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Sep 29, 2021 06:43PM
Ten years ago, I was dxd with multifocal IDC, with DCIS. I was 60 years old. My mom had also been dxd with BC at the age of 60, but so long ago that there were no tests to determine the characteristics of her tumor. Other than my mom, and a great-aunt who died from colon cancer, there are few other relatives with cancer in the family.
At that time, I chose BMX with implant reconstruction, as my native breasts were extremely dense, heavy, and fibrocystic. Because of the size and location of the lesions, as well as having the maximum surgery, I didn't need radiation or chemo. I managed to last 18 months on Arimidex first, then Femara, before the severe side effects caused me to stop.
At that time, I wasn't offered genetic testing.
On September 15th of this year, I would have been a ten-year survivor. However, in early spring, I found two tiny lumps under the skin, below my suture line and above my implant on the left side. Because it was right in the middle of the post-holiday pandemic surge, we chose to wait and watch. I underwent a simple biopsy, and then later, a wide excisional biopsy. Both revealed multifocal papillary carcinoma with microinvasion, plus areas of DCIS.
Kaiser has implemented a Breast Cancer Tumor Board since my first dx. My case was thoroughly discussed after each pathology report, and opinions were divided on how to proceed. What they did agree on was a referral to Genetics.
(At issue is radiation and the potential risks to not only my implants, but also my skin – which is compromised by Ehlers-Danlos Syndrome. EDS is a genetic disorder of all the collagen and connective tissue in the body.)
Yesterday I met with the Genetics Counselor – the same one I met with in 2018 when I was dxd with EDS. She explained that back in 2011, genetic testing for breast cancer was quite limited, mostly to BRCA1 and BRCA2, and by definition (older age at dx, no biological children, post-hysterectomy) I wouldn't have been a candidate for BRCA testing. Now, though, they can test for many different types of cancer, not just breast.
Yesterday I had bloodwork drawn for Invitae. It will take 2 – 3 weeks for the results. She requested a comprehensive panel that will look at 60 genes. Should I test positive for any of them, I will then be seen in the High Risk Clinic for treatment. She also said that I might see "Unclear Genetic Variation" listed in the results. This means that there's something wonky, but they don't yet have a clear explanation. In that case, she said it would just be a matter of time before the technology caught up, and eventually I'd get clarification.
These tests will cost me nothing. Seeing the Genetic Counselor in clinic will cost me $10. The fact that I now have "recurrent invasive cancer" was enough to generate a referral to Genetics.
SO – long answer to say that it wasn't my decision to request genetic testing (although I heartily agreed!) and I faced absolutely no barriers in getting it.
9/15/2011, IDC, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2-
12/5/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
8/21/2012 Reconstruction (left): Saline implant; Reconstruction (right): Saline implant
9/5/2012 Arimidex (anastrozole)
10/22/2013 Femara (letrozole)
7/15/2021, IDC: Papillary, Left, <1cm, Stage IA, ER+/PR+, HER2-