prophylactic mastectomy following positive palb2 mutation

Yes.  I actually went about it backwards. I was diagnosed with BC in Jul 2015.  I have strong family history of breast (including male BC), colon, and other cancers, so my genetics counselor suggested to a quick 5-gene panel which included the BRCA genes, and then doing a 32-gene panel that covers the more obscure genes, many of which cause breast, colon, and other cancers found in my family.  When the 5-gene panel came back negative, we proceeded with a lumpectomy. About 2 weeks later the larger panel revealed the PALB2 and Chek2 mutations, both of which cause BC. Unfortunately, by that time my pathology had changed from ER+PR+ to ER+PR-, a more aggressve cancer. As a result my treatment plan went from minor surgery (LX) plus radiation to LX, plus CHEMO and no radiation.

About 5 weeks after my final chemo, I had prophylactic bilateral mastectomy.  As my BS said, the LX took care of the tumor, so the BMX wasn't to treat cancer.  I think if I had waited just a little longer after chemo that I would have had an easier go of it. As it was I had a lot of complications and it took 16 weeks to heal. Perhaps the chemo impeded healing.   But the BMX itself wasn't difficult or terribly painful. I didn't have reconstruction, so I can't comment on that.  The drains were a pain in the butt and I felt a LOT better once they were out.

My only regret is that I didn't know about these gene mutations 4 years ago. I could have started an AI. I could have had preventative surgeries and maybe avoided BC and chemo.  My 23yo DD decided to get tested and she is also PALB2 and Chek2 positive. She was devastated, as was I. But like I told her, at least she will have the advantage of close breast surveillance, with the option of starting hormone suppression early and preventative surgeries around age 35.  I hope it's enough. There are 3 women in my family who had pre-menopausal BC, including one aunt who was only 24.

One bright spot for me is that knowing that I have these gene mutations, my doctors can be vigilant with things like colonoscopies, thyroid and pancreas evaluations, skin cancer surveillance, and others. 

I would have at least considered the option, although I probably would have been more likely to go on an AI.

Like Mustlovepoodles, I too wish I'd known about my mutations a few years earlier. However, since PALB2 mutations' association with breast cancer was under study but wasn't widely known until a month before I was diagnosed, I have to accept the current reality. Good luck with your surgery.

l am also palb-2 positive, Had a mastectomy on left breast, had breast cancer node negative, 2 tumors one 2.7 cm triple negative and one 1cm her2.Went to fox chase in Philadelphia to get recommendation to treatment, can the chemo activate more cancer?

I'm in a nearly identical situation to LMStheLMS. PALB2+ with no cancer myself; a family history of cancer, including my younger sister who was 38 at the time of her diagnosis. I'm getting my head around the prophylactic surgery, but very unsure about reconstruction -- if, and if so, what type.

All my best.

Thanks so much for the reply. You and your family have sure been through a lot. May I ask what your daughter is thinking/planning to help prevent breast cancer? Did your doctor feel as though the palb2 mutation was significant in planning your treatment. I have been researching and can’t find a whole lot of conclusive information. Thanks so much for your insight

in my situation I was tested for all of the main breast cancer genes as well as all of the ovarian cancer genes. Then because of my mom's family history she was also tested for those genes and came back negative for all of them. I think going forward my four sisters could just elect testing for the palb2 Gene. I think that testing just by itself is only a few hundred dollars and it's likely their insurance would pay for that. I believe that if there is a strong family history and the palb2 gene Insurance may be required to pay for prophylactic surgery but I'm not sure. The women I am in contact with who have had this done were able to get their insurance to pay for it.

The Mo Obgyn who performed my surgery mentioned he had performed prophylactic oophorectomy surgery on a few women who had not had breast cancer but had a strong family history of ovarian cancer or the palb2 gene.

I didn't have that conversation with my breast surgeon because I had a double mastectomy before I found out that I had tested positive for the palb2 gene.

My husband was done talking about it a long time ago as well. Its good you found us and got some support. Personally I think a prophylactic Mastectomy without Breast Cancer would be far easier to recover from. You could do a DIEP or whatever you want. With me they rushed me through and I barely got the drains out before I started Chemo. Also I couldn't travel to get it done or be extremely picky about who did the surgery because of the diagnosis. I am sure I would have recovered much easier and had a better experience without staring at a diagnosis. 58% is a heck high number. I will be on Tamoxifen for 10 years or some combination of that and Aromotase.

Most likely that would be enough time and if need be you could take personal time for the last two weeks of school (much better than the first two weeks from a classroom management perspective) to give you a bit of a cushion. Recovery is really based more on the reconstruction you choose and you could get a lot of feedback here to know what to do in that regard. Also you could do the mastectomy ow and then just recover and do reconstruction later. I suspect that is far easier to recover but very hard on your body image