Sunday, August 13, 2017

#Dazzle4Rare - Rare Disease Campaign 2017




We are pleased to once again support the #Dazzle4Rare Campaign sponsored by @hesaonlineorg. Last year was the first time we partnered with #Dazzle4Rare to raise awareness of rare diseases. You may read least year's blog post here.

A number of gynecologic cancers are considered rare diseases by the NIH. Ovarian, Endometrial/Uterine, Fallopian Tube, Vaginal and Vulvar Cancers are rare as are the two gynecologic cancers we discussed during this month's chat, Primary Peritoneal and Gestational Trophoblastic Disease. 

You may learn more about how you can get involved in this year's #Dazzle4Rare Campaign at  https://www.daycause.com/hesaonlineorg/dazzle4rare-2017

Feel free to share tweets like this one from August 13 to the 20th.

#Dazzle4Rare Learn about PPC & GTD rare gynecologic cancers http://gyncsm.blogspot.com/2017/08/august-92017-chat-you-never-heard-of.html #gyncsm

or

#Dazzle4Rare Vulvar, Vaginal and Fallopian Tube are rare gyn cancers   http://gyncsm.blogspot.com/2016/02/february-chat-rare-gyn-cancers-vuvlar.html #gyncsm

If you would like to share your story with a rare gynecologic disease with the #gyncsm community please e-mail us.


Dee and Christina
Founders, #gyncsm Community

Wednesday, August 9, 2017

August 9,2017 Chat: "You never heard of Primary Peritoneal Cancer or GTDisease?"

This month we were pleased to raise awareness and provide information on two rare gynecologic diseases - primary peritoneal cancer (PPC) and GTD (Gestational trophoblastic disease).

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? 


#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 

Dee
Co-moderator #gyncsm Chat

RESOURCES: 

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
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4922728/

@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/)


GTD

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

Friday, August 4, 2017

August #gyncsm Chat - "You never heard of Primary Peritoneal Cancer or GTDisease?"

In the past three years we have hosted chats dedicated to a number of the different gynecologic cancers - Cervical, Endometrial/Uterine, Fallopian Tube, Ovarian, Vulvar and Vaginal. This month we are going to discuss two more of the rare gynecologic cancers - primary peritoneal and GTD (Gestational trophoblastic disease).



What are these cancers?

Primary Peritoneal Cancer (PPC) forms in the peritoneum (the tissue that lines the abdominal wall and covers organs in the abdomen), and has not spread there from another part of the body. Primary peritoneal cancer sometimes spreads to the ovary. It is similar to ovarian epithelial cancer and is staged and treated the same way.
-NCI Definition

In data from 1995-2005, Goodman* found that the incidence rate in the U.S. for PPC was 6.78 per million women compared to 119 per million for ovarian cancer. Women with PPC were diagnosed at a later age (mean 67 years) than ovarian cancer (mean 63 years). (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2706690/)

GTD (Gestational trophoblastic disease) is a rare condition in which abnormal cells grow inside the uterus from tissue that forms after conception (the joining of sperm and egg). This tissue is made of trophoblastic cells, which normally surround the fertilized egg in the uterus and help connect the fertilized egg to the wall of the uterus. These cells also form part of the placenta (the organ that passes nutrients from the mother to the fetus). Most GTDs are benign (not cancer) and do not spread, but some types are malignant (cancer) and spread to nearby tissues or other parts of the body. The two main types of GTDs are hydatidiform mole and choriocarcinoma. Also called gestational trophoblastic disease, gestational trophoblastic tumor, and GTT.
-NCI Definition

GTD occurs in 1 out of 1000 pregnancies in the US. It less than 1% of all gynecologic cancers. GTD is more common in Africa and Asia than in North America. (http://www.cancer.net/cancer-types/gestational-trophoblastic-disease/statistics)

You can learn more about GTD or Primary Peritoneal Cancer by joining our chat and reading these pages on the NCI website.

You can also read a GTD survivor story here on our blog:
http://gyncsm.blogspot.com/2015/04/survivors-story-gtd-and-me-story-of.html

Part of #gyncsm's mission is to support those impacted by all gynecologic cancers. One way we can do this is to offer information on rare gynecologic cancers and support survivors of those cancers. #gyncsm will be participating in the #Dazzle4Rare social media campaign during August 13-19. Check out that tag to learn more about rare disease and share your own story.

We hope you will join us as we raise awareness of the risks of these rare gynecologic cancers, support the women impacted by them, and support the clinicians and researchers who focus on treating these rare cancers.

We look forward to chatting with you on Wednesday, August 9th at 9pm EST (8pm CST/ 6pm PST).

Guiding our discussion will be the following topic questions:
T1: What is Primary Peritoneal Cancer (PPC)? Why is it treated like ovarian cancer?

T2: Are there risk factors and symptoms of Primary Peritoneal Cancer (PPC)? Is there a known genetic mutation that increases risk?

T3: What is Gestational trophoblastic disease (GTDisease)? What types of GTDisease are there? Are they all malignant?

T4: What are the risk factors and other important things to know for GTDisease? Is there a known genetic mutation that raises risk?

T5: Are there any special support services for these two rare cancers? Where can people learn more?


Dee
Co-founder #gyncsm

*Goodman Study