Jessica lives in Manassas, Virginia, and was diagnosed with Sertoli-Leydig cell ovarian cancer. What has been your frustration in having a rare form of ovarian cancer? It took over 8 years to get diagnosed. Doctor after doctor dismissed me and categorized me into having PCOS. My endocrinologist knew something was wrong but couldn’t figure it … Continued
April lives in Federal Way, Washington, and was diagnosed with Müllerian clear cell carcinoma. What has been your frustration in having a rare form of ovarian cancer? My biggest frustration is finding effective treatments and battling my insurance company to approve treatments. My insurance continues to deny treatments like immunotherapy, calling it investigational because there … Continued
Heather lives in Muskegon, and was diagnosed with small cell carcinoma, hypercalcemic type. What has been your frustration in having a rare form of ovarian cancer? My local doctors shoved it off as pregnancy symptoms or being a hypochondriac. I was “too young” to have ovarian cancer. I was having awful pain and vomiting while … Continued
Renee lives in Cadillac, and was diagnosed with carcinosarcoma. What has been your frustration in having a rare form of ovarian cancer? I became frustrated when I was not given much information from my gynecologic oncology team about my cancer. I had to resort to the internet to learn about it. Although my rare type … Continued
Jill lives in Bridgeport, Connecticut, and was diagnosed with grade 3, stage IVB squamous cell carcinoma. What has been your frustration in having a rare form of ovarian cancer? Relaying the severity of my diagnosis to family/friends is incredibly frustrating. I understand the need to focus on the positive, but realistically speaking, there are no … Continued
Brooke lives in Beloit, WI, and has small cell ovarian cancer, hypercalcemic type. What has been your frustration in having a rare form of ovarian cancer? All of the unknowns in my type of cancer. Unsure what to do at first, very little resources, etc. Without finding our Facebook group….I don’t know if I’d be … Continued
Tracy lives in Alexandria, Virginia, and was diagnosed with stage IV germ cell ovarian cancer at age 27. What has been your frustration in having a rare form of ovarian cancer? I was diagnosed with stage 4 germ cell ovarian cancer eight years ago at age 27. I was devastated and felt like my entire … Continued
Ingrid lives in Denver, Colorado, and was diagnosed with low grade serous ovarian cancer in 2019. What has been your frustration in having a rare form of ovarian cancer? I was diagnosed in January of 2019 with low grade serous ovarian cancer. My doctor said she had to look on Facebook to learn about this … Continued
Janice lives in NW Pennsylvania, and was diagnosed in 1997, at age 34, with stage II retiform sertoli-leydig cell ovarian cancer with mucinous heterologous elements. What has been your frustration in having a rare form of ovarian cancer? My frustration was getting my rare cell type identified correctly, then finding out the protocol was experimental. Where … Continued
Sally lives in Mechanicsville, VA, and was diagnosed with a granulosa cell tumor. What has been your frustration in having a rare form of ovarian cancer? The most frustrating thing for me is that there is no standard of care and very little research. So little is known about granulosa cell tumor that one of … Continued
Anne lives in Morton, PA, and was diagnosed with small cell carcinoma of the ovary, hypercalcemic type. What has been your frustration in having a rare form of ovarian cancer? My frustration with having a rare form of ovarian cancer is the lack of doctors with knowledge and/or experience in treating women with SCCOHT. I … Continued
Karien lives in Kingaroy, Queensland, Australia and was diagnosed with a granulosa cell tumor. What has been your frustration in having a rare form of ovarian cancer? No doctors or surgeons knowing of my diagnosis, no research into it. When I go to a hospital or doctor (I live rural) they just send you home and … Continued
Get email updates about research news, action alerts, and ways to join the fight.
