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Old 01-05-2015, 07:36 PM   #12
Debbie L.
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Join Date: Jul 2006
Posts: 463
Re: failed reconstruction following prophylactic mastectomy

Rinaina, so sorry you're having these hard times. I have not had reconstruction, so have nothing to contribute to that discussion.

But I cannot resist a ramble, totally devoid of evidence to support it. I'm usually all about evidence-based practice, but what follows is NOT evidence-based, at all (disclaimer).

About a year after bilateral mastectomy (but only a few months after completion of radiation), I had a pouch of fat/breast tissue persisting on the bc side, which annoyed me both cosmetically and risk-wise (weren't we trying to get rid of breast tissue to decrease the risk of a local recurrence?). I pointed this out to my uber-anal surgeon, and he agreed we should remove it, in a simple, quick outpatient surgery (also removing one of higher, more-visible tattoo marks from rads). It WAS a quick, simple, procedure -- but I developed a seroma and a RAGING infection on that whole side of my chest. I think it got so far out of hand because his office nurse blew off my complaints, but that's another issue. I got really sick, before he saw me himself, drained the gross amounts of pus, and changed antibiotics. Apart from wishing I hadn't gotten so sick, I didn't think anything of it, cancer-wise, at the time.

But then, I read a book about a Dr. Coley, who at the turn of the last century, had done "research" (in quotes because research then was very different from what it is now) on seemingly spontaneous remissions of cancer after infections, and had tried to induce same in patients. The book is called "A Commotion in the Blood", by Stephen S. Hall. It was recommended as reading for me (before a DOD/Era of Hope seminar on the topic that we co-chaired) by Lupe Salazar (UofW and Nora Disis) -- so not something out of the mainstream. It's an easy and entertaining read. For me, it was hard to put down, better than a murder mystery!

With my stage 3 diagnosis, and losing the toss in the adjuvant Herceptin trial, I really hadn't expected to be still here. As the years have gone on, I've been delighted to see more and more not just about vaccines for cancer, but about harnessing (tricking) the immune system in a more general way to stop cancer. I think back to that raging infection I had. Could that be what tipped the scales for me? Of course, no way to know. It's a crap shoot. But, I offer this ramble in hopes that maybe you'll look on your troubles with infection in a slightly more positive perspective?

Best of luck to you. Let us know more, as you move forward.

Debbie Laxague

PS to Hongdo: I don't think most women have radiation after mastectomy. In fact, some women choose mastectomy over lumpectomy to avoid radiation. It's recommended if there are a lot of positive axillary nodes, but in the range of 1-3+ nodes there is not a lot of evidence of benefit (yet). And typically, I think, not recommended at all if the nodes are negative.
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3/01 ~ Age 49. Occult primary announced by large (6cm) axillary node, found by my husband.
4/01 ~ Bilateral mastectomies (LMRM, R elective simple) - 1.2cm IDC was found at pathology. 5 of 11 axillary nodes positive, largest = 6cm. Stage IIIA
ERPR 5%/1% (re-done later at Baylor, both negative at zero).
HER2neu positive by IHC and FISH (8.89).
Lymphovascular invasion, grade 3, 8/9 modified SBR.
TX: Control of arm of NSABP's B-31 adjuvant Herceptin trial (no Herceptin, inducing a severe case of Herceptin-envy): A/C x 4 and Taxol x 4 q3weeks, then rads. Raging infection of entire chest after small revision of mastectomy scar after completing tx (significance unknown). Arimidex for two years, stopped after second pathology opinion.
2017: Mild and manageable lymphedema and some cognitive issues.
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