I also posted this in the High Risk forum and received some helpful input. The Moderators suggested I post in this forum, too. I really appreciate hearing from others about their experiences and insights!
As part of my breast cancer follow up, my oncologist had me do genetic testing. I don't have BRCA mutations, but I tested positive for MSH6 mutation, which is one of the genes associated with Lynch syndrome and increased risk of colon, uterine, ovarian cancers among others. I am having a hysterectomy and oophorectomy in the spring, but recently came across a 2018 study that associates this mutation with a 31% increased risk for breast cancer. The study was the first to look at each of the Lynch genes individually for their association with breast cancer, but it was a small study with some limitations and therefore the body of evidence is suggestive but not strong at this point.
I have consulted with my surgeon and a plastic surgeon about prophylactic bilateral mastectomy for risk reduction. Both advised it's my decision, although they also both agreed the partial mastectomy I had for the IDC and current adjuvant treatment plan are appropriate course of action.
When I was initially diagnosed with stage I DCIS that turned out to be stage IIIa IDC, I chose partial mastectomy because I could not bear the idea of numbness in my breast! I also have a close relative that had a lot of scarring, pain and multiple surgeries following her mastectomy and reconstruction. However, I am really concerned about the increased risk associated with MSH6. I haven't discussed with my oncologist yet, but plan to when I see her next week.
I am really interested in knowing what others who have had bilateral mastectomy feel about their decision, what was important to them in their choice, and what their thoughts are on the numbness. Is it distractingly uncomfortable, get in the way of daily activities, constant? I know living is the most important thing, but the numbness has been the major issue for me as I am thinking about this decision. I was told it feels like scratching your leg when it's fallen asleep. Thanks in advance for any and all input!
8/5/2019, IDC, Left, 5cm, Stage IIIA, Grade 3, 4/10 nodes, ER+/PR-, HER2+ (FISH)
9/13/2019 Lumpectomy: Left; Lymph node removal: Sentinel, Underarm/Axillary
10/10/2019 Carboplatin (Paraplatin), Taxotere (docetaxel)
10/10/2019 Perjeta (pertuzumab)
10/10/2019 Herceptin (trastuzumab)
Log in to post a reply