)
How many pieces are in this puzzle box?
I never liked puzzles. And if I did get one, I always looked to see how many pieces were in the box. I didn't want to do one that was going to take forever to finish, or if the pieces looked too small, or they all looked alike....no way!
But here I sit, trying to figure out the biggest puzzle I've ever been faced with... and I'm not enjoying it any more than I did the ones that I dumped out of the box. I was reading more about this OncoType DX study (www.genomichealth.com which is where my tumor was sent). Unfortunately, you have to read what other people have written about THEIR medical history to gleen any information about this assay test.
Test scores range from 0 to 100. ZERO being the BEST score...and obviously 100 being the worst. Well, I thought...OK...50/50 chance of maybe still being told I should have chemo. BUT....after reading the medical history of strangers, I finally figured out that my score has to be UNDER 19!!! After that number, the company starts tacking on statements like "moderate risk" or "greater risk" of having a recurrence in 5 to 10 years down the road. Wait, let me just get out my crystal ball. Who would ever design a test where the markers need to be that low? Why not just make it 0 to 50? Because if anyone hits the 100 mark....what do they say then?
As I was reading what seemed to be mini infomercials about the OncoType DX assay study...they all said, "It was just another piece of information to help me make an informed decision". What I wish is that this tidbit of info would have been shared with me, the patient, rather than being told "NO CHEMO"! Talk about a major roller coaster ride! And I've never liked roller coasters either!
Later this morning I go to the plastic surgeon's office for my first enhancement! I'm sure I'll have more to say...........later!
But here I sit, trying to figure out the biggest puzzle I've ever been faced with... and I'm not enjoying it any more than I did the ones that I dumped out of the box. I was reading more about this OncoType DX study (www.genomichealth.com which is where my tumor was sent). Unfortunately, you have to read what other people have written about THEIR medical history to gleen any information about this assay test.
Test scores range from 0 to 100. ZERO being the BEST score...and obviously 100 being the worst. Well, I thought...OK...50/50 chance of maybe still being told I should have chemo. BUT....after reading the medical history of strangers, I finally figured out that my score has to be UNDER 19!!! After that number, the company starts tacking on statements like "moderate risk" or "greater risk" of having a recurrence in 5 to 10 years down the road. Wait, let me just get out my crystal ball. Who would ever design a test where the markers need to be that low? Why not just make it 0 to 50? Because if anyone hits the 100 mark....what do they say then?
As I was reading what seemed to be mini infomercials about the OncoType DX assay study...they all said, "It was just another piece of information to help me make an informed decision". What I wish is that this tidbit of info would have been shared with me, the patient, rather than being told "NO CHEMO"! Talk about a major roller coaster ride! And I've never liked roller coasters either!
Later this morning I go to the plastic surgeon's office for my first enhancement! I'm sure I'll have more to say...........later!
Sunday, August 29, 2010
More tests????
I found out this week that my surgically removed tumor is being sent for further testing. The company is called genomic health, based in San Francisco. They specialize in a test called oncotypeDX...breast cancer assay test. This test is done on tumors that are early-stage breast cancer, hormone receptor positive, lymph node negative. Well, all that is me :|
It is done to help my doctor and myself make a MORE INFORMED TREATMENT DECISION. This test is intended to help determine whether or not I am likely to benefit from CHEMOTHERAPY...... IN ADDITION.......... to hormonal therapy.
Honestly, I thought we had already pretty much made that decision, and it did NOT include Radiation Therapy or CHEMO. I do have to have a total bone Nuclear study in September, and a chest x-ray....but I feel pretty confident that they will be OK. But THIS new study has me a little un~nerved, to say the least. I felt like out was out of the woods....now I feel like I'm back in the thick of it.
Thest test score is from 1-100. The lower the score the better. However, the brochure states that "It is important to understand that a lower Recurrence Score result does not mean that there is no chance that the breast cancer will return. Also, a higher score does not mean that the breast cancer will definitely return.
Say What? And so I'm supposed to have a lot of faith in this test?
I don't think so!
At least I'm not paying for it......the insurance covers it 100% whoo hooo...... :|
September is going to be a long month.......more hurry up and wait...... and I guess more patience on my part....which I never really had and am quickly running out of.
It is done to help my doctor and myself make a MORE INFORMED TREATMENT DECISION. This test is intended to help determine whether or not I am likely to benefit from CHEMOTHERAPY...... IN ADDITION.......... to hormonal therapy.
Honestly, I thought we had already pretty much made that decision, and it did NOT include Radiation Therapy or CHEMO. I do have to have a total bone Nuclear study in September, and a chest x-ray....but I feel pretty confident that they will be OK. But THIS new study has me a little un~nerved, to say the least. I felt like out was out of the woods....now I feel like I'm back in the thick of it.
Thest test score is from 1-100. The lower the score the better. However, the brochure states that "It is important to understand that a lower Recurrence Score result does not mean that there is no chance that the breast cancer will return. Also, a higher score does not mean that the breast cancer will definitely return.
Say What? And so I'm supposed to have a lot of faith in this test?
I don't think so!
At least I'm not paying for it......the insurance covers it 100% whoo hooo...... :|
September is going to be a long month.......more hurry up and wait...... and I guess more patience on my part....which I never really had and am quickly running out of.
Monday, August 23, 2010
Clothing
Just a quick tip...while I'm thinking about it.
Drain tubes....I know, they are out, and everyone, including me, is sick of hearing about them. BUT.....remember to buy button style shirts/tops in a size probably twice as large as you usually buy....before you have surgery! The drains are bulky, and they end up resting right at the hip area. And the camisole that holds them is long. I found a really nice Lee Riders button down shirt at Walmart, that worked like a charm! Also, Walmart had a really cute lounge set with elastic crop pants and a button down top... very comfy :) And of course, the prices were reasonable! The other thing I had, due to working in the medical field, are scrub tops in all sizes (always a weight battle)! Anyway, once I could move my arms just a bit up, I could put the scrub top over my head and just maneuver my arms in.....the two large ones that I have were long enough to cover the entire camisole. You need to have at least one top to wear out, because you will be going to doctor appointments, even if you don't go anywhere else.....
Well, that's my tip for the day :)
Love and hugs to all!
Suzanne
Drain tubes....I know, they are out, and everyone, including me, is sick of hearing about them. BUT.....remember to buy button style shirts/tops in a size probably twice as large as you usually buy....before you have surgery! The drains are bulky, and they end up resting right at the hip area. And the camisole that holds them is long. I found a really nice Lee Riders button down shirt at Walmart, that worked like a charm! Also, Walmart had a really cute lounge set with elastic crop pants and a button down top... very comfy :) And of course, the prices were reasonable! The other thing I had, due to working in the medical field, are scrub tops in all sizes (always a weight battle)! Anyway, once I could move my arms just a bit up, I could put the scrub top over my head and just maneuver my arms in.....the two large ones that I have were long enough to cover the entire camisole. You need to have at least one top to wear out, because you will be going to doctor appointments, even if you don't go anywhere else.....
Well, that's my tip for the day :)
Love and hugs to all!
Suzanne
Things are gettin' better!
