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Sep 13, 2018 10:32PM
Sep 13, 2018 10:47PM
I have decided to do a bmx. I don't like cutting off healthy tissues but I feel that "bad idea" feeling when I consider keeping it. My paternal grandmother had breast cancer at the same age as me and did not have a recurrance but developed an " entirely different" breast cancer a few years later in her remaining breast. My second cousin on that side also has breast cancer. I do not know if she had it in both breasts but my great aunt on the other side did and possibly my great grandmother, also in her 30s or 40s. I apparently have "very dense" breasts and my cancer was misdiagnosed as benign the first time I had it imaged after finding a lump. So my breasts may just be prone to cancer in general even though I tested negative for mutations on a little over 30 genes tested. Additionally, despite my own vigilance, my cancer was originally missed/misdiagnosed after the first round of imaging.
The breast cancer concordance rate among identical twins is low, interestingly, even when there is thought to be a genetic componant (other than BRCA1/2 mutations) but this isn't surprising because we see a lot of variation between twins in genetic tumor causing conditions, for example neurofibromatosis. In neurofibromatosis type 1, one copy of the bad gene is inherited, and for symptoms to manifest, the person must have the second " good" copy of the gene in some cells acquire a bad mutation. Additionally, epigenetics, the phenomena of genes being on or off, probably plays a part. When twins are born, they have most, but not all of the same genes on and off. The older they get, the greater the difference in their epigenome becomes due to natural variation, lack of a synchronicity, and different environmental factors, most probably minute. The functioning of the genome becomes quite heterogenous and even when a tumor associated genetic factor is present, it can be either directly or indirectly modulated by other genes and environmental factors which, even in conditions like neurofibromatosis, when both twins have the disorder, they do not necessarily have the same tumors in the same exact places.
I don't want to cut off my good breast but I know six things.
1. My body facilitates breast cancer.
2. I have a family history of breast cancer in both breasts, at least one was not a recurrance but a second cancer.
3. I have dense breasts, making breast cancer more likely to develop and more difficult to find/spot.
4. Too many radiologists aren't as good as they should be (I conclude this not just from my own misdiagnosis but other instances of radiologists missing very obvious things with other family members...brain tumors, liver lesions, etc.
5. My cancer was missed due to 3 and 4 despite me finding a palpable lump and being concerned enough to have it checked. It almost killed me, might still kill me, and another miss in the future can kill me. So can surgery but now I have to have that anyway.
6. I controlled for most of the environmental factors that I could to prevent breast cancer. My grandmother and I have vastly different lifestyles and had vastly different pre cancer diets. I excersized regularly, ate no red meat and very little poultry...I was a vegeterian from the age of 10 to 20. I ate a ton of cruciferous vegetables...at least from 20 onward, some turmeric even though I don't like it, a fair amount of anti oxidants. I ate a low glycemic diet and was actually was close to dairy free for a number of years in my early 20s. I got cancer anyway. What else could I have done that I could reasonably have known to do?
Now I have the option of removing the "good" breast and doing so is the only other thing I can do to take an active role in preventing cancer in it. True tamoxifen might reduce my chances of developing cancer in that breast but by how much really? And I may not be able to safely take that without a hysterectomy.
If I had reason to believe my breast cancer was an entirely random fluke, had no compelling family history, and I had fatty breasts rather than dense breasts, I would keep the other breast.
2018, IDC, Left, 3cm, Grade 3, ER+/PR+, HER2+ (FISH)
5/31/2018 Carboplatin (Paraplatin), Taxotere (docetaxel)
11/14/2018 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement