Archives for May 2025

Today we are honored to share one more story involving a gene mutation and a gyn cancer diagnosis. Thank you to Monica, and all the women who shared with us this month and making us more aware of gene mutation and the impact it can have on your life and cancer journey.

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How did you find out you were BRCA positive?
I had the genetic testing completed in 2016

What Does a BRCA-Positive Diagnosis Mean?
To me, it meant that I had a higher risk of developing breast cancer. However, it could mean that someone who has breast cancer and is BRCA+ could develop ovarian cancer too.

Did you feel supported by your healthcare team after your diagnosis?
I felt very supported. My doctor recommended a double mastectomy because I had an 88% chance of developing breast cancer. I had the surgery 1 year after my diagnosis.

How has being diagnosed and being BRCA positive changed your diagnosis and care plan?
It didn’t change things very much for me. Because of my amazing medical team, they acted quickly and we took all necessary steps to prevent any future complications.

How has being diagnosed and being BRCA-positive changed your outlook on life?
It forced me to lean on my family for more support, encouraged me to be more healthy, and not be afraid to tell my story. If I can help one person by speaking up or being a soundboard for others, then I feel like I made a positive difference in the world.

What is some advice I’d give to someone newly diagnosed as BRCA-positive?
There’s so much that I could say, but I’ll try to sum it up. First, take a deep breath. You’re not alone. I know that it feels overwhelming, but so many others have walked this road before us. Find support within organizations, such as Teal Diva. Second, knowledge is power! Knowing about your specific mutation and what it means for your cancer risk will be very important. Also, trust your medical team. They should have your best interest at heart and a second opinion never hurts! Lastly, take care of your mental health, talk to your family, and be kind to yourself. All of this will be new and uncharted territory. Give yourself grace as you navigate through this new chapter.

What has testing positive for the BRCA mutation taught me about my body and my strength?
It has taught me that I’m stronger than I thought I was. I won’t say that the surgery recovery was easy, but once I was fully healed and came out on the other side I was impressed by myself. I never thought that I would be able to endure what my body had to go through. I thank God every day for his grace and mercy. I truly believe that I was able to have so much strength because he carried me the entire way.

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

Did you know May is Genetic Testing Awareness Month? Many times in the gynecologic cancer world, we hear about genetic testing and the impact our genes have on our health. Over the next few weeks, we are going to dive into some survivors’ stories that have genetic testing at the core of their diagnosis. The first thing we need to point out is that two types of testing can be done: genetic and genomic testing. They are similar but still different.

Genetic testing is “a test that looks for inherited gene mutations from a sample of your saliva, cells, or blood that could affect your cancer risk. Genomic testing is “one method your doctor can use to predict how your cancer will grow and which treatments might work best against it. It’s sometimes called “DNA sequencing.” The test looks at all your genes rather than a specific one.”

Today, we bring you a story from ovarian cancer survivor Dale, who had both genetic and genomic testing done as a part of her diagnosis and cancer journey.

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I had genetic testing done shortly after being diagnosed with ovarian cancer in June 2016. That showed that I was BRCA negative and gave my doctor other info for treatment plans. 

About a year into my diagnosis, I was asked by my doctor if I wanted genomic testing done. He explained that genomic testing would test my tumor. When he got the results, he told me I had the HER2 gene, and it was a good thing as it would qualify me for additional treatments. After a few failed treatments, I was given the choice of trying a clinical trial of Perjeta and Herceptin due to my HER2 diagnosis. This is a combo used frequently in breast cancer patients. I did fairly well on it, but it had a side effect of intense itching, so I decided to stop it. I’m not sure if it ever got approved for ovarian cancer. I had a few more treatments, then another HER2 trial was available, and at that point, I thought my time was up, as I had a pleural effusion, was having to use a walker, and my options were getting slim. So I said, “What do I have to lose?”. This trial was new and had never been tested on humans. It was called BB1 with Optivo. It was my fountain of youth. After one treatment of the BB1, the plural effusion was gone, everything got better, and I felt great. Unfortunately, after 9 months, I had a slight tumor progression, so I was disqualified from this treatment path. It was back to traditional chemo and more side effects. For a few more years, I had several chemo combos. Just as my options were dwindling, up popped another HER2 drug called Enhertu that was just approved by the FDA for treatment of other cancers, so my Dr. signed me up. That was December of 2023, and I’ve been on it every 4 weeks since, and so far my numbers are going down and my tumors are shrinking. The worst side effects is diarrhea and a lot of foods don’t taste good anymore, therefore I have a hard time eating. I have peripheral neuropathy in both my hands and feet from a previous treatment, so I’m trying different options to help with the pain. I continue to be positive, travel, and do all the things I love to do. 

My care team at Levine Cancer Institute is great, I have complete faith in them and Dr. Naumann. 

Organizations like Teal Diva provide retreats, meetups, chemo shirts, fundraisers, support, and the opportunity to connect with other survivors so we can help one another. They have been great and have had a huge impact with their support throughout my journey. I’ve received cards, gifts, flowers, love, and caring. They are a big part of my life.

Further reading and information in the blog can be found at:

https://www.webmd.com/cancer/what-is-genomic-testing