Cancer after PBM?

Leigh74-

I'm interested in learning more about your situation. I was diagnosed in June, had a lumpectomy in July, found out in Aug I'm BRCA2+, and started chemo in Sept. I finish up with chemo in Nov ( I'm doing 4 treatments of TC). I switched docs when I started chemo to be in the cold cap clinical trial. My current oncologist HIGHLY suggest I have a bi-lateral after chemo vs starting the 6 weeks of radiation that is currently planned since I'm BRCA+. I'm scared and not sure what to do..... I'm afraid if I don't do it, I'll have recurrence and then I read your post about it recurrence. I can't imagine what you are going through!

mc_in_nc

Leigh - I'm also brca2 and have a question about your situation. Did you find the tumor in the incision area? How do they know it wasn't a recurrence? Different breast?

Thanks Beesie - I wasn't really thinking! PBM would be with no cancer. I had one of those, I should know. Still curious, though, where it showed up. I have no idea where the residual breast tissue would reside (I have implants).

Peachtree - your question brings up another question, for me. I have read that being pre-menopausal imparts some protection from BC for brca2+ women. In my family, all the BC cases occurred within a year or two after menopause (7 known cases). I asked my gyn-MO brca researcher about this, in the context of actually taking estrogen, rather than suppressing it. She agreed with the premise of being pre-menopausal being protective, but then went on to answer: "Bu it's complicated." I wish I had pursued that answer, but I didn't. And I'm not sure if the "protective" applied to all women, or just within the context of discussing brca2+ women - because newer studies by Yale are advocating HRT as a BC preventative. Ofcourse, once the ER+ BC appears, taking estrogen is out of the question, but would HRT be a good thing to do prophylactically for brca2+ women???

Kam...you had a question about where breast tissue might remain after a PBMX. I am in early stages of planning my PBMX and I talked about this specifically with my BS last week.

Where tissue remains can depend on the incisions, the skill and experience of the surgeon, and the woman's own body.

I have read quite a bit about it, but I wanted to review my BS's own experience and specifically where tissue usually may remain. He told me that, as we already know, not all tissue can be removed. In my case, as I am planning a skin-sparing at this point, there will likely be some remaining tissue in the outer quadrant of the breast, towards the armpit. This is mostly because they are NOT removing any nodes in a PBMX, and it can be difficult to "untwine" the nodes/lymph system from the tissue, especially due to the manner in which they cut for a skin-sparing. He tries his best, but it is impossible to remove it all.

Also, he reviewed that if I chose a nipple sparing some breast tissue will remain under/near the nipple. Some surgeons do a quick biopsy/pathology of this tissue behind nipple during surgery to determine if there is anything suspicious (at which point will remove nipple) but some do not. I believe I read somewhere once that doing a biopsy behind nipple can increase risk of the nipple failing so some surgeons prefer not to do it. So any woman undergoing this type of surgery need to ask the surgeon what their practice is. There is still a lack of really long term research on the efficacy of nipple sparing procedures...though they certainly can lead to better cosmetic results, and so every woman kind of has to decide for herself. Likely it does not reduce risk AS much as skin sparing, but it is still reducing risk dramatically and for some it may reduce risk enough for their own personal comfort.

Also..it is important to realize there are different kinds of skin sparing/nipple sparing. For example, subcutaneous mastectomies used to a lot more popular a few years ago, but I am not sure how often they are used now with newer nipple sparing techniques that actually "move" the nipple. I do see women still getting it though and it definitely can lead to great cosmetic results. Subcutaneous mastectomies are nipple sparing mastectomies where they go in through an incision in the IMF and leave the skin, nipple, and areola intact, and incisions and scars are hidden in the IMF (similar to an augmentation). A bit more tissue *can* be left behind than compared to a simple mx, and possibly a skin sparing or a newer nipple sparing technique. I read a study once that reviewed the efficacy of prophylactic mastectomies in high risk women (I do not think BRCA women were included, but rather those with high risk families...as it was still very early in gene testing) which did find efficacy to be 90%+ risk reduction, but also there was something in there that of the seven diagnosis that came after PBMX, all had been in women who had a subcutaneous mastectomy.

Oh, here is a little blurb about that study. It was from 1998 and looked at risk reduction of PBMX for high risk women, 90% of whom had subcutaneous mastectomies (you might have to click on the proper tab for subcutaneous mastectomy, not sure if the link will actually open to it).

http://www.facingourrisk.org/info_research/risk-management/mastectomy/index.php

I think it is fair to say a PBMX will reduce risk by around 90%, but that does not mean it reduces risk to 0%. This is why one must continue with self-exams and be aware of any changes. Unfortunately I am indeed aware of people who got breast cancer AFTER a PBMX. It is such a personal decision, and for many knowing that it is not a guarantee may have them prefer to keep their breasts and take that risl. For myself, I know a post-PBMX cancer dx is definitely a possibility, but I believe that if I fell on that unlucky side I would at least know I had done what I could have to prevent it, but I know if I did not do it than I would be kicking myself for not doing it. If I get a PBMX and never get breast cancer, I will never know if I would have if I hadn't, but that is something I feel okay living with. This is just my own personality and comfort with risk and decision making at play

DiveCat - thank you for your responses. I had skin-sparing BMX and it seems you are saying any residual breast tissue resides nearer the armpit side, but also, maybe, in the IMF?

I need to find the Journal article that discussed estrogen being protective (not HRT) for pre-menopausal brca2+ women. The rule certainly held true in my family and as I said, my brca researcher GYN/MO agreed with the premise. I know it did not hold true in my friend's case, though she might have been peri-menopausal at 48.

A small update to the discussion of my own family history with brca2+. My cousin (in Canada) was recently tested. She had cancer, also as the rest of us did, post-menopausal (and took HRT right after and still does 7 years later). Her brca2+ test came out negative! I'm still in disbelief. Our mothers are sisters and both had breast cancer at age 53, as well as another of their sisters. So now, I'm the only female of 5 daughters from these 3 sisters who has gotten BC as brca2+. And I'm the youngest of the 5.

I suppose even with the brca2 gene our BC's could be sporadic or in a different lexicon, wildtype. I've always wondered about that when it comes to clinical trials for brca only and or personalized chemo (eg I got an extra bonus chemo due to brca status)....what if the patient's BC was not due to their faulty gene? For a clinical trial, this would be extra noise.

Thank you for posting your story Leigh. I think it really sucks (can’t think of a better way to put it) that you did everything to prevent it and still got the BC diagnosis. But probably because of the PBM you were able to spot it early. I am 2 months out of my PBM but will remember to be on the look-out for suspicious changes anyway, just in case. I am thinking of you and good luck.