I didn't think it would happen....but the drain tubes are FINALLY OUT! Now, just to warn you in case you go thru this, the second two are not as pain free as the first two. However, what Brenna had me do was take a deep breath in, and then slowly let it out as she pulled the tube out. Well, on the first one, I took the deep breath in and then just held it. On the second drain I remembered to blow out...and it was a lot less paingful :) So, remember....deep breath in....and LET IT OUT SLOWLY :)
Even better news.....the tissue expanders will get more saline next week.
The BEST NEWS.....when I do have the next surgery to take the expanders out and put the implants in....NO DRAIN TUBES!!!!! I was so happy to hear that! The longer the drain tubes are in, the more uncomfortable they become :( But, it's just one of those things that you have to get through.
Even better news.....the tissue expanders will get more saline next week.
The BEST NEWS.....when I do have the next surgery to take the expanders out and put the implants in....NO DRAIN TUBES!!!!! I was so happy to hear that! The longer the drain tubes are in, the more uncomfortable they become :( But, it's just one of those things that you have to get through.
Wednesday, August 18, 2010
85% cure rate
Guess that's better than I thought, actually. There is a 15% chance of the cancer coming back. I saw the Oncologist today. His name is Dr. Jeffrey Isaacs, and he is wonderful :) Awesome personality, older, cautious, took his time talking to me and hubby, has ordered a Chest X ray and a Nuclear Total Body Bone Scan...but no PET SCAN, he said it was too expensive and wouldn't tell him what he wanted to know anyway:) He's from South Africa and has a lovely accent. I liked the way he talked :)
So, the rest of what he had to say is that he doesn't think I will need chemo. Only the hormone pill. But, because I already have osteopenia, (a precursor to osteoporosis) he wants to get the other results in before he decides what pill I should be on. Some of the pills cause more bone loss than others. And since he feels my prognosis is good, he doesn't want to give me a pill that will cause more harm than good. So, I go back to his office in a month....and we will go from there.
Maybe by then these blasted drains will be out!
Hugs to all :)
Suzanne
So, the rest of what he had to say is that he doesn't think I will need chemo. Only the hormone pill. But, because I already have osteopenia, (a precursor to osteoporosis) he wants to get the other results in before he decides what pill I should be on. Some of the pills cause more bone loss than others. And since he feels my prognosis is good, he doesn't want to give me a pill that will cause more harm than good. So, I go back to his office in a month....and we will go from there.
Maybe by then these blasted drains will be out!
Hugs to all :)
Suzanne
Sunday, August 15, 2010
5 1/2 weeks?
There is a really good website to use for reference. It's www.breastcancer.org.
Now granted, this website scared the heck out of me over the sentinel node biopsy... but it also made me question what was going to happen, if numbing was going to be used, etc...
This post is called 5/12 weeks because I finally found an answer to my question: HOW LONG WILL THESE LAST TWO DRAIN TUBES BE IN????? Answer: Possibly 5 1/2 weeks. So now that I know that is a possibilty, I can move onto other things and not be too terribly concerned. Granted, they are not fun, and there is a lot of pinching, pulling, and/or pain associated with them. But it beats the alternative, which is a seroma (a collection of fluid under the skin) that would either have to be extracted with a needle, or worse yet, the drain tube put back in! So, time to put on the big girl panties and just be patient. So, my appointment tomorrow with Dr. Gawley will be cancelled....and I don't think I'll reschedule until I know I'm under 30 cc's!
Another good website, just to purchase things associated with breast cancer:
www.pinkribbonshop.com
I got a really cool hat, pink ribbon bumper sticker, and pink ribbon stickers to put on cards.
Just in case you ever need to go on~line shopping.....
Speaking of shopping:
Some items you will need if you or someone close to you is diagnosed with breast cancer.
DollarTree or probably any Dollar Store will carry packages of these little round cosmetic pads. Usually they are used to apply makeup. However, what hubby creatively uses these for ...... he cuts a slit halfway into the round, then cuts out a little piece in the center. Then Vaseline is applied to the one side. This is then fitted around the drain tube, Vaseline side towards the skin, of course. They definitely help with some of the discomfort. The tight mastectomy bra then goes on, which holds the pads in place :)
Sleeping: Unless you usually sit up when you sleep at night........the best thing I found was one of those pillows with arms that are for reading in bed. At least I do sleep for a few hours! If you try to prop up with just pillows, at least in my case, I will keep slipping lower and lower until I'm down to just one pillow! Can't do that as easily with a reading pillow :)
For the caregiver: Whomever is going to help you with those drain tubes.... you will need surgical gloves in their size and alcohol prep pads (to wipe off the drain collection bulbs)...both of these should be purchased in advance, and make sure to buy a LOT! To minimize the risk of infection, the person will need to glove up before working with the drains, and at first, hubby was going thru EIGHT gloves a day. We are now at four, of course...and we are working on our third box of gloves!
Once again, thank you for reading my Blog...and for all the love and support that is still being sent my way :)
I'll post again soon.....my first appointment with the Oncologist is August 18th.
Now granted, this website scared the heck out of me over the sentinel node biopsy... but it also made me question what was going to happen, if numbing was going to be used, etc...
This post is called 5/12 weeks because I finally found an answer to my question: HOW LONG WILL THESE LAST TWO DRAIN TUBES BE IN????? Answer: Possibly 5 1/2 weeks. So now that I know that is a possibilty, I can move onto other things and not be too terribly concerned. Granted, they are not fun, and there is a lot of pinching, pulling, and/or pain associated with them. But it beats the alternative, which is a seroma (a collection of fluid under the skin) that would either have to be extracted with a needle, or worse yet, the drain tube put back in! So, time to put on the big girl panties and just be patient. So, my appointment tomorrow with Dr. Gawley will be cancelled....and I don't think I'll reschedule until I know I'm under 30 cc's!
Another good website, just to purchase things associated with breast cancer:
www.pinkribbonshop.com
I got a really cool hat, pink ribbon bumper sticker, and pink ribbon stickers to put on cards.
Just in case you ever need to go on~line shopping.....
Speaking of shopping:
Some items you will need if you or someone close to you is diagnosed with breast cancer.
DollarTree or probably any Dollar Store will carry packages of these little round cosmetic pads. Usually they are used to apply makeup. However, what hubby creatively uses these for ...... he cuts a slit halfway into the round, then cuts out a little piece in the center. Then Vaseline is applied to the one side. This is then fitted around the drain tube, Vaseline side towards the skin, of course. They definitely help with some of the discomfort. The tight mastectomy bra then goes on, which holds the pads in place :)
Sleeping: Unless you usually sit up when you sleep at night........the best thing I found was one of those pillows with arms that are for reading in bed. At least I do sleep for a few hours! If you try to prop up with just pillows, at least in my case, I will keep slipping lower and lower until I'm down to just one pillow! Can't do that as easily with a reading pillow :)
For the caregiver: Whomever is going to help you with those drain tubes.... you will need surgical gloves in their size and alcohol prep pads (to wipe off the drain collection bulbs)...both of these should be purchased in advance, and make sure to buy a LOT! To minimize the risk of infection, the person will need to glove up before working with the drains, and at first, hubby was going thru EIGHT gloves a day. We are now at four, of course...and we are working on our third box of gloves!
Once again, thank you for reading my Blog...and for all the love and support that is still being sent my way :)
I'll post again soon.....my first appointment with the Oncologist is August 18th.
