Gynecological cancers aren't as common as breast cancer, but the American Cancer Society estimates that nearly one-third of people diagnosed with these cancers in 2026 will die from them.
The Rochester-based Breast Cancer Coalition discovered 12 years ago that people living with or who have had these cancers in Western New York have similar or the same gaps in resources and support as people with breast cancer.
Executive Director Christina Thompson says, and research supports, that part of the reason many gynecological cancers are caught in later stages, and are then more deadly or difficult to treat, is because of gaps in screening and education.
This week on the Disabilities Beat, we speak with Thompson about her organization's work to address long-term gaps in support for people who have or have had gynecological cancer. We also preview their 6th annual webinar series, held every Wednesday in September for Gynecological Cancer Awareness Month.
Thompson says the topics, including bladder changes after hysterectomy or menopause, cancer-related cognitive impairment, and managing osteopenia and osteoporosis, can help not only patients, but also help providers, family members, and people with similar health concerns.
You can view upcoming webinars and register by clicking here. You can see the coalition's previous webinars by clicking here.
TRANSCRIPT
This is a rush transcript created by a contractor and may be updated over time to be more accurate.
Emyle Watkins:
Hi, I'm Emyle Watkins, and this is the Disabilities Beat. Gynecological cancers aren't as common as breast cancer, but the American Cancer Society estimates that nearly 1/3 of people diagnosed with these cancers in 2026 will die from them.
Christina Thompson:
Gynecologic cancers, it's an umbrella term, which includes ovarian, uterine, endometrial, fallopian tube, vulva, vaginal cancers, and primary peritoneal cancers.
Emyle Watkins:
Christina Thompson is the executive director of the Breast Cancer Coalition, which serves people living with, or who have had breast cancer or gynecological cancers in the 27 westernmost counties of New York.
Christina Thompson:
We started as a very grassroots... several women who had been diagnosed with breast cancer sitting around a kitchen table, really trying to put into practice what they felt had been missing when they went through their own treatment.
Emyle Watkins:
In 2018, at 39 years old, Thompson was diagnosed with stage 3 breast cancer after finding a lump in her armpit. A dental hygienist at the time, her employer was small enough that they didn't have to provide health insurance. The mother of two young daughters ultimately underwent chemotherapy, surgery, radiation, and immunotherapy, but because of the Breast Cancer Coalition, she didn't go through it alone.
Christina Thompson:
I got matched up with someone who had gone through the same treatment for the same type of cancer that I had, that I could talk to. I was given this beautiful PALS Pak, which was filled with a handmade quilt, a really great resource book about breast cancer, a bunch of comfort items.
Emyle Watkins:
The coalition started focusing on gynecological cancers in 2014.
Christina Thompson:
I think for people with breast cancer, there are a lot more resources out there, because breast cancer is such a commonly diagnosed cancer, the number one cancer for women, one in eight, you hear those statistics. They're very different than gynecologic cancer statistics, which are fewer, and therefore may be perceived as not getting as much attention, as much funding, as much of that long-term support. And so we think that that's very, very important.
Emyle Watkins:
Thompson says the coalition started supporting people with gynecological cancers because many of the gaps in care end up being the same as for people who have had breast cancer.
Christina Thompson:
A really common one that we talk about all the time is intimacy after breast or gynecologic cancer treatment, right? You're talking about two of the most intimate parts of the female body that may have been removed, replaced, surgically altered, and still, "How is that going to impact my partners and my relationship after the fact?" And so we might've had a totally different treatment plan, and surgeries and things, but we're thinking about the same thing, and so we need those resources.
Emyle Watkins:
The coalition fills in the gaps in long-term support that people may not find in the medical system through a variety of resources such as wellness classes, support groups, mentorship, education, webinars, and more. They also have an advocacy committee and provide seed grants for local research that requires inputs from advocates who have had cancer. They have a fluent Spanish speaker on staff and offer American Sign Language interpretation.
Christina Thompson:
We envision in the future seeing folks who are maybe transgender that are dealing with one of these diagnoses. We've had men come in our doors with breast cancer. Cancer does not discriminate, and we just want to make sure that people have the resources and support they need when they're dealing with this.
Emyle Watkins:
September is Gynecological Cancer Awareness Month. Each Wednesday during the month, the coalition is hosting a free webinar series with local experts. It's the sixth year they're doing it. Thompson says the topics, including bladder changes after hysterectomy or menopause, cancer-related cognitive impairment, and managing osteopenia and osteoporosis can help not only patients, but also help providers, family members, and people with similar health concerns.
Christina Thompson:
A lot of our topics are chosen really because the people who are utilizing our programs and services have requested it.
Emyle Watkins:
Thompson says, and research supports, that part of the reason many gynecological cancers are caught in later stages, and are then more deadly or difficult to treat, is because of gaps in screening and education. Thompson says the coalition educates and empowers people to become their own best advocate.
Christina Thompson:
I'd want them to know that they are driving this train, that they may run into people who say no to them. They may run into people who say, "You're too young to have cancer." I've heard things like that, and if you feel like something is wrong, push until you get the answers you need.
Emyle Watkins:
We have more on the webinar series and the coalition on our website at btpm.org. I'm Emyle Watkins. Thanks for listening.
