Community Member Spotlight: Cissy

September is Ovarian Cancer Awareness Month. In recognition, AdvancedOvarianCancer.net is highlighting the stories and experiences of community members living with ovarian cancer. Cissy's story with ovarian cancer began in August 2019 after being misdiagnosed with a stomach bug and then a UTI.

Since her diagnosis, Cissy became empowered to share her story and advocate for the medical community to do more for ovarian cancer patients in treatment, prevention, and effective diagnosis. She wants others living with ovarian cancer to know that they are not alone.

Get to know Cissy and her story...

From misdiagnosis to high-grade ovarian cancer

I was diagnosed with high-grade serous ovarian cancer in August of 2019. I was 52 at the time. I had been to the ER at a local hospital in July and the radiologist missed the grapefruit-sized growth above my bladder. I was discharged as having a stomach bug even though I repeatedly said, "It feels like something is right here" (my lower left pelvis) which is where my tumor was. I'd been diagnosed twice, with a UTI as I went to urgent care a few times, and have since learned that 75% of us with ovarian cancer are misdiagnosed.

This is why I'm not a super fan of "symptom awareness" campaigns as women and people with ovaries already go to the doctor when we have symptoms and our symptoms are often minimized or misdiagnosed, or as is the case with me, there are medical errors which slow down when we are diagnosed.

Recalling my treatments to date

From traditional oncology, I've had chemo, first with Carbo/Taxol, and then was in a clinical trial (Athena) for 10 months getting PARP inhibitors (Rubraca) or placebo and immunotherapy or placebo. I've not been unblinded yet so I don't know what I had but we suspect I had a PARP inhibitor as my red counts tanked while on it and rose when off of it.

I recurred a little less than a year after frontline treatment ended, during maintenance treatment. I'm now on Carbo/Doxil chemo but it's palliative as I no longer can be cured. Because the recurrence rate is so high and the standard of care is what I call a standard of fail as it works for so few of us, I also do alternative and complementary therapies such as intermittent fasting, mistletoe injections, off-label drugs, and am pretty religious about staying as active as I can so I can recover better when I have complications from either the ovarian cancer or the cancer treatments.

Talk with others who have been there

It's been most helpful meeting others online who have or have had the same cancer and who can help with practical information about surgery, chemo, recovery, and living with the fatigue, anxiety, and despair that comes with a recurrent ovarian cancer diagnosis. I'm also eager to learn from the cancer unicorns who defy statistics and live years longer than predicted.

I have a great medical team and they share clinical and medical information, which is important, but even more important is meeting other survivors who can share what it's like to parent, work, partner, and manage the disease and treatments while living a life.

My advocacy work with the Ovarian Cancer Research Alliance (OCRA)

My advocacy is through the Ovarian Cancer Research Alliance (OCRA) helping to share my personal experiences, mostly around my diagnosis/misdiagnosis with medical students. Until and unless we have oncologists, surgeons, and researchers who can move the needle which has been pretty stagnant for four decades, we will continue to have high rates of recurrence, misdiagnosis and low rates of cure, and a limited lifespan.

My prognosis isn't any better than my Nana's was in the late 1980s when she had the same disease. Most primary care docs, nurses, and too many GYNs just don't know enough about ovarian cancer. I'm far more interested in getting the medical community to do more to treat, prevent, and effectively diagnose ovarian cancer than I am in spreading awareness of symptoms about the disease which I think is generally a waste of money since most medical providers don't accurately diagnose or even consider ovarian cancer even when we do go and present with our symptoms. I also volunteer, when I'm feeling well enough, as part of the CCC-19 consortium looking at how COVID-19 impacts those of us in the cancer community.

Finally, I'm part of an Advocates Collaborative and work with, meet, network with other cancer advocates to learn what is common among all cancer types as well as what is not. I'm on disability as I can no longer work but I do like volunteering, though I can only do so a limited amount of time because it makes me feel like I'm making a difference. Luckily, all volunteer work is very flexible and I can do work when I am feeling well enough.

Both a trauma survivor advocate and ovarian cancer advocate

It's strange to say, but I think it has been helpful as I have learned that often survivors know more about what does or doesn't help, as was the case with PTSD, and only later did the medical community come around to discover what we had shared and known, i.e. that talk and traditional therapy can make trauma and PTSD worse and that somatic and body-based healings could help more.

For a long time, those things weren't even covered by insurance because they weren't "evidence-based" even though what was "evidence-based" was not helpful. I have a healthy skepticism about the standard of care and am always on the lookout for people who live long and well, despite advanced disease or who have a decent quality of life even living with cancer, as that makes me hopeful.

I am also aware that just having had PTSD as an adult puts people at a higher risk of ovarian cancer. I also know that those who have experienced adverse childhood experiences have twice the rate of cancer as those who have not. So while trauma itself is a risk factor, being a trauma survivor and advocate, with a lot of healing under my belt means I have a lot of tools to help regulate my nervous system. For that, I am grateful. In particular, since my diagnosis, I have done a lot more guided imagery and expressive writing which were also helpful to me for healing from traumatic stress.

Opening up about my trauma and ovarian cancer

I am not sure if or how it has helped me but I do it to help others so that maybe they will get diagnosed earlier and so that medical systems will change to better serve, prevent, and treat all gyno cancers, and to hopefully find a way to detect and effectively treat ovarian cancer. I think of all the women in clinical trials in the past forty years who have lost their lives to ovarian cancer, who have participated in clinical trials, and I don't want these women to be forgotten. I want medicine to treat our lives as though they matter and do better for those of us who are diagnosed. Despite lots of headlines that note how many new drugs and treatments there are for ovarian cancer, for most of us with the disease, we aren't living longer or better, and so the fact that there are more FDA approved drugs that give us days, weeks, or maybe months is underwhelming. We want years and decades, and better quality of life and less brutal side effects to treatment.

The only other thing I would add is that while I'm angry and disappointed by the lack of advances in the treatment of ovarian cancer, on a personal level, I have never felt so loved and supported. I am grateful to have health insurance, disability, and both of these things give me more peace of mind than I'd have without them. Too few don't have access to good healthcare, to vacation or leave or disability, and this means financial and emotional stress on top of a health crisis. I'm aware of my good fortune and eager to make sure that all of us in the ovarian cancer community remember that we need to reduce the stress to parents and the financial toxicity, and the lack of equity in care and access to treatment.

To learn more about Cissy's story and how adverse childhood experiences can impact adult health, you can listen to her guest appearance on the Clearity Foundation Cancer Connections podcast.