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Aug 18, 2021 07:30AM
Hello- I was diagnosed with bilateral cancer in 2012, and my breast surgeon always believed my cancer was genetic becuase of the bilateral and my sister also having been diagnosed the same year. It began with a BRACA genetics test the year I was diagnosed, but my BS had me do every iteration of it that followed through the following years. se additional tests related to that. At no time was I ever offered to have a genetics counselor, but fortunately, none of the iterations of testing turned out to be positive.
Although no one on either side of our family was ever diagnosed with BC, both my sister and myself were both diagnosed with BC (different types though) within months of each other. She waited to see if any of my tests came out positive per the direction of her MO. But then more of a family history began to evolve; a first cousin had a daughter who was diagnosed in her early 30s with BC during a pregnancy (and prior to our family having been diagnosed), then her other daughter ended up being diagnosed a few years ago with bc in her late 30s. I started seeing what was an increasing story of breast cancer in our family story and talked this during a visit with my MO with my last genetics results.
I discussed with my MO an increasting family history about BC in the family that seemed to be stemming from my father's side of the family. Because I am not in touch with these cousins on a regular basis and none of them know about my BC or my sisters dx, I asked him if we needed to share our BC story with them? That maybe they too should be aware of the family history and possible need to get genetics tests? My MO advised that he did not think there was a connection with the cousin's daughters, but the fact they were both in their 30s during diagnosis, they should both be tested as the younger you are, the more likely you may have a genetic connection. In the end, neither my sister or I shared anything with them because of the conversation I had with my MO, but did hear the younger sister got tested and found out she had a genetic mutation for BC. Unfortunately, her older sister passed a few years ago. The genetics testing and evolving family BC history opened a pandoras box for us we had to navigate.
The biggest challenge on my end with this was the insurance part. There were pre-auths done by the BS' office, but several times they were rejected and I was expected to appeal them. One time, their office did not end up getting the right pre-auths and I ended up having a $7000 bill send to me to pay (which I did not).
If you are getting offered genetics testing, be sure you a) understand why they feel it is necessary, what factors make it necessary b) what the process is in advance to get your tests approved by insurance c) and ask for a genetics counselor in case your results end up with information as some genes are tied to other types of cancer and you need to know what to be prepared to do extra if you tests are positive and what if anything you need to be prepared to discuss with family.
I am now in a new FT job and in a different delivery system and waiting for a consult with their cancer center to see what I need to be doing at this point to be followed with being a number of years out from my diagnosis. I plan to discuss the genetics testing history with them as part of that consult.
9/14/2012, DCIS, 1cm, Stage 0, Grade 1, 0/1 nodes, ER+/PR+, HER2-
9/14/2012, IDC, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2-
11/14/2012 Lymph node removal: Right, Sentinel
11/14/2012 Lymph node removal: Left, Sentinel
11/14/2012 Lumpectomy: Left, Right
3/20/2013 Arimidex (anastrozole), Aromasin (exemestane)