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Aug 6, 2017 04:31PM
Aug 6, 2017 04:40PM
DC - I am so glad to read your post because I, too, am PALB2+ with NO cancer, but I am really considering preventative bilateral mastectomy. Currently, in 2017, it is the most aggressive recommendation for someone like me with my family history and oldest sister being diagnosed with BRCA at age 39.
So far in my genealogical investigating, I have discovered there has been cancer in 5 generations of my family. My oldest sister was diagnosed in Feb 2017 with Stage 3, Phase 3 BRCA, nearly triple negative. A first cousin, a second cousin, and two great aunts have all had breast cancer. An uncle had a 13 month battle with lung cancer at 52 years old, and although he smoked, I'd bet that he had this same mutation which just put him at an even higher risk. My great x2 uncle and all three of his sons had some kind of cancer (prostate, colon, leukemia). My great x3 uncle died of prostate cancer in the 1920s. I'm still on the hunt for more death certificates of my ancestors in that line of the family. Kind of a fascinating investigation to keep my mind off what I could really be facing.
I am only 34, yet I have many of the exact same sentiments as DC:
"I am aggressively pursuing a preventive BMX because I simply don't care to wait around for this to maybe drop into my life later on. I just got married in August and waited a long time to get family started. I'm ok to wait a bit longer if it means some serious prevention right now. I'm the next oldest (37) after my cousins. My genetic counselor told me that I'm unlikely to find a BS to recommend the surgery because its not on the official guidance docs, but I have researched this so much over the last few months that a 58% lifetime chance plus my family history is simply too much anxiety for me to personally handle. I'm a worrier/hyper-planner and I think my husband would suffer as much as I would if I needed a lifetime of high surveillance and biopsies. I've had experience with major surgeries (wrist fusion, tendon ruptures in my hand, etc) and know all too well the risks associated with going under the knife. But this is something I have peace that surpasses all understanding and willing to take on the insurance companies if I can find a BS to support me in this. I know there aren't too many "PALB2+ but no cancer diagnosed" yet around (I've looked .....) but hope to hear more on the boards as the test is more widely available. It might not be an actual BRCA diagnosis, but the little research that is out there is showing that is could reach similar, at least BRCA2, levels of penetrance."
I think there are several females in my family who are wanting to be tested for just PALB2. At Invitae out of San Francisco, the cost is $200. However, if someone had a full-panel test through Invitae and tested positive for a mutation, immediate family members can be tested for free for just that mutation IF it is done within 90 days of the initial full-panel test. Of course they just passed this rule last week...So, my other sister will not have to pay for her test, but my cousins will.
Nevertheless, I am very anxious for the results of my two cousins who have had BRCA and also for my sister's and cousins' results, as well. Hopefully my other sister won't have the mutation, but time will tell...the two week wait time can't pass soon enough.
So the question remains, am I crazy to consider a preventive mastectomy at 34? I certainly don't want to be thrown into menopause by taking Tamoxifen, I don't want the worry of a lifetime waiting game, and I certainly don't want to put my body, mind, and family through cancer when my pain and emotional tolerance is close to none. Also, given the current state of healthcare, education, and politics in our nation and Iowa (where I live and teach), the practical side of me says the time to do this, financially, is soon while I have a good job and insurance.
But, the bottom line is that going thru an irreversible, major surgery must feel right to me. I just have so many conflicting thoughts and emotions going thru me about it all. I am getting a second opinion to assess my risk -- higher than 58% says the doctor of both me and my sister. And of course, my sister says that she would have had a preventative mastectomy had she known her risk.
Thoughts and opinions, please. Sorry for the long post.