Tuesday, August 10, 2010
baby steps....
I think I'm beginning to figure out that being diagnosed with breast cancer will be a never ending process. Silly me, I thought once I had the mastectomy, maybe I wouldn't have to worry about doing much else. WRONG!
On the positive side, I don't have to see my breast surgeon for six months. But, I will be seeing her every six months, probably from now on...since now I won't be having future mammograms :) The final path report puts me at Stage 2. Which is pretty much middle of the road.
Somewhat on the negative side.....I had to make an appointment with an Oncologist. Now hopefully, this will just be to get me started on one of the "anti-hormone" pills. There are a few different ones on the market. But....when I made the appointment, the receptionist wanted to know if I had an MRI, CT, or PET scan. Of course, I haven't. Which now makes me wonder if I'm going to have to have one or more of those tests done???? Ergo.......baby steps! I guess no one wants to give a full lay out of what all is in store for a person once they are diagnosed with breast cancer. It would be a lot to process for one thing, and for the other, just running away to a deserted island sounds pretty good at times :)
I'm still dealing with these blasted drain tubes. By the looks of things, not sure they are going to come out Thursday........more baby steps!
On the positive side, I don't have to see my breast surgeon for six months. But, I will be seeing her every six months, probably from now on...since now I won't be having future mammograms :) The final path report puts me at Stage 2. Which is pretty much middle of the road.
Somewhat on the negative side.....I had to make an appointment with an Oncologist. Now hopefully, this will just be to get me started on one of the "anti-hormone" pills. There are a few different ones on the market. But....when I made the appointment, the receptionist wanted to know if I had an MRI, CT, or PET scan. Of course, I haven't. Which now makes me wonder if I'm going to have to have one or more of those tests done???? Ergo.......baby steps! I guess no one wants to give a full lay out of what all is in store for a person once they are diagnosed with breast cancer. It would be a lot to process for one thing, and for the other, just running away to a deserted island sounds pretty good at times :)
I'm still dealing with these blasted drain tubes. By the looks of things, not sure they are going to come out Thursday........more baby steps!
Monday, August 9, 2010
A tiny setback :(
Unfortunately, my body is now calling the shots. I cannot have my last two drains removed until I am under 30 cc's in a 24 hour period. Currently I am at FIFTY! So, my appointment for having these drains removed has been pushed back to Thursday afternoon :(
Needless to say, I'm not thrilled about it. But, it's just the way things are. Tomorrow I will see Dr. Walker.....I'll have more to post after that visit.
Needless to say, I'm not thrilled about it. But, it's just the way things are. Tomorrow I will see Dr. Walker.....I'll have more to post after that visit.
Tuesday, August 3, 2010
Two down, two to go :)
Saw Dr. Gawley yesterday, and two of my drains were removed. I thought it would be uncomfortable, but it just felt like a little squiggle as the one was removed. Didn't feel anything on the right side. Hopefully the other two will be removed on August 9th. These last two are in deeper, so still thinking it might be a bit uncomfortable to get out....I'll let you know :)
I was told everything is healing well, and I'm right on track.....YAY!
I was told everything is healing well, and I'm right on track.....YAY!
Saturday, July 31, 2010
Much a do about nothing?
It's now Saturday, and I've been home for five days. This is the first day I've actually felt like sitting at the computer for more than two minutes at a time. So, to start where I left off.......
The sentinel node biopsy was kind of a "That's IT?" kind of moment! Quite unbelieveable after all the worrying I did. But it was literally just a little stick for the numbing med (and yes, they did numb the area) and then the injection of the nuclear isotope. Took like three minutes! But what I would suggest is that anyone going thru this, stick to your guns, ask questions...as many and as often as you need to....demand local numbing, and you will be fine. The procedure was done in the breast center, and I think that made a difference too. Nuclear med is so cold and sterile and that department will scan every part of the body. The Breast Center does only....BREASTS :)
When the anesthesiologist came in to see me, I was never so happy in my life! FINALLY the surgery was going to happen...oh, and my EKG was misread...no problems, Echo was fine, repeat EKG was FINE! ohhhh well.....at least I had the OK from the cardiologist that I could have surgery :)
Surgery went fine, I am told. I was given Dilaudid to manage the pain for the first twelve hours or so. I was discharged on Tuesday around 10 AM :) I slept much better in my own bed, rather than with the monitors beeping and whirrrrring all night!
I saw Dr. Gawley for my first post-op appointment on Thursday. He said everything looked good, minimal bruising...it was a rough appointment for me, first day back out of the house and sitting up for a lot longer than I had been the last few days.
Dr. Walker phoned yesterday. My pathology report came back unbelieveably good! NO cancer in the lymph nodes (they removed three)and no cancer in any of the breast tissue...not even around the tumor! Not sure how it can be called invasive when the cancer didn't "invade". That will be my question to Dr. Walker when I see her the week of August 9th.
So, I will still be learning about what additional treatment....maybe the "anti~hormone" pill, since my cancer is hormone receptor positive. I still have questions for my doctors :)
And then there is still the process of filling up the extenders, and getting some curves back :)
Oh, and one more thing! Hubby is always thinkin' :) I have four drain tubes in. After I saw Dr. Gawley he said I could then shower...but don't get the drains soaked! The solution: BUNGEE CORD! The bungee cord is draped around my neck, the drain tubes already have a safety pin in a little plastic flap that is on part of the tube. The safety pins are hooked onto the curved ends of the bungee cord, two on each end of the cord, so that the tubes are then able to hang in front of me while I shower :) I think it's the most clever use of a bungee cord that I have ever heard of!
Hugs to All!
Suzanne
The sentinel node biopsy was kind of a "That's IT?" kind of moment! Quite unbelieveable after all the worrying I did. But it was literally just a little stick for the numbing med (and yes, they did numb the area) and then the injection of the nuclear isotope. Took like three minutes! But what I would suggest is that anyone going thru this, stick to your guns, ask questions...as many and as often as you need to....demand local numbing, and you will be fine. The procedure was done in the breast center, and I think that made a difference too. Nuclear med is so cold and sterile and that department will scan every part of the body. The Breast Center does only....BREASTS :)
When the anesthesiologist came in to see me, I was never so happy in my life! FINALLY the surgery was going to happen...oh, and my EKG was misread...no problems, Echo was fine, repeat EKG was FINE! ohhhh well.....at least I had the OK from the cardiologist that I could have surgery :)
Surgery went fine, I am told. I was given Dilaudid to manage the pain for the first twelve hours or so. I was discharged on Tuesday around 10 AM :) I slept much better in my own bed, rather than with the monitors beeping and whirrrrring all night!
I saw Dr. Gawley for my first post-op appointment on Thursday. He said everything looked good, minimal bruising...it was a rough appointment for me, first day back out of the house and sitting up for a lot longer than I had been the last few days.
Dr. Walker phoned yesterday. My pathology report came back unbelieveably good! NO cancer in the lymph nodes (they removed three)and no cancer in any of the breast tissue...not even around the tumor! Not sure how it can be called invasive when the cancer didn't "invade". That will be my question to Dr. Walker when I see her the week of August 9th.
