Nov 8, 2017 #gyncsm Chat: Spotlight on Cancers of the Uterus

This month we put the spotlight on Cancers of the Uterus. We discussed risk factors, symptoms and treatments of endometrial / uterine cancers as well as uterine sarcomas. 

We were pleased to have 24 participants join us including the Peach Society an organization devoted to raising awareness of endometrial cancer. 

You may find a complete transcript here and more analytics here. 

The following are some sample responses to out topic questions. You may find additional resources shared with the community at the end of the post. 

T1: What are the risk factors for #endometrialcancer #uterinecancer? Do genetics play a role? 

• Risk factors for uterine cancers from @cancerdotnet https://t.co/wptvJ7lIGE
• T1: uterine/endometrial cancer risks include: Age, obesity, reproductive history, hormone therapy, as well as genetics
• T1: #endometrialcancer is the malignancy most closely associated with obesity. Of course genetics #Lynch can play a role as well.
• About 3% of endometrial cancer is due to a hereditary cause, called Lynch syndrome. If you have a family history of endometrial and colon cancers,you may want to meet w/ a Genetic Counselor to learn more  
• T1: some of the genetic links are Lynch syndrome (up to 60% risk), Cowden syndrome (up to 30% risk), and a small risk with PJS
• All of these factors increase systemic estrogen which is implicated in the most common types of #endometrial cancer. 

T2: How are cancers of the uterus diagnosed? What are the signs and symptoms and, if diagnosed, did you experience these?

• T2: Any vaginal bleeding after menopause is uterine cancer until proven otherwise.
• T2 Via Canadian Cancer Society Signs and symptoms http://www.cancer.ca/en/cancer-information/cancer-type/uterine/signs-and-symptoms/?region=on&utm_content=buffere910b&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer
• @OncLive: Dr. Haldorsen on the Role of Imaging in the Diagnosis of Endometrial Cancer  http://www.onclive.com/conference-coverage/esgo-2017/dr-haldorsen-on-the-role-of-imaging-in-the-diagnosis-of-endometrial-cancer
• My main symptom included abnormal bleeding.

T3: What treatments are used for #endometrialcancer #uterinecancer? What are the common short and long term side effects? 

• @CancerDotNet website : surgery/radiation/ chemotherapy https://www.cancer.net/cancer-types/uterine-cancer/treatment-options
• T3 Most are treated surgically with up to 50% receiving radiationa as well. 10-20% receive chemotherapy.
• T3: We discussed radiation oncology during our July 2017 #gyncsm chat - recap and resource links: http://gyncsm.blogspot.com/2017/06/radiation-oncology-what-is-it-when-is.html
• Post treatment side effects are related to the type and intensity of treatments used
• vaginal brachytherapy is a kind of radiation treatment

T4: How do uterine sarcomas differ from other endometrial/uterine cancers? What are the types? Differing symptoms and treatment?

• Sarcomas are more rare, and often more aggressive. They often start in the muscle tissue of the uterus
• T4: Uterine Carcinosarcoma (formerly called MMMT) - info: http://gcsproject.org/carcinosarcoma-facts/
• T4: Leiomyosarcoma is a rare type of uterine sarcoma.
• T4: Endometrial Stromal Sarcoma - Info: http://ess-sarcoma.com/
• T4 : Brittany Sullivan’s Story w/ Sarcoma https://connection.asco.org/magazine/society-member-news/conquering-sarcoma-clinical-research-doctor-and-her-patient-are-paving

T5: Are there any special support services for cancers of the uterus? Where can people learn more? 

• T5: For all the gynecologic cancers, @GYNCancer (The Foundation for Women's Cancer (FWC)) had great guides and resources.
• T5: Resource | Foundation for Women's Cancer (2017): Endometrial Cancer - Your Guide http://www.foundationforwomenscancer.org/wp-content/uploads/FWC-Endometrial-Cancer-Your-Guide-website.pdf
• For support some great organizations like @CancerSupportHQ and for one on one support @CancerHopeNet are two I would recommend.
• Short overview of uterine cancer via @gyncancer http://www.foundationforwomenscancer.org/category/blog/uterine-cancer/
• @Peach_Society: You can get more information at http://www.peachsociety.net/ 

Please join us next month on Wednesday, December 13, 2017 (9pm ET/ 8pm CT / 6PM PT) for a chat on  I've Survived - Dealing with Side Effects and Other Losses

Wish all the members of our community a very Happy Thanksgiving!

See you in December. 

