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!

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.

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

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.

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

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.

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!

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.

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!