Community Member Spotlight: Jess

AdvancedOvarianCancer.net is dedicated to highlighting the stories and experiences of community members living with ovarian cancer. Jess's ovarian cancer story began in January 2021 after fertility complications and a routine ovarian cyst removal procedure. She was left shocked to learn that she had stage 3c ovarian cancer.

Since her diagnosis, Jess has been motivated to "story tell her way through ovarian cancer" in order to encourage and support others.

This is Jess's story...

From a shocking diagnosis to difficult treatment decisions

I was diagnosed with Stage 3C Low-Grade Serous Ovarian Cancer in January of 2021. My husband and I were trying to get pregnant for a year and after 3 unsuccessful IUIs, my fertility doctor recommended that I have a routine ovarian cyst removal to rule out any other factors in my infertility. My first surgery removed the cyst but the pathology report showed that the cyst was actually a borderline malignant tumor. I was referred to a gynecological oncologist who performed the second surgery which was to remove my ovary and fallopian tube.

At that point, there was still hope that I could do an egg retrieval and have a child. However, the result of that surgery was that she found cancer cells beyond the ovary and fallopian tube, and ultimately I had to make the decision to have a radical hysterectomy in February 2021. All of this occurred within one month of the initial diagnosis so there was not a lot of time to process the loss of having a child and the fear of finding such a late-stage cancer.

After surgery, I was able to get into a clinical trial at Memorial Sloan Kettering in New York and completed 6 rounds of chemotherapy, ultimately entering remission in June 2021. I reached 6 months in remission in December 2021 and am still going strong.

To date, I underwent a radical hysterectomy removing all of my reproductive organs, part of my colon, liver, and appendix. Following that, I did 6 rounds of chemotherapy with carbo/taxol. I'm currently taking Letrozole, an aromatase inhibitor that works by decreasing the amount of estrogen produced by my body, which cancer can feed off of.

The power of connection and support

Connecting with other survivors over social media has made a huge impact on my outlook. I've found Facebook groups dedicated to low-grade serous ovarian cancer patients specifically to be the most informative and relatable. I am also a member of a young hysterectomy group that has been sometimes even more helpful than my doctor! These people really understand what you're experiencing and swapping stories throughout recovery and treatment was really helpful for me. Podcasts are a great way to hear about other women's stories. One in particular, Sips with Survivors, which I was lucky enough to be featured on and continue to listen to regularly, does a great job of featuring a diverse group of survivors and thrivers with cancer.

Personal advice to those newly diagnosed...

Trust your gut! If something feels off, push your doctor to run as many tests as you need to in order to feel OK. Get multiple opinions and keep track of symptoms that are unusual. Ovarian cancer often has no symptoms in the early stages. Later stages are associated with symptoms, but they can be non-specific, such as loss of appetite, bloating, weight gain or weight loss, and frequent urination. I honestly had no symptoms, so it's important to stay on top of your regular doctor's visits and blood work in case any issue is identified there.

The last thing I'll say is that it's so important for your body and mind to just keep moving! Some days it can feel impossible, but regular movement can make a big difference in your ability to endure the toughest physical hurdles as well as the hardest mental health challenges.

Being an advocate is about education, connection, and impact

I raise money for organizations that are dedicated to raising awareness and funding for cancer, especially rare cancers like ovarian. I've raised over $3,000 for T.E.A.L. (Tell Every Amazing Lady about Ovarian Cancer) through a virtual walk/run around National Ovarian Cancer Awareness Month (September). In May, I'll be participating in my first Cycle for Survival on behalf of Memorial Sloan Kettering and my team has raised $5k for rare cancer research. Outside of occasional fundraising, I've spoken on podcasts and use my Instagram platform as an uplifting and informative resource for survivors and their supporters.

To me, being an advocate means that you make an effort to educate, connect, and make an impact on a cause that you care about. I try to do that through fundraising, storytelling and being open to hearing from others how they are working through cancer.

Storytelling my way through ovarian cancer

I've learned that I am not alone in my fear or grief and that others are out there, just waiting to connect about the shared experience of surviving cancer. Putting my story in a public forum helps others to see that cancer can happen to anyone at any time.

From the outside, I was the picture of good health - fit, active, ate healthily, no history of cancer or illness myself, but on the inside, I had a serious and silent battle going on. It's important for everyone to see that cancer is not biased and that through hearing other people's stories, we can get better about staying on top of our health and being aware of critical signs and symptoms.

The cancer community is absolutely incredible. I have the deepest gratitude for the outpouring of love, support, and encouragement from the cancer community and I would encourage anyone battling to just explore. Start by following along in a group or in the comments section of a post. If you feel comfortable, share your own experience or ask a question. Every contribution to the conversation is meaningful and welcome.

Other Teal Warriors making a difference

These amazing people or groups have made my experience living with and fighting cancer to be just a little bit easier.

Organizations/Groups:@TealWalk, @Staaroc, @OCRAHope, @MemorialSloanKettering, @SipswithSurvivors, @therapeuticyogawithbreanna, @BRCAStrong, @DanceBody, @FredsTeamMSKCC

People:@VictoriouslyHopeful, @KickOvarianCancer, @LexiMestas, @AmyDeepharMD, @NoOvariesandaStoma, @DamnGoodYoga, @TheUnwelcomeJourney, @ShayleeBedward, @FXCKCancer, @JeanaTurner