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.....
Friday, September 24, 2010
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 :)
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