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

What's on your Mind? #gyncsm Open Mic Night

This month we are opening the discussion to topics our participants want to discuss.

What is on your mind?

Are you considering a PARP and want to know more? 
Are you interesting in taking part in a clinical trial but have questions? 
Do you want to know if others are experiencing Quality of Life (QOL) issues like you are?
Do you have questions about seeing a Genetic Counselor for genetic testing?  
Do you want to discuss the results of the Our Way Forward Survey? 
Do you want to discuss how to communicate with your health care team?
Did you see the latest research on obesity and ovarian cancer and wonder if it applies to you? 
If you are a health care provider, do you wonder how much information your patient wants to hear about their condition?

Join us on July 12th at 9pmET | 8pmCT | 6pmPT and bring your thoughts, questions and comments for our third "Open Mic" #gyncsm session.


Dee
Co-Founder #gyncsm Chat