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Mar 30, 2014 11:01AM
Hi jogyger818! I'm so sorry that you've been having to deal with this...It sucks, doesn't it?!? On March 12, 2013 I had a bilateral mastectomy and reconstruction with implants. They put tissue expanders at the time of the mastectomy and then starting on April 25 I went through 8 rounds of chemo - 4 of adriamycin and cytoxin and 4 of taxol. It was one round of chemo every 2 weeks and I finished my last treatment on August 1.
My oncologist (Dr. Neelima Denduluri of Virginia Cancer Specialists) had dealt with a couple patients who had had invasive secretory carcinoma (ISC) in the past and for my case she consulted with other oncologists around the world to make sure my course of treatment was the ideal path. My breast surgeon (Dr. Stephanie Akbari of Virginia Hospital Center) and my oncologist consulted on my case, too. Dr. Akbari requested a pathology report of my tumor from the biopsy they'd done. Here are the notes I took from our meeting about ISC:
- doesn't play by the rules: under a microscope it looks bad, but the prognosis based on other cases is good
- not interested in lymph nodes; just sits there
- very rare; fewer than 100 women per year are diagnosed with it; women in their 20s are the ones who usually get it
- if I had a lumpectomy they would recommend radiation; if I did a mastectomy no radiation would be necessary (as long as the lymph nodes tested negative)
- they would check my lymph nodes by doing a sentinel node biopsy - just taking a few key lymph nodes to see if the cancer had reached those yet
- after surgery they would do a full pathology report on the tumor and then my oncologist could determine the best course of treatment (chemo?)
- secretory carcinoma is always triple negative, but don't read stuff online about triple negative cancers because ISC is different...but they still recommend chemo because triple negative cancers are aggressive because they have no receptors (so chemo pills like tamoxifen wouldn't work)
- they will send away for molecular profiling ("mammoprint") which will take 10-14 days and will give us more information about the triple negative (by the way - this ended up not being covered by my Aetna insurance and the company that performed it - Agendia - sent me a letter to settle the account for $500 which I ended up paying)
- I have (had!) dense breast tissue so mammograms didn't show things very well, so I would have to get an MRI to be able to see much more (98%)
- I should get tested for BRCA1 & BRCA2 because my aunt had breast cancer in her 40's (the common ductal kind), even though she also tested negative for BRCA (I ended up testing negative for it, too) because there's a higher incidence of BRCA positive genes in triple negative cancers
- It's better to err on the side of caution because this cancer is so rare. Because of my age (a few weeks shy of my 33rd birthday at diagnosis) having chemo would give me the best shot at making sure we kick this cancer in the butt and I can go on to live a long life.
- Kind of surgery I would choose would be based on the size of the tumor, the location, and how big my breasts are - doesn't matter what kind of cancer I have.
Since my tumor was behind my nipple and I have small breasts, I went for the mastectomy because there would be nothing left if they just did a lumpectomy. And I decided to do a bilateral mastectomy because I didn't want to have to worry about the cancer coming back on the other side. Plus, it would make any future follow up tests a little easier because if I still had my original breast on one side, I'd have to do a mammogram on that side and an MRI on the other... And this would also allow me to more easily make sure both breasts were as close to the same size as possible.
There are other options for reconstruction (using muscle from other parts of your body) but I didn't qualify for any of those options since I'm thin. The tissue expanders felt weird - they're like implants but with a firm back to them - not soft all the way around like implants. The final (silicone) implants feel more firm than I'd like. I got a bigger size than I was before and I'm still trying to get used to that. Laying on my stomach in yoga practice feels uncomfortable because I've got two silicone packages inside my chest. But from the outside they look good...The implants are tear-drop shaped so they're more natural looking than circular implants, and my plastic surgeon did some fat grafting to smooth out the area around the implants. (He said he would take the fat from wherever I wanted; I have a little bit of fat over my abs so I asked to take it from there. My abs were way more sore than my chest after that surgery!)
If you have the bilateral mastectomy, talk to your plastic surgeon about placing the drains on the side of your breasts where the scars can be hidden when you're wearing a bra or bikini top. Some surgeons put them lower on the torso where it's impossible to hide them. My plastic surgeon was great (Dr. Steven Davison of Davinci Plastic Surgery in DC).
There are no guarantees that the cancer won't ever come back, but with a bilateral mastectomy the chances are something like 1%. A friend of mine had a bilateral mastectomy after having had lumpectomies (she's BRCA positive, I think she had the ductal kind of breast cancer) and her cancer ended up coming back -- but that's super rare. She then had chemo and radiation and just finished all of that this month.
I know how overwhelming it is to make all of these decisions. In my case, I chose to follow my doctor's recommendations to treat it as aggressively as possible because I have so much more that I want to do in my life. I've fully recovered now except for needing nipple reconstruction on the one breast where the tumor was. My hair is growing back, I've got tons of energy, and while I'm always worried that the cancer will come back, that just drives me to live life to its fullest now. Good luck making the choices that work best for you! Big hugs!
Invasive secretory carcinoma
1/31/2013, 2cm, Stage II, Grade 2, ER-/PR-, HER2-
3/12/2013 Lymph node removal: Right; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement