Tonight we were joined by 34 participants - survivors, advocates and health care providers - to chat about Rare Ovarian and Rare Gynecologic Cancers. While the NCI defines a rare cancer as a cancer that occurs in 15 out of 100,000 people each year, other definitions are used by different organizations and in other parts of the world.
Advice about finding health care providers who treat rare cancers included:
"Finding providers with experience with these cancers can be tough, but can be key to overall treatment and survival per studies."
"It is really important to ask your provider how many of these cases they have seen - and consider referral to a cancer center that has expertise. "
"With the rapid adoption of Telehealth, my hope is that all rare cancer patients will soon be able to consult (at least by video) with an expert in their disease."
You may find the transcript here and additional analytics here.
Here are some highlights from each topic question.
T1: What are the rare ovarian cancers types? How do they differ from the more common type? How do treatment and symptoms differ?
— Sarah Temkin (@temkins) September 10, 2020
- T1 Low grade #ovca - low chromosome instability, KRAS, BRAF, ERBB2 mutations with slow tumor development. https://t.co/T4bJO8Rloa
- T1 Low grade patients receive either carboplatin + paclitaxel followed by endocrine therapy or endocrine therapy alone. Endocrine therapy: letrozole , anastrozole, tamoxifen https://t.co/2wimorqtmh
- Some rare subtypes of ovarian cancer may be associated w/ (also rare) hereditary cancer syndromes while other rare subtypes have no known hereditary cause. Ask your healthcare team if you should meet w/ a genetic counselor for a hereditary cancer risk assessment #gyncsm
- Facebook has 2 groups for ovarian germ cell patients - Germ Cell Ovarian Cancer Support Group and Germ Cell Tumor Parent Network.
- Our research center @sloan_kettering seeks to understanding how patients with ovarian cancer differ with the goal of developing more customized therapies. As below, we have now genetically analyzed over 1800 ovarian tumors.
T2: Two other rare gyn cancers are vulvar and vaginal cancer. How are they diagnosed and how significant is the role of surgery? Any special treatments available for those cancers?
- A2: Vulvar and vaginal cancer are rare. Ask your doctor if something doesn't feel right (especially after menopause)! You might need a biopsy. Treatment is very individual based upon the site of the cancer
- Anatomically surgical treatment might be limited by how close the bowel and/or bladder can be to the tumor. Often radiation with or without chemotherapy is recommended.
- T2. Different types of #sarcoma can also occur in the vagina (as mine did) and the vulva. When systemic therapy -- such as chemo & targeted treatment -- is needed, sarcoma is generally treated by its subtype, rather than its location in the body.
- T2 Vulvar Cancer Symptoms: A lump or growth in or on the vulvar area or groin, patch of skin differently textured or colored, Persistent itching, pain, soreness, or burning in the vulvar area @cancerdotnet
- I teach our trainees, when in doubt - biopsy. Vulvar cancer can look very different for each patient. Better to be conservative!
T3: Last month we talked about endometrial cancer. How does uterine sarcoma differ from other cancers of the uterus?
- Different subtypes of #sarcoma are often treated differently. They are often not identified until after surgery. A woman with gyn sarcoma, which can be aggressive, may want to talk to a sarcoma medical oncologist
- T3: Thanks to @SuzieSiegel we have these resources listed on the #gyncsm blog: Uterine Carcinosarcoma gcsproject.org/carcinosarcoma… Endometrial Stromal Sarcoma ess-sarcoma.com Leiomyosarcoma: lmsdr.org and nlmsf.org Also for sarcomas overall: sarcomaalliance.org and curesarcoma.org
- We also have hundreds of women with uterine #leiomyosarcoma on the Facebook page for LMSDR.org. #gyncsm
- A3: Most cancers of the uterus arise from the endometrium. But sarcomas typically arise from the myometrium - either the muscle or the "glue" of the uterus.
T4: In the past we have talked about ovarian cancer developing in the fallopian tubes yet there is also a fallopian tube cancer. Does it differ from ovarian? Do treatments differ?
- In general, fallopian tube cancers are treated just like #ovariancancer - similar surgery, chemotherapy, and targeted therapy options
- Fallopian tube, ovarian and primary peritoneal cancer should be bundled by their histologic appearance (how they look under the microscope) rather than the site at which the tumor is identified. If you look hard enough most ovarian cancers will have originated in the tube
- T4 This gives a good overview of Treatments for Fallopian tube cancer https://emedicine.medscape.com/article/2056981-overview
T5: What is Gestational Trophoblastic Disease? Are there symptoms? What are the best treatments?
- T5 via @DanaFarber there are 3 types of GTD : Hydatidiform mole, or molar pregnancy, Choriocarcinoma, Placental-site and epithelioid trophoblastic tumors
- A5: Gestational trophoblastic disease is a neoplasm arising from the placenta. For some women this will resolve with time, others need treatment with chemotherapy.
- Gestational trophoblastic disease is an abnormal growth & development of the cells that usually form the placenta during pregnancy. The most common initial symptoms are heavy bleeding early in pregnancy.
- Sometimes it can be suspected on an ultrasound early in pregnancy. Usually a D&C is done to remove the abnormally developing cells. This usually is all that is needed to treat GTD.
- However, sometimes GTD can develop into an invasive cancer. There are a few types, but these are collectively termed gestational trophoblastic neoplasia.
- If this happens, GTN can be treated with chemotherapy (often methotrexate). In fact, GTN was one of the first cancers even to be successfully treated with chemotherapy.
- GTD — also know and complete or partial molar
pregnancies — develops after 1-3 per 1000 pregnancies. The main risks
include maternal age (both older and younger) and if the person has ever
experienced GTD before.
- Rarely, this is a life threatening disease. Multidrug chemotherapy is prescribed, sometimes with radiation. Choriocarcinoma can be diagnosed anytime after a pregnancy (normal or miscarriage) and the diagnosis can be tricky.
- Here are some PPC resources: foundationforwomenscancer.org/wp-content/upl… primaryperitonealcancer.org
- Even if you've had your ovaries removed, you could be at risk for PPC as it is related to the lining.
- T6 Here is an Article by @dorcarvajal on living with primary peritoneal. #gyncsm https://www.statnews.com/2018/10/04/peritoneal-cancer-women-men-doctors/?utm_content=buffer70cbe&utm_medium=social&utm_source=twitter&utm_campaign=twitter_organic
- T7 Challenge- Finding other patients with the same dx to offer advice and support. When I was initially dx I had trouble finding another Stage 3 OC patient to talk to. Thankfully I reach out to @CancerHopeNet and made my first connection. #gyncsm
- I think many of us are proponents of shared-decision making and collaboration between doctor and patient. You want a specialist with knowledge of your type of #gyncsm but you also want one that recognizes you know your body and your exact experience/goals best.
Christina and I are so happy to celebrate #gyncsm's 7th Anniversary with everyone tonight.
We will not be chatting in October but look forward to seeing you on November 11 at 9pm ET when @LHavrilesky @ShelbyDReed will be joining us to get input for a shared decision aid re: ovarian cancer and PARP inhibitors.
Stay well and safe.
Dee