Dee
Co-founder #gyncsm 

RESOURCES

@MayoGynecology video obesity and endometrial cancer https://t.co/rJcT0ryuRL

Peach Outreach symptom cards, visit: http://peachoutreach.com/symptomcards/

Imaging and endometrial cancer diagnosis http://www.onclive.com/conference-coverage/esgo-2017/dr-haldorsen-on-the-role-of-imaging-in-the-diagnosis-of-endometrial-cancer

Nov #gyncsm Chat: Spotlight on Cancers of the Uterus

This month we will be putting the spotlight on Cancers of the Uterus or Cancers of the Womb as it is called in the United Kingdom. We will discuss risk factors, symptoms and treatments of endometrial / uterine cancers. We will also discuss uterine sarcomas and how they differ from other cancers in presentation and treatment.

Guiding our discussion will be the following Topic Questions:

T1: What are the risk factors for #endometrialcancer #uterinecancer? Do genetics play a role?

T2: How are cancers of the uterus diagnosed? What are the signs and symptoms and, if diagnosed, did you experience these?

T3: What treatments are used for #endometrialcancer #uterinecancer? What are the common short and long term side effects?

T4: How do uterine sarcomas differ from other endometrial/uterine cancers? What are the types? Differing symptoms and treatment?

T5: Are there any special support services for cancers of the uterus? Where can people learn more? 

You will find helpful information on this month's topic in a booklet produced by the NCI What You Need to Know About - Cancer of the Uterus. 

We look forward to you joining us on Wednesday, November 8, 2017 at 9pm ET (8pm CT, 6pm PT).

Dee
#gyncsm Co-founder


Related Chats:
Radiation Oncology - What is is? When is it used? 2017
You never heard of Primary Peritoneal Cancer and Gestational Trophoblastic Disease? 2017
Gyn Cancer Awareness Month and Spotlight: Uterine and Endometrial Cancers 2015
 

Sarcoma Awareness Month - Add your support

Guest post by patient advocate Suzie Siegel (@SuzieSiegel)

Many women never hear of sarcoma until they get it.

Sarcoma Awareness Month can teach women about rare gynecological cancers — then give them hope and resources to survive.

The National Cancer Institute, the American Society of Clinical Oncology, the American Association for Cancer Research and the American Cancer Society all recognize July as Sarcoma Awareness Month.

But the White House and Congress have never made it official. Once again, sarcoma nonprofits have a petition going, and we would love to have your help. 

Please add your name to the petition to officially designate July as 

Sarcoma Awareness Month: 

https://petitions.whitehouse.gov/petition/officially-designate-july-sarcoma-awareness-month

Sarcoma is a cancer of muscle, bone and other connective tissues. It represents 20% of childhood cancer cases but only 1% in adults. It can arise anywhere in the body at any age, from newborns on up.

In women, sarcoma can occur anywhere in the reproductive tract although the uterus is the most common. The different types are:

1.     Carcinosarcoma (formerly known as malignant mixed mullerian tumor or MMMT). Sarcoma specialists often don’t consider this a true sarcoma.

2.     Leiomyosarcoma. The Cancer Genome Atlas is expected to separate gynecologic leiomyosarcoma from LMS found elsewhere in the body.

3.     Endometrial stromal sarcoma. It has been divided into low-grade, high-grade and undifferentiated uterine sarcoma.

4.     Adenosarcoma.

5.     Embryonal botryoides or rhabdomyosarcoma found in infants.

6.     PEComa.

Risk factors include previous pelvic radiation and use of Tamoxifen.

Women often are diagnosed first by an OB/GYN and may then be referred to a gynecologic oncologist. Many also choose to see a medical oncologist who specializes in sarcoma, too.

Sarcoma nonprofits can help women find specialists as well as financial and emotional help. Let us help you!

—————

I’m a 15-year survivor of metastatic leiomyosarcoma that started in my vagina and spread to my right lung. I volunteer for the Sarcoma Alliance, Sarcoma Foundation of America, Imerman Angels and MD Anderson Cancer Center’s MyCancerConnection. You can contact me at suziesiegel@tampabay.rr.com

Suzie Siegel is pictured here at SGO 2017 with Dr. Don Dizon
at her table for the Sarcoma Foundation of America

What's on your Mind? #gyncsm Open Mic Night -July 12, 2017

We didn't have a set series of topic questions for this month's chat but rather allowed our participants to share what was on their minds. We had nineteen participants and over 1.4M impressions. You may find more analytics from Symplur here.

The hour's discussion revolved around these main areas:

Emotional support of women after treatment

• I'm struggling in post treatment life. Unknowns, grief, plus effects from chemo, rads. :/
• Post-treatment is really tough for so many people. It's tough to go from the intensity of treatment to the uncertainty of after. 

A petition to make July Sarcoma Awareness Month which led to a discussion of - What is sarcoma? Which are gynecologic?

