Judy is a research scientist with a passion for travel and has lived all over the United States and in England. When she was 39, she described having “mystery symptoms.” After going to her gynecologist, it was eventually revealed that she had a rare form of ovarian cancer called granulosa cell tumor or GCT. As someone who studied health care-related issues and who was newly diagnosed with cancer, she was able to see cancer care from two different sides.
Having a rare cancer diagnosis presented unique challenges. Judy’s form of ovarian cancer responded to treatment, such as chemotherapy, in a different way than other ovarian cancers, so it was more difficult for her oncologists to create an effective treatment plan. As a researcher, she wanted to find out more, but it was challenging to find information about her specific cancer.
To others coping with a rare cancer diagnosis, Judy recommends listening to your intuition, advocating for yourself and asking questions, even if they seem minor.
She also stresses the importance of both genetic testing, because she was able to confirm that her particular cancer was not inheritable and informed her family, as well as biomarker testing, which can be crucial in determining cancer diagnoses and treatment plans, as they provide important information about the presence and behavior of cancer cells. Judy was not offered biomarker testing until after her cancer recurred. She says that biomarker testing would have likely caught the recurrence earlier, when it was not detected by scans or physical exams.
Being diagnosed with cancer at 39 presented unique challenges. After she had undergone surgery, she had already entered her 40s and missed the cutoff for young adult support groups. She found other support groups for adults, which were helpful, but she was almost always the youngest participant. Most of the people in those groups were not facing the challenge of working full time with a cancer diagnosis. “Cancer is already such an isolating experience and having it happen when I was 39 made it doubly so.”
A strong support network was important during her cancer experience. She had a circle of family and friends who she deliberately kept small, saying that the quality of support was more important to her than the quantity of people in her support network.
“Four-legged friends can also be a support.” After her initial diagnosis, she found support from her rescue dog and continued volunteer dog walking at her local animal shelter after she lost her dog.
There was also online support, including a Facebook group specific to her type of cancer. “It has been such a godsend to see these posts from time to time from people who just need to vent, or have some questions or information - they just need a little bit of support. To be able to be a part of that group has been huge. I underestimated how much support you could get just by reading posts online.”
CancerCare’s free individual counseling was also an important form of support for Judy, who described it as “a gift you give to yourself.” She reached out to CancerCare because she wanted to speak with someone professionally trained, to navigate complicated emotions associated with cancer, such as anxiety and overwhelm. “I’m so glad I found CancerCare and was able to access services that really helped me take care of the whole emotional-mental aspect of cancer. That’s so easy to neglect amid all the physical parts of it.”
Even while facing the negative aspects of cancer, Judy finds hope by experiencing simple pleasures, such as a cup of coffee or tea in the morning, talking with someone in her support network and learning a cool fact online. “You can still have these beautiful moments in your life.”