As part of our ongoing efforts to raise awareness of gynaecologic cancers, survivorship issues, and provide education during Gynaecologic Cancer Awareness Month, IGCS Advocacy Committee Member, Ms. Eva-Maria Strömsholm was invited to write a guest blog to bring more awareness to rare gynaecologic cancers.

A rare cancer survivor herself, she is the co-founder and vicechair of Gynaecological Cancer Patients in Finland. September is Gynaecologic Cancer Awareness Month and September 30th is recognized as Rare Cancer Day, spearheaded by the NORD Rare Cancer Coalition®.

Living with Rare Gynaecologic Cancer

IGCS-IGCANetwork Guest Blog
September 30, 2023

Eva-Maria Strömsholm, Finland
Teacher, Nurse
Co-founder and Vice Chair at Gynaecological Cancer Patients in Finland
Member of IGCS Advocacy Network
Patient advocate, rare cancer patient and survivor

The challenges of living with a rare gynaecological cancer
Identifying problems and seeking solutions

People usually think that gynaecologic cancers are uncommon — and rare forms of gynecologic cancers, even more so. But rare cancers and not as rare as you might think. There are women out there who are suffering from or have survived a rare gynaecological cancer. I am one of them. 

I was diagnosed with a rare gynaecological cancer, Dysgerminoma, in 2008 when I was just 27 years old. As a rare cancer patient, I have struggled to find information about my form of cancer. And now, as a patient advocate, I have met so many women just like me and I know that I am not alone.

There are specific challenges for the patient with a rare cancer:

  • Late or incorrect diagnoses
  • Lack of access to the right therapies
  • Lack of access to good clinical expertise
  • Very limited number of clinical studies because the rare cancer patients are so few
  • Less interest in research to develop new therapies
  • Too few available registries and tissue banks

(Source: Rare Cancers Europe)

As a patient advocate and Co-Founder of a gynaecological cancer association in Finland, I’ve spoken with many patients and given this a lot thought over the last 15 years. These are some of the problems I’ve experienced and observed.

It is much too difficult for rare cancer patients to find information about their disease. Studies show that patients have much less anxiety about their diagnosis if they have access to good information about their illness or 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. Valuable time is wasted.

Because there are less patients, rare cancers are not studied as extensively as other diseases, 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. This means the development of new therapeutics and drugs targeted to cure these rare diseases is that much more difficult.

The role of pathologists in diagnoses is so important — they need to know about rare cancer tissues and learn how they look. Because patients with rare gynaecological cancers are more uncommon, doctors don’t meet as many of these patients, and pathologists don’t see the rare gynaecological cancer tissues as often.

Expertise, research, and interdisciplinary teamwork are words that are so important for a rare cancer patient. We want to see more experts in this field, more research studies, clinical trials, and knowledgeable care teams. The phrase "quality of care" is so important. For patients with any form of cancer, including rare gynaecological cancers, it is important that they receive the best possible quality in their treatment. Good communication between the care team and the patient so that the patient can make informed decisions about their care.

It is important for patients to have access to experienced doctors and surgeons with knowledge about operating on these particular cancers and how to best treat them. It can be all too difficult for rare cancer patients to learn where to go to find the most qualified surgeon for their type of cancer. I would like to see more skilled specialists in this area. It has also been shown that there are better results when patients are treated in specialized hospitals where there is specialized expertise for rare gynaecological cancers. Some research shows that if the patient receives treatment and surgery at a cancer center where more is known about this form of cancer, the patient's prognosis is better.

It is my dream that someday there will be a specialized academic degree or field of study for clinicians and researchers to focus on rare gynaecological cancers. I would like to see bigger networks of doctors dedicated to rare gynaecologic cancers and more doctors joining these types of networks and societies. A network that allows and encourages discussion, collaboration, and the ability to ask each other questions. There must be good cooperation and good networks for doctors to make advances in this field. In Europe, we have EURACAN with a domain for rare cancer of the female genital organs and placenta.

I think it’s important for doctors to know more about rare gynaecological cancers so they can better explain the disease and treatment options but also help the patient find the right support and peer support.

Cancer patients often need to travel far from home to receive treatment at specialized hospitals — for rare cancer patients, it can be even more difficult to find the right facility. This takes the patient away from their home and away from their support network of family and friends. Yet another reason why rare cancer patients too often feel alone and isolated in their journey. All these obstacles can really take a toll on our mental health and wellbeing.

Peer-to-peer support for cancer patients is so important and even more of a challenge to find for patients with rare cancers. We are less likely to meet other people with the same type of cancer. Community is so important, not only for our mental health, but for practical reasons. If we can talk with each other and share information we can be better prepared for cancer treatment and feel empowered to ask more questions.

I certainly don’t have all the solutions and I know that there are many reasons why these problems persist and will continue to be a challenge for rare cancer patients. My goal here is to raise awareness of the struggles we face, make sure that we are seen, and encourage people to talk more openly about these issues.

This blog post was written by Eva-Maria Strömsholm to bring more awareness to rare gynaecologic cancers. She is the co-founder and vicechair of Gynaecological Cancer Patients in Finland. September is Gynaecologic Cancer Awareness Month and September 30th is recognized as Rare Cancer Day, spearheaded by the NORD Rare Cancer Coalition®.

Rare Cancer Support Groups

More information about rare cancers can be found here.