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Jan 4, 2018 Latest post:
Sep 13, 2018
Welcome to my Caring Bridge Site! I wish I was blogging about exotic plants or the antics of my dogs or something, but unfortunately this is all about cancer! At 33, I was diagnosed with stage 2 breast cancer. Specifically, I have invasive ductal carcinoma. It’s grade 3 which is the fastest growing, most aggressive of the 3 grades of breast cancer. This is common in younger women who are diagnosed. It was stage 2 because the tumor was larger than 2cm. A year after completing 4 months of chemo and having a single mastectomy, a CT scan showed the cancer has spread and is now stage 4.
Every breast cancer is tested for receptors to see if it is estrogen receptor positive, progesterone receptor positive, or hormone epidermal growth factor (HER2) receptor positive. These receptors cause breast cancers to grow faster, but can also be targeted by many medications. My cancer is triple negative (negative for all 3 receptors). Triple negative breast cancer is also somewhat more common in younger women and can be more aggressive than hormone receptor positive breast cancers. When I say aggressive, I basically mean the cancer grows and spread faster, which makes it difficult to eradicate every cancer cell before it spreads somewhere new.
I have no family history of breast cancer, but the statistic is that somewhere around 85% of women diagnosed have no family history. In my case, it turns out I have the BRCA2 gene mutation. Each gene carries instructions for making proteins. Proteins are responsible for many of the biological processes in our bodies including DNA repair. Everyone carries the BRCA1 and BRCA2 genes and for most of you, these genes help PREVENT cancer by repairing damaged DNA. In people who carry a mutated BRCA gene, there’s a greater likelihood that something will go wrong during the DNA repair process and this can lead to cancer. I was told by a genetic counselor that people with a BRCA2 mutation have about a 45% chance of developing breast cancer in their lifetime, although a study published this year showed a lifetime risk of 69%. The gene mutation also comes with about a 15-17% chance of developing ovarian cancer. BRCA1 mutation carriers have even higher risks of these two cancers.
If any of you have a family history of either cancer I would strongly urge you to get tested for the gene mutation. With a family history, insurance should cover the test at no charge to you, and it will give you and your family more information about your health risks. It’s recommended that women with the mutations begin mammograms and breast MRI screening much earlier in life, as well as screening of the ovaries and removal of the ovaries after age 40. Those things suck, I know. It’s hard making the decision to do something that can reduce your quality of life, but I can tell you from personal experience that nothing destroys your quality of life like a cancer diagnosis. Breast cancer is honestly not that big of a deal if caught early. Not that it isn’t terrifying for those who go through it, but Stage 0 and Stage 1 have about a 99% cure rate and can often be solved with a lumpectomy and localized radiation. And that’s my guilt trip/parental lecture! Don’t worry, I won’t bug any of you about this in person. I’ve given you the information, you decide how to live your life!....Although if I die from this and then YOU have the BRCA mutation and die from this my ghost might be waiting for you in the afterlife tapping its foot going “If SOMEBODY had just spit in a tube, we wouldn’t be meeting like this!” But then I’ll forgive you and invite you to come haunt people with me.
I’ve had a bunch of people ask me “How did they miss this?” At diagnosis, I had multiple scans done and there was no evidence that the cancer had spread anywhere outside the breast. I also had a biopsy of the lymph nodes associated with the affected breast and that was negative for cancer as well. So how can I suddenly be stage 4? Stage 4 means that the cancer is growing somewhere other than where it originated (the breast). A recurrence can be localized (it comes back in the breast), or distant (anywhere else). I had a mastectomy, so localized recurrence was pretty much impossible. My recurrence was distant because it showed up in my liver and lungs. What probably happened is that the cancer had already spread when I began treatment last year, and the chemo didn’t get it all. As a result, the remaining cancer grew unchecked since chemo ended.
If the cancer had already spread last year, how come it wasn’t detected? With current technology, only tumors larger than ½ cm show up on MRIs and CT scans. I likely had microscopic particles of cancer that spread outside the breast at the time I began treatment, but they were invisible on my scans. The whole purpose of chemo last year was “just in case” these tiny rogue pieces of cancer existed. There was no way for anyone to test if these microscopic particles existed or whether the chemo had destroyed them all. We did chemo and hoped for the best. Doctors have to weigh the risks of chemo vs the risk of not killing every cancer cell and the research shows that 4 months of the drugs I received give patients the best chances. My chemo recommendations were made Dana Farber which is one of the largest cancer centers in the U.S. and is on the cutting edge of research, so I feel I got the correct course of treatment. For many people, it would have been enough, I just got unlucky.
The screening plan had been for me to have a mammogram 6 months after treatment, and a breast MRI (which also shows the liver) 6 months after that. Before you get angry about my doctors not ordering more scans sooner, they honestly thought I had only around a 5% chance of recurrence and because the scans can’t see the small stuff, they probably saw early scans as pointless and an unnecessary cost. Having an MRI or CT scan in June probably would have caught this, but it still would have been stage 4 because anything outside the breast is stage 4 and it still would have been considered incurable. I also would have had to go right back into treatment without giving my body a chance to recover from last year’s chemo and surgery. While chemo 8 months ago would have been fighting a smaller amount of cancer, it also would have been weakening my barely recovered body. My body is much stronger than it was March of last year and I’m sure that is a big part of why I’m tolerating treatment so well this year.
I spend a lot of time learning about my cancer and I enjoy educating other people about it, so if anyone reading this has questions, worries about their own risks, or would like me to reach out to someone they know with cancer, you are welcome to contact me through Facebook or by email. My email is firstname.lastname@example.org.