The story of Eva-Maria
People may think that gynaecologic cancers are not so common and to get a rare gynecological cancer is even more uncommon. I am one of few young woman who got a rare gynecological cancer. I was then 27 years old.
I was diagnosed with a rare gynaecological cancer, Dysgerminoma. I had many surgeries and hard chemotherapy. After the treatments I face a lot of long term-side effects from treamtments and those are hard to live with. Fatigue and menopause issues and also fertilityissues are my everyday life.
As a rare cancer patient, I have struggled to find information about my form of cancer but I am co-founder of Gynaecological Cancerpatients in Finland and try to help other patients get information. Even if you feel alone, you are not. But there are a lots of challenges for a rare cancer and a rare gynecological cancer patient.
It is difficult for rare cancer patients to find information about their disease. Another major problem for rare cancer patients is that it often takes longer to be diagnosed because there is so much lack of awareness about signs and symptoms. When diagnosis is late, the cancer has more time to spread, and treatment is delayed.
Because there are less patients, rare cancers are not studied as much as other more common cancers, and clinical expertise is lacking. There are not as many patients to participate in clinical trials, so it is difficult to organize those types of studies.
Expertise, research, and interdisciplinary teamwork are words that are so important for a rare cancer patient. I want to see more experts in this field, more research studies, clinical trials, and knowledgeable care teams.
We need more peer-support for rare cancer patients and more information. Awareness is a keyword. I hope that every doctor could have time to learn more about rare cancers and also signs so that we could get the diagnosis in time.