• Via @suziesiegel Sarcoma is a cancer of connective tissues. The main types of gyn sarcoma are leiomyosarcoma ,low- & high-grade endometrial stromal sarcoma, & undifferentiated uterine sarcoma. Some include carcinosarcoma
• Risk factors include exposure to radiation & use of Tamoxifen, plus genetic issues such as Li-Fraumeni Syndrome

Educating the public about the importance of HPV vaccination

• Caleb's Feet Foundation http://www.calebsfeetfoundation.org/ brings information about cervical cancer and the HPV vaccination to the community. 
• studies show pediatricians have a huge influence on whether kids get vaccinated - parents do listen to doc rec
• good to focus on doc's and then community influencers - churches, centers
• The @GlobalGenes site has some amazing free toolkits for health advocates. Can also check out blogs from @JBBC re: health marketing 
• HPV vaccination could reduce global deaths from #cervicalcancer by as much as two-thirds

Support for women cancer researchers 

• I really want to (1 day) discuss the lack of funding 4 female researchers, tasked w/ post BrCa Dx research
• Issues affecting women's health still does receive equitable share in research dollars. It's time that changes
• Awarding rates 4 female applicants (14.9%) are systematically lower than those for male applicants (17.7%) 

The science behind the connection between genetic mutations (other than BRCA) and how they may raise the risk of  Breast, Ovarian Color Cancer 

• I'm in a FB group for CHEK2 and many previvors reporting getting ovaries out though science isn't there yet on that.
• CHEK2 is the name of a gene...when there is an inherited change (mutation) in CHEK2 = some increased risk for specific cancers
• Risks to removing ovaries in these young women-->early menopause w/o known cancer risk reduction benefit

There is now more detail about Lynch-syndrome related ovarian cancer risk (also shows how little we know)! #gyncsm #gencsm pic.twitter.com/CUS0Vy4YoI

— Erica Bednar (@EMBOSU) July 13, 2017

You may find the complete chat transcript here.

Please scroll down for Resources mentioned during the chat.

Remember you can always join our discussion on the Smart Patients Platform. (https://www.smartpatients.com/partners/gyncsm )

Be sure to join us next month on Wednesday August 9, 2017 at 9pm ET | 8pmCT | 6pmPT  as we discuss "You never heard of Primary Peritoneal Cancer or GTDisease?".

Remember to tweet things of interest to our community by using the #gyncsm hashtag.

See you in August!

Dee
#gyncsm Co-founder

RESOURCES:

Petition to make July Sarcoma Awareness Month
https://petitions.whitehouse.gov/petition/officially-designate-july-sarcoma-awareness-month

Calebs Feet Foundation
http://www.calebsfeetfoundation.org/

Magenta Study Genetic testing study at MD Anderson
https://magenta.mdanderson.org/magenta_mobile/index.html

Sex Bias in Surgical Research
http://www.physiciansweekly.com/sex-bias-in-surgical-research/

@nccn guidelines for "Hereditary Colorectal Cancer"
https://www.nccn.org/about/news/ebulletin/ebulletindetail.aspx?ebulletinid=294

Power Morcellation: What You Should Know

Morcellation has been in the news recently so we thought we would pass on some information provided by Judy Cohen, Outreach Coordinator, American Recall Center . 

Power Morcellation: What You Should Know

Practically everyone knows someone who has undergone a hysterectomy. Recently, however, a medical device commonly used for some hysterectomy procedures has come under scrutiny by the FDA. This device, a 'Power Morcellator', is used to cut fibroid tissue into smaller pieces for easier removal from the body. Power morcellators are deemed to be responsible for the spread of formerly undetected cancer cells throughout the abdominal cavity and pelvis of women. Shockingly, the mortality rate of women who have undergone accidental morcellation of a cancerous tumor is quite high with a life expectancy of only 24-36 months following the procedure.

The FDA has come to the conclusion that there is no known fully accurate and reliable method for preoperatively determining whether fibroids in the female may also contain a uterine sarcoma. Results of studies done on power morcellation were released in April. Based on those studies, the FDA states that approximately 1 in 350 women undergoing a hysterectomy or myomectomy for the treatment of fibroids likely has an undetected uterine cancer. Leiomyosarcoma (LMS), a particularly aggressive uterine sarcoma, has a poor prognosis which the power morcellator only exacerbates. If you or someone you know has had a procedure using this device, be sure to keep all follow-up appointments with your doctor!

On July 10th and 11th, the FDA met to discuss the inherent dangers and the possible future of morcellation procedures. A final decision is currently under discussion. Meanwhile, in late July, one of the largest manufacturers of power morcellators, Johnson & Johnson, issued a voluntary recall of the device. Determining the procedure to be too risky, they are in the process of removing all existing devices from the marketplace. The more awareness that can be raised about this dangerous device, the faster we can put an end to the spread of avoidable and deadly cancers in women.

Dee

Co-moderator #gyncsm chat