Dear SuzyQ92,
Your bio on the bottom of your post went straight to my heart/soul. I pray that someday the world will look vastly different for a BRCA+ woman with breast cancer but the situation today is that the gold standard of care for you is unfortunately a BMX and oophorectomy down the road. Some day, things will hopefully be different; for now, it is what it is.
I am writing to you to offer you some encouragement. It may not seem that way when you first read this but please stay with it. Some personal background-when I was two years old my maternal grandmother, at the age of 46, was diagnosed with Stage IV ovarian cancer and she died 4 months later. The BRCA mutation was unknown at that point. I was 2 years old at the time (1946) and all I have is one picture of her holding me when I was about a year old and her love for me was palpable but unfortunately, I don't remember her. She was 19 years old when she gave birth to my adored Mother, who was diagnosed in 1959 with breast cancer when my Mom was 41. Still no knowledge of the BRCA mutation and chemo was in its infancy so my Mother had a mastectomy and radiation therapy with no chemo. She developed metastatic disease about 3 years into her awful journey and died in 1964 when she was 46 and I was 20. She was a single Mom and she was my best friend. At the end of her five year battle I was so beat up emotionally that I think I was 30 or 35. I was her patient advocate and caregiver. And throughout her journey she worked full-time and managed to keep guiding/loving me no matter what discomfort she was in. Some 40 years later, in 2004, my daughter, at age 36, was diagnosed with TNBC. Her tumor size was 1.6 cm and she also had no lymph node involvement.
She was not advised to test for the BRCA mutation despite her profound family history of breast and ovarian cancer on my side of the family. She was advised to have a lumpectomy and then do chemo. Turns out her breast surgical oncologist was a
'conservationist' and did not recommend to any of her patients that they do genetic testing because she did not believe in BMX. So she had surgery and then 4 months of ACT.
During her chemotherapy I found out about the BRCA mutation and my daughter tested positive as did I. After her chemo, and once she understood what the BRCA mutation entailed, she decided at age 37 to have BMX and also had gynecologic surgery because the genetics expert told us that "we are seeing a lot of ovarian cancer in women in their late 30's."
Suzy, I am not sure what saved her life but here we are 18 years later and she is cancer-free and healthy.
So, I know some may read the above as a very sad story and it is, BUT we now have a lot more knowledge about the BRCA mutation than we did when my Mom was diagnosed and a lot better treatment.
Suzy, hopefully, you will be able to live a long life and be cancer-free.I did the following short video of Genetic Alliance and I am posting it with their permission. I believe it was done about 10 years ago. Genetic testing ten years ago was not nearly as popular/well known as it is now and I wanted to get the word out that men could carry the BRCA mutation and Genetic Alliance actually used the video I participated in to train physicians. We also now have the knowledge that there are other mutations that can be deleterious and cause breast cancer.
https://www.youtube.com/watch?v=CQrQMY2w05kI became a patient advocate when my daughter was diagnosed with TNBC. I have helped many hundreds of women on this site over the last 11 years, some with the BRCA mutation but many, more, without it. Approximately 70% of women with the BRCA mutation have TNBC when they have breast cancer but the converse is not true. 70% of women with TNBC do not carry the BRCA mutation.
Suzy, if you would ever like to talk with me, I would like to do that. Maybe I could be a resource for you, somehow, someway, although I will never give you medical advice as I am not a medical professional. But I may be helpful, if you ever want a second opinion from a Breast Medical Oncologist who is knowledgeable about TNBC or would just like to talk.
You can send me a PM and I will send you my phone number or you can email me at
steve@sagepatientadvocates.org
Everything we talk about will remain confidential and there are no charges.
I wish you the best of luck in your journey and I think you gave pawwjw excellent advice about her 'following' her heart. And of course I wish you, pawwjw, the best of luck, too, as I do for everyone here.
with my love to all here,
Steve
Edited by SagePatientAdvocates - Nov 10 2020 at 11:29pm