So, I will still be learning about what additional treatment....maybe the "anti~hormone" pill, since my cancer is hormone receptor positive. I still have questions for my doctors :)
And then there is still the process of filling up the extenders, and getting some curves back :)
Oh, and one more thing! Hubby is always thinkin' :) I have four drain tubes in. After I saw Dr. Gawley he said I could then shower...but don't get the drains soaked! The solution: BUNGEE CORD! The bungee cord is draped around my neck, the drain tubes already have a safety pin in a little plastic flap that is on part of the tube. The safety pins are hooked onto the curved ends of the bungee cord, two on each end of the cord, so that the tubes are then able to hang in front of me while I shower :) I think it's the most clever use of a bungee cord that I have ever heard of!
Hugs to All!
Suzanne
Friday, July 23, 2010
and the saga continues.......
Evidently, the professionals at Scottsdale Hospital can't read an EKG! Because, after I saw the cardiologist today about my ECHO...which was normal, they re-did my EKG...and low and behold it must be a miracle because it was NORMAL TOO!!!!!!!
So, this week I spent my time scheduling my own STAT ECHO, asking the surgeon's office to send my EKG to Cardiovascular Consultants...which CVC never received, which is why they repeated the EKG....and now I will have a 20% copay for all of it, on top of the $50.00 total amount paid in copays.
So, when I got home from finding out my results, who should call but a very unfortunate nurse from Scottsdale Piper Center. Unfortunate, for her, because I chewed her out! And that is so TOTALLY not like me! But, she started off the conversation by wanting to know if we had time to discuss my upcoming procedure...so sure, I've got time. And "Did I know I was to be there at 8:30 AM?" And I told her that I was originally told 8:30, then I was told 8:00 AM..and I was planning on being there at 8:00....I was told "OH NO!!!! 8:30 is PLENTY of time :)"
Then, the unfortunate nurse said "So, I see you had your pre-op lab and EKG here, do you have any questions about that?" And I said.....Why YES! Could you tell me whom it might be that CAN'T READ AN EKG??????? And then I explained all of the above... when I got to the money part, she said she couldn't do anything about that! And I said I was fully aware of that.
I also told her I have been jumping thru 15 hoops just trying to get this surgery accomplished with the Scottsdale Campus....and that I had NO CONFIDENCE in them WHAT SO EVER!
Well, I think that may have upset her just a bit. She said the staff at the Piper Center would do their utmost to make sure "I was well taken care of".....which is what I'm kind of afraid of at this point! I told her what she could do for me was GET ME DISCHARGED ASAP ON TUESDAY!!!!!! Guess that comment didn't make her happy....
With that, she told me to "have a nice weekend" and hung up! Like a NICE weekend prior to losing my breasts is even possible???! These people are CLUELESS!!!!!
oh, so the surgery is on for Monday.....I have clearance from MY cardiologist :)
So, this week I spent my time scheduling my own STAT ECHO, asking the surgeon's office to send my EKG to Cardiovascular Consultants...which CVC never received, which is why they repeated the EKG....and now I will have a 20% copay for all of it, on top of the $50.00 total amount paid in copays.
So, when I got home from finding out my results, who should call but a very unfortunate nurse from Scottsdale Piper Center. Unfortunate, for her, because I chewed her out! And that is so TOTALLY not like me! But, she started off the conversation by wanting to know if we had time to discuss my upcoming procedure...so sure, I've got time. And "Did I know I was to be there at 8:30 AM?" And I told her that I was originally told 8:30, then I was told 8:00 AM..and I was planning on being there at 8:00....I was told "OH NO!!!! 8:30 is PLENTY of time :)"
Then, the unfortunate nurse said "So, I see you had your pre-op lab and EKG here, do you have any questions about that?" And I said.....Why YES! Could you tell me whom it might be that CAN'T READ AN EKG??????? And then I explained all of the above... when I got to the money part, she said she couldn't do anything about that! And I said I was fully aware of that.
I also told her I have been jumping thru 15 hoops just trying to get this surgery accomplished with the Scottsdale Campus....and that I had NO CONFIDENCE in them WHAT SO EVER!
Well, I think that may have upset her just a bit. She said the staff at the Piper Center would do their utmost to make sure "I was well taken care of".....which is what I'm kind of afraid of at this point! I told her what she could do for me was GET ME DISCHARGED ASAP ON TUESDAY!!!!!! Guess that comment didn't make her happy....
With that, she told me to "have a nice weekend" and hung up! Like a NICE weekend prior to losing my breasts is even possible???! These people are CLUELESS!!!!!
oh, so the surgery is on for Monday.....I have clearance from MY cardiologist :)
Tuesday, July 20, 2010
Ups.....and downs.....and UP AGAIN...I hope
7/20/10 I got a phone call this morning from Pati, she is a liason in the Scottsdale Women's Breast Health Center. She assured me that my sentinel node mapping will be performed in the Breast Center, NOT Nuclear Medicine. YAY :) She also said that local numbing is ALWAYS used by their doctors...another YAY :) And that using the EMLA numbing cream was fine, too YAY YAY YAY :) The day was looking up!
Then I get a call from Michaela, Dr. Walker's assistant. My EKG that was performed last week came back with RIGHT BUNDLE BRANCH BLOCK. RBBB occurs in medical conditions that affect the right side of the heart or lungs, so a finding of RBBB on the EKG ought to trigger a screening exam. These include blood clots to the lung, chronic lung disease, cardiomyopathy, and atrial and ventricular defects. However, RBBB also commonly occurs in normal healthy individuals, and the screening exam therefore often turns up no medical problems. The surgeon is afraid the anesthesiologist will cancel my surgery at the last minute unless he/she has an older EKG to compare to. A few phone calls later.. and no luck finding my old EKG. Granted it was probably done eight years ago....but someone should have record of it! So, it was decided I would have to have an Echocardiogram. Sure....no problem.... Cardiology offices have LOTS of STAT openings.....ha ha ha. While Michaela was calling the hospital to see if they could try to schedule an ECHO STAT....
I used to work in a cardiology office almost 11 years ago. Luckily, someone I knew still worked there (although she didn't really remember me). But, I explained my situation anyway, apologized profusely that I was putting her in the middle of all my drama, but Becky was awesome. She had the head nurse, Terri, call me this afternoon, and I am now scheduled for the test tomorrow at 7:00 AM , in the building right across the parking lot from the medical building I work in. I love it when a plan comes together :)
So, as long as the ECHO turns out OK....I should be good to go on Monday.....
Then I get a call from Michaela, Dr. Walker's assistant. My EKG that was performed last week came back with RIGHT BUNDLE BRANCH BLOCK. RBBB occurs in medical conditions that affect the right side of the heart or lungs, so a finding of RBBB on the EKG ought to trigger a screening exam. These include blood clots to the lung, chronic lung disease, cardiomyopathy, and atrial and ventricular defects. However, RBBB also commonly occurs in normal healthy individuals, and the screening exam therefore often turns up no medical problems. The surgeon is afraid the anesthesiologist will cancel my surgery at the last minute unless he/she has an older EKG to compare to. A few phone calls later.. and no luck finding my old EKG. Granted it was probably done eight years ago....but someone should have record of it! So, it was decided I would have to have an Echocardiogram. Sure....no problem.... Cardiology offices have LOTS of STAT openings.....ha ha ha. While Michaela was calling the hospital to see if they could try to schedule an ECHO STAT....
