The fork in the road

Juana, the most important thing to remember here is that having a mastectomy will not prevent mets. Mets, if they are going to happen, will occur no matter what surgery is done. That's why there is adjuvant therapy such as chemo and hormone therapy--to try and knock out any cancer cells that may have broken off from the tumor.

The second most important thing to remember is that in terms of local control (preventing a local recurrence of the first tumor or the development of a new primary tumor), mastectomies are not 100% effective. It is impossible to remove all breast tissue, and women have been known to recur along the mastectomy scar line, in the chest wall, and in the lymph nodes.

I'm not trying to talk you out of a mast--I just want to make sure you realize what it can and cannot do for you.

Here is a link to info on staging from this site:

 http://www.breastcancer.org/symptoms/diagnosis/staging.jsp

You asked if tumor growth is the same thing as breast cancer cell growth. Yes, it is.

Hope that helps a bit.

juana--I don't have any answers for you, but I wanted to give you  some good news that has inspired me. My mom had ILC many years ago--lumpectomy, radation and tamoxifen--and is now a survivor of over 22 years without a recurrence.

Anne

wallycat - i had the very same question. i just could not wrap my head around how cancer worked. i kept thinking that if i had my breasts removed, then the cancer would have nowhere to go but inside my chest and elsewhere. it took many conversations with my surgeon and med oncs for me to finally understand the role of statistics and how erratic cancer is.

juana12 - i also had a chest wall tumor, 1mm from the chest wall. my surgeon could only get 1mm margin, and the tumor board and my med onc at UCSF said they consider 2mm clean when dealing with chest wall tumors, not 1mm. so i had the option of more surgery or radiation (in addition to chemo, which i had to have either way because i am triple negative and the tumor was grade 3). i opted for radiation because i wanted to do everything i could to eradicate any cancer cells still in my body. i chose to have a double mastectomy for several reasons: my mother and grandmother both died of breast cancer; triple negative and grade 3 = very aggressive cancer; i did not want to deal with mammograms again and worry about the results. so i had the mastectomy, chemo, and i'm just now finishing radiation. i am very happy that i had the mastectomy - the surgery was very easy, painless, and i was back to work and driving, etc., in 3 days. i love my new body and i love not having to wear bras.  but mainly i have less anxiety about breast cancer recurring in the breast tissue - although i can still happen. with a mastectomy, they leave behind 2% of the breast tissue. i was told that recurrence would most likely happen along the scar area, so i have to be vigilent about self-exams and also go for bloodwork and tumor markers every 3 months for a year, then every 4 months after that. i like the fact that i can really feel everything along the chest wall on my self-exams. if i still had breasts, i would not be able to. i hope you can find a med onc that you like and trust, and one who can clearly answer your questions about chest wall recurrence. 

Juana - Part of the stress of dealing with a breast cancer diagnosis is this whole bizarre thing where there aren't definite answers for some things. In general, it seems that most breast cancer is a surprising shock to the woman diagnosed with it, and it also seems that there is a big gray area with regard to how to treat smaller cancers. I had a smallish ILC tumor very close to the chest wall (it was high up on the left side, basically pinned between the skin and the chest wall, but not involved with the tissues of either area). After reading and reading and reading, I came to the conclusion that while a single or double mastectomy could reduce my chances of a local recurrence, having more surgery wouldn't do anything about the risk of mets. In addition, I was very concerned about all of the possible problems that could occur with reconstruction surgery (as explained in the twelve-page release form I got from a PS as well as on sites like "The Smart Woman's Guide to Reconstruction"). My tumor was small enough and we got good enough margins (we weren't going to get GREAT margins due to the location of the tumor) that I didn't NEED to have the entire breast removed.  The idea of losing one or both breasts to such a small tumor seemed a bit much to me. I had radiation and am now taking Tamoxifen (oncotype score of 11 - no chemo). So far, I am happy to have more time with minimal changes to my body.

I've had one follow-up mammogram so far, and the only bad part really was the stupid letter from the radiologist that sounded ominous but really just said "you have changes to your tissue as expected from radiation, and don't forget to come back in six months." My personality is a bit ADD, probably, where I'm not thinking and worrying all the time about a recurrence of the cancer. Dr. Susan Love (you should read The Breast Book - very informative) does say that for some women, single or even double mastectomy is the way to go simply because the worry of ongoing follow-up is overwhelming. For me, what scares me on a bad night is wondering about mets, not a lump in my breast, and no surgery could make that worry disappear because no surgery reduces the risk of spread. Theoretically, I could get a new lump in a breast, but with my intense follow-up and the less-dense nature of my breasts due to the Tamoxifen, hopefully a new lump could be found early. If someone had told me that by removing as much breast tissue as possible I could totally avoid ever experiencing a new cancer or a spread, I'd have opted for more surgery - but for a reduction in my recurrence risk (to me minimal, since my first occurance was technically in an area hard to remove with mastectomy, and the lobes are at the back and edges of the breast anyway) and no reduction in mets risk, I just couldn't do it. From what I've read about ILC and from what my onc says (all educated guesses, really), with my size of tumor and grade I'm more likely to see this come back in 10 - 15 years, if it does come back. I can always do more surgery later if we learn more. You can't put back tissue you've removed. There is an excellent chance that I'm done with breast cancer, and will die of something else years and years from now.

Since it's not clear-cut medically, it really becomes a personal decision. We are all different, and all we can do is to make what feels like the best choice to us and move forward without looking back.

Coleen