Stop GCT, Ovarian Cancer Research Foundation

BE INFORMED! September is #OvarianCancerAwareness month! #GranulosaCellTumor is a rare, hormonally-active, malignant, sex-cord stromal form of #OvarianCancer that accounts for 2-5% of all ovarian cancers and may be lethal in advanced cases. Persistent signs and symptoms of GCT may include (varying combinations): excessive/post-menopausal bleeding (with elevated uterine cancer risk) or extended/disrupted/absent menses, bloating/water retention (possibly with ongoing breast ten...derness and elevated breast cancer risk), precocious puberty (young girls), possible aggravation of endometriosis, hirsutism, and/or PCOS-like symptoms, changes in bathroom habits (including constipation and/or frequent urination), fatigue/cognitive symptoms, and pelvic, back and/or abdominal pain. Note that the commonly-used CA125 test is NOT usually diagnostic in GCT and should NEVER be used as a single test to rule out the presence of this rare #OVCA if the result is negative. Relevant tests to help diagnose possible GCT may include: Inhibin A, Inhibin B, AMH/MIS, Estradiol, FSH, LH and imaging. Importantly, if you have persistent symptoms, as above, ask to see a Gynecologic Oncologist. OB/GYN Trans-Vaginal Ultrasound (TVU) is often the first point of detection for ovarian cysts, many of which may be benign. However, for optimal diagnosis and care in the presence of possible GCT or other ovarian cancer, see a GYN/ONC. Do not allow an OB/GYN to perform a cystectomy of your ovarian cyst of *unknown origin* until you speak with a specialist. Do you have questions about ovarian GCT? Do you need help with information and advocacy? If so, send us a message! We're here to help! Note: If you are #FTM #Transgender and retain your ovaries and/or are in transition, you may still be at risk for developing ovarian cancer, including GCT (risk unknown vs. chronic testosterone use). Your awareness and health matter, and it is extremely important to find compassionate, respectful, gender-supportive care so that you can have regular check-ups. #StopGCT is open to helping FTM transgender individuals manage their ovarian cancer risk. [The image below includes an example of StopGCT's advanced imaging technical advocacy. It shows the 3D segmentation of a large pelvic GCT (in yellow). StopGCT's advocacy significantly improved this patient's care. Image used with permission.]

What does it mean to be Granulosa Cell Tumor ovarian cancer survivor? From my perspective as a GCT caregiver and avatar, it means 17 years of fighting for life, information, innovation, awareness and survival, and offering care and comfort to those around me. It is the triumph of every day since diagnosis and the hope and possibility of whatever tomorrow may bring. It also means living with the specter of loss and grief, of pain and uncertainty, and of the voices that have fa...ded around us as we strive to remain strong for the battle ahead. Today is a day to reach for the horizon and celebrate every moment of the journey along the way. For as much as GCT has taken, I am very thankful for the people and purpose it has brought to my life, and for the reminder that the most important thing we can do with every moment is to fight darkness with advocacy and help others stand and meet the dawn. [Photo: A New Dawning by Doris C. Metzger] #ovca See more

Recently, I said goodbye to a woman I have known for 30 years. I first met her when I volunteered as a big brother for her son, Daniel. Big Brothers/Big Sisters told me that it required a minimum 1-year commitment, but after meeting Daniel, I knew it would be for life. It was a pivotal moment that connected all the threads of my future in ways I never could have imagined. Over the years, I became a part of Anne's family and advocated for her throughout her recent cancer diagn...Continue reading

StopGCT is very sorry to hear that Terri Nickens Gerace lost her battle with GCT this week. She was a strong GCT advocate and will be missed by all. Condolences to her family and friends. https://www.dignitymemorial.com//bato/terri-gerace-9007619

For the past few weeks, I have been on a care vigil for an unmarried person with advanced cancer who suddenly required hospitalization. The long hours in the hospital, especially early on, highlighted all of the challenges that those with cancer and related compromise must endure every step of the way. It also emphasized how important the role of technical advocacy is in care and recovery, given all the issues that can arise during hospitalizations. Our team of 6 close friend...s and family made sure that someone was present around the clock in conjunction with other hospital sitters. Our vigil made a critical difference in sense of support, quality and timeliness of care, increased physician case focus and also led to a faster recovery and smoother transition to rehab. Research shows that those who are single vs. married may have a smaller support network around them, increased cancer mortality, may be treated with bias by medical professionals and may be less likely to receive the most aggressive treatment. These observations date back to the ‘80s, and in 2013, the Journal of Clinical Oncology (JCO) published the results of a large-scale study entitled Marital Status and Survival in Patients with Cancer (https://ascopubs.org/doi/10.1200/JCO.2013.49.6489). In 2018, there was an interesting interview with Dr. Joan DelFattore, Ph.D. of University of Delaware published in NPR (https://www.npr.org//why-cancer-treatment-can-differ-for-t ). And, last month, the NEJM published Dr. DelFattore’s analysis entitled Death by Stereotype? Cancer Treatment in Unmarried Patients (https://www.nejm.org/doi/10.1056/NEJMms1902657). You can read about it in the article: Bias Against Single People Affects Their Cancer Treatment (https://www.sciencedaily.com/releas/2019//190909121243.htm). So, whether or not you have #GCT, other #OvarianCancer, or #Cancer in general, assemble a strong team that can accompany you to appointments, procedures, and hospitalizations. Your team can watch out for you, support you and, importantly, act on your behalf as your designated medical proxy any time they are needed (assuming you have elected a proxyand you should!). It is very important that your care providers know that you have a strong network around you so that you will not be subject to any potential treatment bias or neglect when you are at your most vulnerable and so that you will have a chance at the best possible treatment and outcome, no matter what the care setting or phase of treatment might be. See more

StopGCT has been notified of the grantee for its donation to the CRS at the end of last year. Congratulations to the Dr. Mary Hitt Lab and Powel Crosley at the University of Alberta! The Société de recherche sur le cancer / Cancer Research Society has awarded a total of CAN$120K (~US$90K), including 50% matching funds, to support 2 years of research for the Hitt Lab proposal entitled "Combination of a novel TRAIL-expressing oncolytic virus with a caspase-3 activator for treatment of granulosa cell tumours." Per the CRS, there was no conflict of interest in the adjudication of this proposal or in the award, and it was highly-ranked among all grant applications. For more information about this donation, please see the earlier posts on our page from Oct/Nov of 2018. See below for the abstract. #ovca #ovariancancer #granulosacelltumor

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I had hoped to make it to the Seattle Hyatt Regency this morning for the GCT meeting, but yesterday was a heavy work day and I ended up with a very late start for my drive. If anyone happens to see this message, please say hi to the group for me. However, I will arrive in Seattle later today and will be at the OCRA conference all weekend. If you'd like to say hi, catch up and/or discuss your case, come and find me in the exhibitor's room or reach out via facebook. Looking forward to it! - Davey

StopGCT is pleased to announce that it is now a 2019 Community Partner for the Ovarian Cancer Research Alliance OCRA! For more information about this great organization, see http://ocrahope.org. #GranulosaCellTumor #OVCA