I used to work in a cardiology office almost 11 years ago. Luckily, someone I knew still worked there (although she didn't really remember me). But, I explained my situation anyway, apologized profusely that I was putting her in the middle of all my drama, but Becky was awesome. She had the head nurse, Terri, call me this afternoon, and I am now scheduled for the test tomorrow at 7:00 AM , in the building right across the parking lot from the medical building I work in. I love it when a plan comes together :)
So, as long as the ECHO turns out OK....I should be good to go on Monday.....
Sunday, July 18, 2010
A lesson for you to learn, from my past....
I had a stereotactic breast biopsy on the left breast in 2005. The lesion was not deep, and they entered at the top of my breast to get to the lesion. Came back as proliferative tissue with no atypia. Basically, "busy breasts" was what I was told then. They wanted to watch closely, with frequent mammograms, and cone compressions. I opted to just have an excision and get the thing out of there. Everything went according to plan...no complications.
Here's what you need to learn:
Right breast, the lesion is (as I have said before) deep in the tissue. The stereotactic breast biopsy was performed by entering more into the side of my breast and the core need biopsy kept taking little "bites" of tissue as it advanced. Well, I FELT one of the bites, and almost came off the table. Of course I really couldn't, because my right breast was trapped in a mammogram machine under the table I was lying face down on. The breast is pulled thru a hole in the table, and then the table is raised. Anyway, if you have a lesion deep in the breast tissue...ASK THEM TO GIVE YOU LIDOCAINE as the core needle advances! Don't wait until it's too late, like I did. Hopefully, they will honor your request. I have researched, and when the lesion is deep in the tissue, it is typical for the lidocaine not to reach it's designated target.
One last thing on this subject. I have been in pain since that biopsy on the right breast. I thought it was because there is cancer there, and things were not going to heal inside because of it. But what has been suggested from Melanie at Scottsdale Hospital is that I now possibly have nerve damage. Never even thought of that being a side effect. Researched that too....not a whole lot of info on the subject. But I did find one woman who said she was still in pain 3 months after her biopsy was performed.
My hope is that this info helps you to make an informed decision...and to be better prepared to ask the right questions :)
Love to All
Suzanne
Here's what you need to learn:
Right breast, the lesion is (as I have said before) deep in the tissue. The stereotactic breast biopsy was performed by entering more into the side of my breast and the core need biopsy kept taking little "bites" of tissue as it advanced. Well, I FELT one of the bites, and almost came off the table. Of course I really couldn't, because my right breast was trapped in a mammogram machine under the table I was lying face down on. The breast is pulled thru a hole in the table, and then the table is raised. Anyway, if you have a lesion deep in the breast tissue...ASK THEM TO GIVE YOU LIDOCAINE as the core needle advances! Don't wait until it's too late, like I did. Hopefully, they will honor your request. I have researched, and when the lesion is deep in the tissue, it is typical for the lidocaine not to reach it's designated target.
One last thing on this subject. I have been in pain since that biopsy on the right breast. I thought it was because there is cancer there, and things were not going to heal inside because of it. But what has been suggested from Melanie at Scottsdale Hospital is that I now possibly have nerve damage. Never even thought of that being a side effect. Researched that too....not a whole lot of info on the subject. But I did find one woman who said she was still in pain 3 months after her biopsy was performed.
My hope is that this info helps you to make an informed decision...and to be better prepared to ask the right questions :)
Love to All
Suzanne
time line......as it stands right now :)
I guess I failed to say what the surgery schedule will be...and thanks Betty for pointing that out :)
On July 26th, I am to be at the Piper Surgery Center at 8:00 AM to register. Then I will be taken by shuttle bus to The Women's Center for the Nuclear sentinel node mapping, which is scheduled for 10 AM. Whenever that process is finished, I will be taken by shuttle bus BACK to Piper Surgery Center...to wait....surgery is scheduled for 1 PM. First will be the sentinel node biopsy, then the bilateral mastectomy, then the tissue expanders will be installed. I will probably be in my room by around 6 PM. And I am supposed to be discharged the next day by Noon :)
Now, what I was also told: Be at the Scottsdale Hospital at 8:30 AM to register there, (not the Piper Surgery Center) and the sentinel node mapping is done in Nuclear Medicine. Then I will be taken by the shuttle bus over to Piper Surgery Center after the first procedure is done. Surgery still on the books for 1 PM.
Guess I'll find out where I'm REALLY supposed to be and how the sentinel node mapping will be performed....once I'm in the right place at the right time! sheesh!!!!!
On July 26th, I am to be at the Piper Surgery Center at 8:00 AM to register. Then I will be taken by shuttle bus to The Women's Center for the Nuclear sentinel node mapping, which is scheduled for 10 AM. Whenever that process is finished, I will be taken by shuttle bus BACK to Piper Surgery Center...to wait....surgery is scheduled for 1 PM. First will be the sentinel node biopsy, then the bilateral mastectomy, then the tissue expanders will be installed. I will probably be in my room by around 6 PM. And I am supposed to be discharged the next day by Noon :)
Now, what I was also told: Be at the Scottsdale Hospital at 8:30 AM to register there, (not the Piper Surgery Center) and the sentinel node mapping is done in Nuclear Medicine. Then I will be taken by the shuttle bus over to Piper Surgery Center after the first procedure is done. Surgery still on the books for 1 PM.
Guess I'll find out where I'm REALLY supposed to be and how the sentinel node mapping will be performed....once I'm in the right place at the right time! sheesh!!!!!
Friday, July 16, 2010
Hurry up and.......wait.............and wait............
7/15/10 Another lesson learned!
I really didn't know what was important to me during this process, until I learned yesterday what I don't like about Piper Cancer Center. And it's a little too late now to be changing things. Normally, one would think you go into a hospital building and whatever needs to be done is taken care of. NOT at the Piper Center, because it is part of the Scottsdale Hospital Campus. Hubby and I went from building to building to building yesterday in order to accomplish a few simple tasks.
Get my preop lab and EKG. We went into the building that said Piper Cancer Center, but that's not where the preop tests are done. Nooooo, that's across the street... ok, not bad, within walking distance of where the car is parked. Had to register in, just like I was being admitted to the hospital. Little strange but....ok. But before I could get my preop tests done, we had to meet with someone who went over every bit of my hospital stay. What I could and mostly would not be allowed to do. NO body lotion, no oil, no deodorant! This is not good....I live in the freaking desert, it was 112 degrees today...so ya want me dried up and smelly...oh, and ugly, because obviously no makeup either! Well, I hope they run screaming when they see me in that kind of condition!
