2 Time Ovarian Cancer Survivor & Prophylactic Double Mastectomy with Breast Reconstruction, BRCA Warrior

“I have what?” That was the question I asked out loud after hearing that I had Ovarian Cancer over the phone in 2021, in the middle of the pandemic, after an ‘emergency’ surgery to remove a bursting fallopian tube and attached ovary. 

Little did I understand that this was the start of my journey. After my 1st Ovarian Cancer diagnosis and subsequent fullradical hysterectomy and staging, I underwent genetic testing that may indicate why I developed Ovarian Cancer. We discovered through this simple genetic blood test that I was BRCA1 Positive; positive meaning there is a mutation in my BRCA1 gene.

Everyone has BRCA genes, exactly half from each parent. The gene itself does not cause cancer; as a matter of fact, its job is to repair any broken BRCA DNA that can lead to cancers and uncontrolled tumor growth. (yes plural cancers). The name “BRCA” is an abbreviation for “BReast CAncer gene.” A small percentage of us, yes, both men and women, carry a mutated BRCA gene, about 1 in 400*. BRCA1 or BRCA2. A mutation means the BRCA gene may no longer be effective in repairing broken BRCA DNA, leading to different cancers. 

Primarily responsible for breast cancers, hence the name, for my case, I received my broken gene from my Father, who was a prostate cancer survivor, which is why I underwent the simple genetic blood test. BRCA positive genes are responsible for: Female Breast (60%) & Male (0.2%–1.2% – What? Males? Yes with a BRCA1 Positive), Ovarian Cancers (39%–58%) and less common, but just as deadly, Pancreatic (5%), Prostate (7%–26% of men), melanoma, stomach cancers & rare type of endometrial cancer called uterine serous carcinoma.*

I know that’s a lot of information to digest; however, a necessary explanation as to part of my journey. We relocated from California to North Carolina in 2022 for better health care, just in time. A 2nd recurrence of Ovarian Cancer hit. It was back and in my umbilical cord, abdomen wall & muscles in my stomach area, in early 2023. This is how I met Teal Diva. I signed up for my first 5k post-cancer and the day I went to pick up my packet, I found out I had a recurrence while in line. I was blessed to have people surrounding me at the very EXACT moment. Literally picked up my 5k packet and said I have ovarian cancer again and talk about a big hug and being there for me throughout my Ovarian Cancer walk, AGAIN! EXTREMELY fortunate to have Teal Divas support for me to help me through, something I had never fully experienced until then. 

But wait, there’s more. Being BRCA1 positive, I also underwent MRIs and Mammograms, rotating every 6 months, in addition to the Ovarian Cancer CT every 6 months. We found a tumor that may or may not have been cancer, but not able to be fully determined without a biopsy. After completing loads of research on biopsies for my particular cancer, I did NOT want to complete a biopsy as if the tumor was positive for cancer, which would be triple negative breast cancer for BRCA1 patients like myself. I know that the likelihood of it spreading would be high. 

I was faced with a choice. Wait and see and keep monitoring the tumor until it was very clear through the tests that it wascancer, or complete a prophylactic (meaning before a cancer diagnosis) double mastectomy with reconstruction and never have to complete a Breast MRI or Mammogram again. After much thought and discussion with doctors, friends and others that were in this odd situation of having Ovarian cancer first, rather than Breast, I opted for a prophylactic double mastectomy & immediate reconstruction under my breast muscle as I was not a candidate for over the breast muscle since I have a large frame and had naturally larger breasts. I thought it would be a simple procedure, for me it was not. It was a 10-hour surgery, and the healing time was much more intense than what we thought. The tumor was negative for cancer, THANK GOODNESS! 

That news reinforced the decision that we made, my husband and I, that the prophylactic way was the way to go, as scary and hard as it was to come to the decision. I also found out that my basic anatomy was different on both sides of my body. My left and right bones for my chest wall sit differently, as well as my muscles, discovered during surgery. Slightly. Notsomething that can be tested for before surgery. Hence having problems with my right reconstructed side, but fantastic doctors to walk me through each step, including my right-side implant that flipped over post, my permanent implant placement. However, my doctor, in the office, was able to reflip it back over without surgery (strange I know). I am still healing 8 months in, and next will be nipple reconstruction & aesthetic correction of here and there, probably in 2026. 

I encourage people to request genetic testing through their doctor or independently if there are any of the cancers mentioned above in their family history from either the mother’s or father’s side. As I did not know, until after the fact, where my cancer came from. I had always heard that female cancers could only come from the mother. This is misinformation that must be shared, as well as overcoming the fear of even getting tested. Getting tested does not mean you need to take action by any means. It is information for you to have, should any question arise in your health care journey, preparing you and already being armed with the information to make the best care decision for yourself in the future. It deflates the worry and the what ifs that come along the way, at least for me, it did. If I had known sooner, meaning before 2021, I probably would have completed a prophylactic hysterectomy, hence avoiding Ovarian Cancer all the way around. 

Be Well, Ellyn Fulton, Survivor and Thriver! 

* https://www.cancer.gov/about-cancer/causes-prevention/genetics/brca-fact-sheet