We had 43 people participate in the chat with a total of 1.56 impressions and 370 tweets in the hour. You may find more stats here and the complete transcript here via Symplur.
Below you may read some of the tweets shared in answer to our topic questions. For complete information please read the transcript or check the Resources at the end of the post.
T1: What is Primary Peritoneal Cancer (PPC)? Why is it treated like ovarian cancer?
- The peritoneum is a thin membrane that forms the lining of the abdomen. It covers all of the organs within the abdomen.
- PPC arises is in the peritoneum (lining of the abdomen). It responds to a similar combo of surgery and chemo used for ovar ca
- PPC is often diagnosed at stage III/IV but can still be completely cleared in the upfront setting
- The histology (cell type) of PPC is same as #ovariancancer and Fallopian tube
- And genetically the same as well. Also the same proteins are on the cell surfaces.
- The most common cell type of PPC, serous carcinoma, is also the most common cell type in #ovariancancer
- Important fact - a woman can get Primary Peritoneal Cancer even if her ovaries have been removed.
- PPC most commonly treated like epithelial ovarian cancer w/ surgery and chemo. NCCN guidelines: https://www.nccn.org/patients/guidelines/ovarian/index.html
- The only way to distinguish PPC vs. #ovariancancer is by path looking at the ovarian surface & stroma to see where cancer arises
T2: Are there risk factors and symptoms of Primary Peritoneal Cancer (PPC)? Is there a known genetic mutation that increases risk?
- #BRCA mutation can put pts at risk for PPC - even if the ovaries have been removed
- Primary #peritonealcancer in #BRCA carriers after prophylactic bilateral salpingo-oophorectomy #gyncsm ncbi.nlm.nih.gov/pmc/articles/P…
- The symptoms & Risk factors are the same for #PrimaryPeritoneal & Ovarian cancer
- Risk factors for PPC are the same as #ovariancancer - significant exposure to estrogen - early menarche, late menopause
- The major risk factor for Primary Peritoneal Cancer is advancing age. #gyncsm
- PPC symptoms are more commonly gastrointestinal - abdominal bloating, changes in bowel habits, and an early feeling of fullness.
- Like #ovariancancer, no effective screening for PPC
- Risk of PPC in BRCA positive patients following risk reducing BSO surgery is 1-3% in most studies
- All women w/ invasive epithelial PPC meet guidelines for genetic counseling & testing, just like ovarian cancer
T3: What is Gestational trophoblastic disease (GTDisease)? What types of GTDisease are there? Are they all malignant?
- Normal cells of the placenta, called trophoblast cells,
- a group of diseases from abnormal proliferation of trophoblasts-- these are cells from the placenta
- GTDisease is a group of rare diseases in which abnormal trophoblast cells grow inside the uterus after conception. #gyncsm
- Most GTD is not cancer and does not spread, but some types become cancer and spread to nearby tissues or distant parts of the body
- GTD buff.ly/2vkVH9e GTD: -Hydatidiform -Invasive Mole -Choriocarcinoma -Placental trophoblastic tumor -Epithelioid
- Molar pregnancy, persistent mole, invasive mole choriocarcinoma .. most need only a D and C. Some need chemo.…
T4: What are the risk factors and other important things to know for GTDisease? Is there a known genetic mutation that raises risk?
- Important to know: About 1/2 from molar pregnancies, 1/4 from miscarriages or ectopic and 1/4 from normal or preterm pregnancies
- Invasive GTN characterized into high risk and low risk subgroups which determines adjuvant chemotherapy
- GTDisease treatments include surgery (removing tumor only or hysterectomy), chemo and radiation
- Main GTDisease Risk: Age and previous molar pregnancy. Symptoms include abnormal vaginal bleeding and a larger than normal uterus.
- There's not known genetic mutation related to GTDisease. A family history of molar pregnancy has been found in rare cases.
- Ethnicity (Asian) also plays a role in GTD
- Also important to get chest CT. About 40% will have micrometastases to the lungs that were negative on chest x-ray
T5: Are there any special support services for these two rare cancers? Where can people learn more?
- Martha C. Kinnecom Primary Peritoneal Cancer Foundation primaryperitonealcancer.org
- You may want to contact @smart_patients which has online health communities
- There are a couple of centers nationally that focus on GTD bit.ly/2uqYvDi
- #RareDisease resources include: @GlobalGenes @RareAdvocates @RareDiseases @rarediseaseday #Dazzle4Rare
- Important to receive care for rare cancers with a specialist, such as a gynecologic oncologist
- Check out CART-WHEEL for rare cancers cart-wheel.org
- There are some support groups on FB for rare tumors facebook.com/groups/1542683…
#gyncsm is joining the #Dazzle4Rare campaign August 13-19. Learn more about rare diseases and share your own story (https://www.daycause.com/hesaonlineorg/dazzle4rare-2017 )
We hope you will join us next month on Wednesday, September 13, 2017 at 9pm ET for our chat A balanced life- advocacy, survivorship, new normal. And continue this discussion rare diseases on Smart patients at https://www.smartpatients.com/partners/gyncsm
Co-moderator #gyncsm Chat
Primary Peritoneal Cancer
NCCN Guidelines for OC and PPC - https://www.nccn.org/patients/guidelines/ovarian/index.html
Primary Peritoneal Cancer in BRCA carriers after prophylactic bilateral salpingo-oophorectomy
@gyncancer Primary Peritoneal Disease Information : http://www.foundationforwomenscancer.org/types-of-gynecologic-cancers/primary-peritoneal/
PPC from Macmillan UK http://www.macmillan.org.uk/information-and-support/primary-peritoneal-cancer
PPC information Medscape http://emedicine.medscape.com/article/2156469-overview
Peritoneal Cancer Clinical Research Trials @CenterWatch https://www.centerwatch.com/clinical-trials/listings/condition/553/peritoneal-cancer
Goodman :Incidence of Ovarian, Peritoneal, and Fallopian Tube Carcinomas in the United States, 1995–2004 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2706690/)
Gestational Trophoblastic Disease Treatment (PDQ®)–Patient Version via @theNCI https://www.cancer.gov/types/gestational-trophoblastic/patient/gtd-treatment-pdq#section/all
Patient Information on Gestational Trophoblastic Disease from @gyncancer http://www.foundationforwomenscancer.org/types-of-gynecologic-cancers/gestational-trophoblastic-disease-gdt/
What is GTD American Cancer Society https://www.cancer.org/cancer/gestational-trophoblastic-disease/about/what-is-gtd.html
Gestational Trophoblastic Disease via @CancerDotNet http://www.cancer.net/cancer-types/gestational-trophoblastic-disease