So, finally get the preop crap out of the way. THEN I have an appointment at "Tina's Treasures" where I get fitted for my post surgery camisole and mastectomy bra. Unfortunately, my preop tests were scheduled at 7:30 and even with all hoopla, I was done by 8 AM. Hubby and I had to go back to the first building we were in, and sit and wait for close to an hour for my 9 AM fitting appointment. Oh, but wait, after they open the shop doors, I'm informed I have to REGISTER! But wait! I just registered for the preop labs...unfortunately, this is a different department.. and building! Fine....get registered again. Get fitted...the lady was nice, she had breast cancer twice....Tina was there, and my sales lady offered to bring Tina in so I could see her reconstruction job....ok....now that's getting a little weird. Sorry, but everyone heals differently...and I don't care to see how Tina turned out! I was told she'd be more than happy to show me! Again....no, thanks :[
As I was registering the second time, I was asked if I had pre-registered at Piper. I said I had pre-registered on~line at the Scottsdale Hospital website. Ummmm, no, wrong, I have to register at Piper Surgery Center. So, if you just go out the main doors, get in your car, drive allllll the way around the CAMPUS, go to the locked entrance gate, type in the access numbers...THAT'S where I can pick up the paperwork. All righty then....had troule finding the Piper Surgery Center, got directions from the receptionist at the Scottsdale Hospital, got back in the car and drove to the correct building, got the paperwork...and low and behold.....IT WAS THE SAME PAPERWORK I FILLED OUT AT THE PREOP LAB AND EKG BUILDING!!!!
Ergo, my lesson learned is to ask....IS THIS HOSPITAL SELF~CONTAINED???? or is it an entire CAMPUS??????
7/16/10
Today was less eventful. Had to go out to Dr. Gawley's office to go over all the pre-op, surgery, post-op what to expect kind of thing. Now again, there was confusion as to where I go FIRST when I get to the PIPER CAMPUS. After Brenna called Piper to re-verify (and she spoke to three people) I go and register at Piper Surgery Center, then I will be TRANSPORTED BY BUS to the Nuclear Med Dept for the sentinel node mapping. (I still can't wait to write about that one, because I've been given three scenarios in the past two days!). When that procedure is done, I get BACK ON THE BUS! to be escorted BACK to Piper Surgery Center where FINALLY I will be put under general anesthetic! WHOOOO HOOOOO!
Here's the time frame I was given: Be at Piper Surgery Center at 8 AM (I was told 8:30 AM yesterday) sentinel node mapping at 10 AM. Bilateral mastectomy to be around1 PM with tissue expander surgery to follow. Will probably get to a room around 6 PM. oh....and NOTHING TO EAT OR DRINK from MIDNIGHT the night before.....oh, sure... 112 degrees in the shade, no water, nooooo problem!
The final kicker for this morning.....I got a call from Scottsdale Breast Care Center, which is part of the Scottsdale/Piper CAMPUS. She wanted my mammogram films because they needed to decide HOW to proceed with the sentinel node mapping! I told her I wished I had known that yesterday....when I was OUT THERE!!!! My breast surgeon has the films...and the last time I saw Dr. Walker for my surgery consult, she told me she was "keeping them". I guess they just need to call a courier service....because I'm not taking them out there. sheesh!
Well, this is probably my last post until after surgery. This coming week should (hopefully) be uneventful. Therefore, the only posting I would be doing is yadda yadda yadda~ing about pre-op jitters. And no one needs to waste their time reading that!
Thanks to all who are following......I am sure I will have many more lessons learned in the following weeks and months, and I will share all of that with you.......... like it or not :)
I really didn't know what was important to me during this process, until I learned yesterday what I don't like about Piper Cancer Center. And it's a little too late now to be changing things. Normally, one would think you go into a hospital building and whatever needs to be done is taken care of. NOT at the Piper Center, because it is part of the Scottsdale Hospital Campus. Hubby and I went from building to building to building yesterday in order to accomplish a few simple tasks.
Get my preop lab and EKG. We went into the building that said Piper Cancer Center, but that's not where the preop tests are done. Nooooo, that's across the street... ok, not bad, within walking distance of where the car is parked. Had to register in, just like I was being admitted to the hospital. Little strange but....ok. But before I could get my preop tests done, we had to meet with someone who went over every bit of my hospital stay. What I could and mostly would not be allowed to do. NO body lotion, no oil, no deodorant! This is not good....I live in the freaking desert, it was 112 degrees today...so ya want me dried up and smelly...oh, and ugly, because obviously no makeup either! Well, I hope they run screaming when they see me in that kind of condition!
So, finally get the preop crap out of the way. THEN I have an appointment at "Tina's Treasures" where I get fitted for my post surgery camisole and mastectomy bra. Unfortunately, my preop tests were scheduled at 7:30 and even with all hoopla, I was done by 8 AM. Hubby and I had to go back to the first building we were in, and sit and wait for close to an hour for my 9 AM fitting appointment. Oh, but wait, after they open the shop doors, I'm informed I have to REGISTER! But wait! I just registered for the preop labs...unfortunately, this is a different department.. and building! Fine....get registered again. Get fitted...the lady was nice, she had breast cancer twice....Tina was there, and my sales lady offered to bring Tina in so I could see her reconstruction job....ok....now that's getting a little weird. Sorry, but everyone heals differently...and I don't care to see how Tina turned out! I was told she'd be more than happy to show me! Again....no, thanks :[
As I was registering the second time, I was asked if I had pre-registered at Piper. I said I had pre-registered on~line at the Scottsdale Hospital website. Ummmm, no, wrong, I have to register at Piper Surgery Center. So, if you just go out the main doors, get in your car, drive allllll the way around the CAMPUS, go to the locked entrance gate, type in the access numbers...THAT'S where I can pick up the paperwork. All righty then....had troule finding the Piper Surgery Center, got directions from the receptionist at the Scottsdale Hospital, got back in the car and drove to the correct building, got the paperwork...and low and behold.....IT WAS THE SAME PAPERWORK I FILLED OUT AT THE PREOP LAB AND EKG BUILDING!!!!
Ergo, my lesson learned is to ask....IS THIS HOSPITAL SELF~CONTAINED???? or is it an entire CAMPUS??????
7/16/10
Today was less eventful. Had to go out to Dr. Gawley's office to go over all the pre-op, surgery, post-op what to expect kind of thing. Now again, there was confusion as to where I go FIRST when I get to the PIPER CAMPUS. After Brenna called Piper to re-verify (and she spoke to three people) I go and register at Piper Surgery Center, then I will be TRANSPORTED BY BUS to the Nuclear Med Dept for the sentinel node mapping. (I still can't wait to write about that one, because I've been given three scenarios in the past two days!). When that procedure is done, I get BACK ON THE BUS! to be escorted BACK to Piper Surgery Center where FINALLY I will be put under general anesthetic! WHOOOO HOOOOO!
Here's the time frame I was given: Be at Piper Surgery Center at 8 AM (I was told 8:30 AM yesterday) sentinel node mapping at 10 AM. Bilateral mastectomy to be around1 PM with tissue expander surgery to follow. Will probably get to a room around 6 PM. oh....and NOTHING TO EAT OR DRINK from MIDNIGHT the night before.....oh, sure... 112 degrees in the shade, no water, nooooo problem!
The final kicker for this morning.....I got a call from Scottsdale Breast Care Center, which is part of the Scottsdale/Piper CAMPUS. She wanted my mammogram films because they needed to decide HOW to proceed with the sentinel node mapping! I told her I wished I had known that yesterday....when I was OUT THERE!!!! My breast surgeon has the films...and the last time I saw Dr. Walker for my surgery consult, she told me she was "keeping them". I guess they just need to call a courier service....because I'm not taking them out there. sheesh!
Well, this is probably my last post until after surgery. This coming week should (hopefully) be uneventful. Therefore, the only posting I would be doing is yadda yadda yadda~ing about pre-op jitters. And no one needs to waste their time reading that!
