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3 time cancer survivor. Breast Cancer at 31; Thyroid Cancer at 36 and Breast Cancer again at 46. BRCA1
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I was diagnosed with Breast Cancer in 2000 at age 31. It seemed to come from nowhere. I was young, healthy, and there was no known cancer on my mom's side of the family, But when my older sister was diagnosed with breast cancer a month later, my oncologist recommended we look into genetic testing which was pretty new at the time. Both my sister and I tested positive for the BRCA1 gene mutation which was carried on my dad's side of the family. His only sister died in her 40s of metastasized ovarian cancer. So one thing we learned early on was this is not just a "female" side of the family issue. I originally had a lumpectomy and chemo and then decided to go back for a double mastectomy with reconstruction. As part of the genetic counseling, I was advised to have a my ovaries removed or a full hysterectomy by the age of 35. We were fortunate to have our first child in 2002 - a beautiful baby girl. During pregnancy, lymphedema on my surgery side arm, kicked in and has been a nuisance ever since. With the age 35 timeline looming, we tried to have a second child and again were blessed with another baby girl. Shortly after, during a regular physical, my primary care doctor found a nodule on my neck which turned out to be Thyroid cancer. We were told there was "no linkage" to BRCA1 cancer but seemed hard to believe. I had a full thyroidectomy and treatment with radioactive iodine. Seven months later, I had a full hysterectomy. Years passed and everything seemed to be behind us. Having had a double mastectomy, I wasn't receiving mammograms, just checks at my yearly ob gyn appointment. 15 years after my first diagnosis, I found another lump, this time on the other side. I was diagnosed with stage one breast cancer again, categorized as a "new primary cancer", not metastasized. After a lot of research into new treatments and alternative therapies, I decided to do surgery, chemo and radiation and have been cancer free for about a year.
The multiple occurrences of cancer have been really hard. For the first diagnosis I was in shock - just couldn't believe it was happening. The second - outright anger. The third - fear. I also believe that all of these surgeries and treatments have forever altered my body. I developed food allergies and have to be on a very clean diet. It's ok now but was very hard in the beginning. I started getting really bad migraine headaches as well. The radiation also did a number on my skin and the lymphedema is a constant annoyance. Having a hysterectomy at 36 has created its own set of issues to deal with and my bones have weakened from having low estrogen levels and such an early age. The pileup of everyday issues had been hard to take on top of three years of fighting cancer. I also have two daughter so its hard not to think about what might be in store for them. They were too young the second time around but were very aware of what was happening during this last bout.
I'm not sure I would have done radiation this last time. I had a lot of reservations about it bc of its long lasting effects on the skin and also the fact that radiation causes cancer!
I just joined but I can see FORCE helping me identify the best way to approach this for my two daughters.