Thanks to all who are following......I am sure I will have many more lessons learned in the following weeks and months, and I will share all of that with you.......... like it or not :)
Saturday, July 3, 2010
A lot of learning to do
First thing I need to do is learn more about creating a blog. So, we'll see if this works or not. Well, I checked it, and it seems to be working. First mission accomplished!
I wish that all the upcoming events would be so easy! Unfortunately, I know enough to know better. I never thought I would create a blog, or that I really had anything to say. But things change quickly sometimes, so now I do have things to say....and hopefully writing this will help others facing the same challenges...and for me to come to terms with what lies ahead.
I've been diagnosed with invasive breast cancer, right breast. Due to a history of abnormal mammograms, cone compression mammograms, and stereotactic breast biopsies, I have opted to have a bilateral mastectomy. I meet with the plastic surgeon on July 7th, 2010...so I will know more about that phase soon enough.
My reasoning for opting for the more extensive surgery, rather than a lumpectomy is pretty simple. I won't have to worry about future cone compression mammograms and biopsies. Due to very dense fibrocystic tissue, my mammograms tend to be harder to read, and therefore easier for things to be missed. I have to undergo surgery, so I might as well take care of things now before I get any older, and the surgery becomes even harder to recover from. The second reason is due to my personal history of skin cancer. When a lumpectomy is performed, it will definitely be followed with radiation therapy. Radiation therapy is known to accelerate any possible skin cancer. I had Squamous Cell Carcinoma just below my lower lip...mid-line over to left corner. Since I would like to keep the rest of my face for as long as I can, I'll go with losing both breasts now. Also, because I am adopted, I have no knowledge of my birth~family history. So, all this combined, I did not make this decision lightly, but it is a decision I am comfortable with....terrified....but it's something I've come to terms with and trying to stay positive.
I have read so many articles on the subject of breast cancer, and about all the procedures that may need to be done, and some of the descriptions want to make me run away to live on a deserted island, and others make a procedure seem like a walk in the park....only to find out first hand that they had to have been lying thru their teeth when they wrote the article!
My next post will be after I see the plastic surgeon........
July 6th 11:12 PM Not sleeping much these days. Sleep about three hours, then WIDE awake with everything running through my mind. The one thing I keep thinking:
I am absolutely terrified of what lies ahead....what Stage this cancer is........
7/7/10 Appointment with Dr. Gawley www.gawleyplasticsurgeon.com went about the way I thought it would. His office is very nice, the staff are efficient and friendly, and he was too :) I had thought I might be a candiate for the nipple saving procedure, but unfortunately gravity hit even more than I had thought! The plan is: tissue expanders go in after mastectomy is done. Over time, saline solution will be added to the extenders. Eventually a new nipple will be created and then they will tattoo them :) It will be my first tattoo! How thrilling!!! Depending on what OTHER issues arise, like Chemo or the medications that zap every bit of Estrogen out of my system, and those issues could possibly delay my "expansion".... Dr. Gawley's assistant said to plan to be their patient for about a year! Maybe in that amount of time, I'll think of a few other things that need to be lifted....hmmmmmmmmmmm :)
Now that this appointment has been taken care of, I find that I now have MORE appointments. I go to the hospital, (it's called The Piper Center, in Scottsdale, AZ) on July 15th for all my pre-op labs and EKG. After that appointment I get to go to Tina's Treasures at the Piper Cancer Center to be fitted for a Mastectomy Bra and a Post-Operative Garment....whatever that is! I was given a prescription for the items! I was told Dr. Gawley is very specific about what he wants his patients to use post-operatively. THEN on July 16th, I go back to Dr. Gawley's office for a "Pre-op Visit" to go over all my labs, etc...... Maybe I can have the week of July 19th to actually devote to working at the office and just do the usual mundane things! My surgery date is now carved in stone...Monday July 26th. Don't have a time, altho' it should be early. They will do the thrilling sentinel node marking and biopsy. I'll be awake for the marking part....that's where my nipple will be injected with radioactive dye. Then about two hours later, after the dye has had time to find the primary (sentinel) node, I'll be taken to surgery for the biopsy and then mastectomy. While the mastectomy is being performed, the lab will be processing those lymph nodes to see if there are any cancer cells. THAT'S when my cancer will be staged...probably a week or so later, I will have to go back to Dr. Walker (my breast surgeon) for those results. Then it will be decided what chemical treatment I may need...but I won't worry about that today...............I'll worry about that tomorrow.....ot possibly later today! :)
7/9/10 A day of downs and ups.......
Since I had not heard from my surgeon, I decided to be pro-active and see what time I should be at the hospital on July 26th. I was told my surgery would be at 1 PM, and that of course, I would have to be NPO (nothing by mouth) after midnight the night before. Not the best news I've heard...but then I was told that I would need to be at the hospital early because of the sentinel node marking. This is when I start having my first melt~down at work.......LESSON LEARNED.....NOT ALL NUCLEAR MED DEPARTMENTS ARE THE SAME! The Piper Cancer Center in Scottsdale, AZ will inject the radioactive dye WITHOUT ANY NUMBING MED, will either inject into the areola of the breast OR possibly close to the cancer nodule (not a good scenario for me, since my lesion is deep in the breast behind the nipple) and then wait FOUR HOURS before doing the scan so that the sentinel node can be marked. Not all Nuclear Departments do it this way.....this is from the Dr. Mengele School of Medicine! All this news was a little much to bear.....so, that was the down (meltdown) part of my day.
When I got home from work, not in the best of moods.....my son and granddaughter came for a visit. Can't be moody when my 3 1/2 granddaughter says "Here Gamma, I have a present for youuuuuuuu" and gives me a Dora the Explorer sticker :) Then the mailman came and I received the most wonderful box of presents from Susie..my very best friend :) Thanks, Susie......your timing was impeccable :) A few of the items, since I'm sure you'd say...well, what the heck was in the box?....a lovely white night gown with a lace insert on the bodice and a light bed jacket in black and white. TWO Moody Blues t-shirts (one for hubby and one for me), a very fancy notepad, some things to eat and somethings to drink, and to top it off, Flexible Straws...because no one ever thinks of them and you need them for the hospital. By the way, each item had an explanation of it's importance :) LOVED that part, too! Hubby got his own little bag of goodies to take to the hospital, so that he won't be too bored waiting on me to get to a hospital room around 5 PM ........
So, again.....thank you Susie from the bottom of my heart :)
7/15/10 Getting closer!
This morning I go in for my pre-op lab work and EKG. Then to "Tina's Treasures" to get my post-mastectomy bra and camisole. I thought I should have two bras, so I ordered one on line. Probably a mistake...best to go and get sized first...THEN get a second one. Another lesson learned. Because I think the one I ordered on line is too big...it sure doesn't fit right! I'll see what size I'm fitted for today... then send the other one back. At least the on-line company is fine about returns! I did think to check that out before I ordered :)
I was told yesterday that Piper Cancer Center will work with me on pain management for the sentinel node marking. That they will give me numbing med... "but it doesn't always work". Dr. Walker's assistant said that if the anesthesiologist came in early enough to start the IV and to talk to me, maybe he/she could give me something. Guess I'll be asking to speak to the anesthesiologist when I check in at the hospital :) Tomorrow is another busy day....go back to Dr. Gawley's office. If I learn anything at that visit.......I'll pass it along!
I wish that all the upcoming events would be so easy! Unfortunately, I know enough to know better. I never thought I would create a blog, or that I really had anything to say. But things change quickly sometimes, so now I do have things to say....and hopefully writing this will help others facing the same challenges...and for me to come to terms with what lies ahead.
I've been diagnosed with invasive breast cancer, right breast. Due to a history of abnormal mammograms, cone compression mammograms, and stereotactic breast biopsies, I have opted to have a bilateral mastectomy. I meet with the plastic surgeon on July 7th, 2010...so I will know more about that phase soon enough.
My reasoning for opting for the more extensive surgery, rather than a lumpectomy is pretty simple. I won't have to worry about future cone compression mammograms and biopsies. Due to very dense fibrocystic tissue, my mammograms tend to be harder to read, and therefore easier for things to be missed. I have to undergo surgery, so I might as well take care of things now before I get any older, and the surgery becomes even harder to recover from. The second reason is due to my personal history of skin cancer. When a lumpectomy is performed, it will definitely be followed with radiation therapy. Radiation therapy is known to accelerate any possible skin cancer. I had Squamous Cell Carcinoma just below my lower lip...mid-line over to left corner. Since I would like to keep the rest of my face for as long as I can, I'll go with losing both breasts now. Also, because I am adopted, I have no knowledge of my birth~family history. So, all this combined, I did not make this decision lightly, but it is a decision I am comfortable with....terrified....but it's something I've come to terms with and trying to stay positive.
I have read so many articles on the subject of breast cancer, and about all the procedures that may need to be done, and some of the descriptions want to make me run away to live on a deserted island, and others make a procedure seem like a walk in the park....only to find out first hand that they had to have been lying thru their teeth when they wrote the article!
My next post will be after I see the plastic surgeon........
July 6th 11:12 PM Not sleeping much these days. Sleep about three hours, then WIDE awake with everything running through my mind. The one thing I keep thinking:
I am absolutely terrified of what lies ahead....what Stage this cancer is........
7/7/10 Appointment with Dr. Gawley www.gawleyplasticsurgeon.com went about the way I thought it would. His office is very nice, the staff are efficient and friendly, and he was too :) I had thought I might be a candiate for the nipple saving procedure, but unfortunately gravity hit even more than I had thought! The plan is: tissue expanders go in after mastectomy is done. Over time, saline solution will be added to the extenders. Eventually a new nipple will be created and then they will tattoo them :) It will be my first tattoo! How thrilling!!! Depending on what OTHER issues arise, like Chemo or the medications that zap every bit of Estrogen out of my system, and those issues could possibly delay my "expansion".... Dr. Gawley's assistant said to plan to be their patient for about a year! Maybe in that amount of time, I'll think of a few other things that need to be lifted....hmmmmmmmmmmm :)
Now that this appointment has been taken care of, I find that I now have MORE appointments. I go to the hospital, (it's called The Piper Center, in Scottsdale, AZ) on July 15th for all my pre-op labs and EKG. After that appointment I get to go to Tina's Treasures at the Piper Cancer Center to be fitted for a Mastectomy Bra and a Post-Operative Garment....whatever that is! I was given a prescription for the items! I was told Dr. Gawley is very specific about what he wants his patients to use post-operatively. THEN on July 16th, I go back to Dr. Gawley's office for a "Pre-op Visit" to go over all my labs, etc...... Maybe I can have the week of July 19th to actually devote to working at the office and just do the usual mundane things! My surgery date is now carved in stone...Monday July 26th. Don't have a time, altho' it should be early. They will do the thrilling sentinel node marking and biopsy. I'll be awake for the marking part....that's where my nipple will be injected with radioactive dye. Then about two hours later, after the dye has had time to find the primary (sentinel) node, I'll be taken to surgery for the biopsy and then mastectomy. While the mastectomy is being performed, the lab will be processing those lymph nodes to see if there are any cancer cells. THAT'S when my cancer will be staged...probably a week or so later, I will have to go back to Dr. Walker (my breast surgeon) for those results. Then it will be decided what chemical treatment I may need...but I won't worry about that today...............I'll worry about that tomorrow.....ot possibly later today! :)
7/9/10 A day of downs and ups.......
Since I had not heard from my surgeon, I decided to be pro-active and see what time I should be at the hospital on July 26th. I was told my surgery would be at 1 PM, and that of course, I would have to be NPO (nothing by mouth) after midnight the night before. Not the best news I've heard...but then I was told that I would need to be at the hospital early because of the sentinel node marking. This is when I start having my first melt~down at work.......LESSON LEARNED.....NOT ALL NUCLEAR MED DEPARTMENTS ARE THE SAME! The Piper Cancer Center in Scottsdale, AZ will inject the radioactive dye WITHOUT ANY NUMBING MED, will either inject into the areola of the breast OR possibly close to the cancer nodule (not a good scenario for me, since my lesion is deep in the breast behind the nipple) and then wait FOUR HOURS before doing the scan so that the sentinel node can be marked. Not all Nuclear Departments do it this way.....this is from the Dr. Mengele School of Medicine! All this news was a little much to bear.....so, that was the down (meltdown) part of my day.
When I got home from work, not in the best of moods.....my son and granddaughter came for a visit. Can't be moody when my 3 1/2 granddaughter says "Here Gamma, I have a present for youuuuuuuu" and gives me a Dora the Explorer sticker :) Then the mailman came and I received the most wonderful box of presents from Susie..my very best friend :) Thanks, Susie......your timing was impeccable :) A few of the items, since I'm sure you'd say...well, what the heck was in the box?....a lovely white night gown with a lace insert on the bodice and a light bed jacket in black and white. TWO Moody Blues t-shirts (one for hubby and one for me), a very fancy notepad, some things to eat and somethings to drink, and to top it off, Flexible Straws...because no one ever thinks of them and you need them for the hospital. By the way, each item had an explanation of it's importance :) LOVED that part, too! Hubby got his own little bag of goodies to take to the hospital, so that he won't be too bored waiting on me to get to a hospital room around 5 PM ........
So, again.....thank you Susie from the bottom of my heart :)
7/15/10 Getting closer!
This morning I go in for my pre-op lab work and EKG. Then to "Tina's Treasures" to get my post-mastectomy bra and camisole. I thought I should have two bras, so I ordered one on line. Probably a mistake...best to go and get sized first...THEN get a second one. Another lesson learned. Because I think the one I ordered on line is too big...it sure doesn't fit right! I'll see what size I'm fitted for today... then send the other one back. At least the on-line company is fine about returns! I did think to check that out before I ordered :)
I was told yesterday that Piper Cancer Center will work with me on pain management for the sentinel node marking. That they will give me numbing med... "but it doesn't always work". Dr. Walker's assistant said that if the anesthesiologist came in early enough to start the IV and to talk to me, maybe he/she could give me something. Guess I'll be asking to speak to the anesthesiologist when I check in at the hospital :) Tomorrow is another busy day....go back to Dr. Gawley's office. If I learn anything at that visit.......I'll pass it along!
Subscribe to:
Comments (Atom)