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

Your Voice has Power- World Ovarian Cancer Day May 8, 2017

World Ovarian Cancer day is May 8, 2017. The theme of this year's day is Your Voice Has Power.

We can all spread the word and help others understand how ovarian cancer can affect women worldwide.

"Ovarian cancer is diagnosed annually in nearly a quarter of a million women globally, and is responsible for 140,000 deaths each year. Statistics show that just 45% of women with ovarian cancer are likely to survive for five years compared to up to 89% of women with breast cancer. "

In addition here are five key facts women throughout the world should know.
1. All women are at risk of ovarian cancer.
2. Awareness of the early warning signs of the disease could save lives.
3. Diagnosis at an early stage vastly improves a woman’s chance of survival.
4. Ovarian cancer is often diagnosed at a late stage.
5. Many women mistakenly believe the cervical smear test (Pap test) will detect ovarian cancer.

Source: World Ovarian Cancer Day website http://ovariancancerday.org/.

You may read our co-moderator Dee's story as well as other survivor stories on the World Ovarian Cancer website (http://ovariancancerday.org/personal-stories/dee/)

If you are on Twitter, help spread the word about World Ovarian Cancer Day. Tweet with the hashtags #WOCD #OvarianCancerDay to join the conversation.

Dee and Christina
Co-founders #gyncsm

Awareness and Advocacy - Sept Round-up

Awareness months are a wonderful opportunity to build momentum around a health cause. Here are lots of resources and information about the great things you can get involved with for Gynecologic Cancer Awareness Month and Ovarian Cancer Awareness Month. We'll add to this post as the month goes along. You can also check out our RESOURCES section for overall and cancer-specific organizations and resources that are helpful year-round.

Gynecologic Cancer Awareness Month

Foundation for Women's Cancer

• Campaign homepage: http://www.foundationforwomenscancer.org/gcam2016/ Note - Here you will find great graphics to share highlighting each of the main gyn cancers.
• SGO counterpart page: https://www.sgo.org/social-media/social-media-gcam/
• Main Hashtags: #EndWomensCancer #sharethepurplelove
• Other Hashtags: #gyncancer #GCAM

Cervivor (Cervical Cancer Awareness Month is January, so love seeing them join along)

• Main Hashtags: #gcam #gyncsm #preventcc 

National Cervical Cancer Coalition (Cervical Cancer Awareness Month is January, so love seeing them join along)

• Campaign homepage: http://www.nccc-online.org/gynecological-cancer-awareness-month/

UK Organizations:

• The Eve Appeal, Jo's Trust
• Main Hashtags: #GynaeMonth #knowyourbody

Virtual Events:

• #GCAM chat w/ NCCC - Mon 9/12 2pmET
• #gyncsm chat - Wed 9/14 9pmET, See RECAP

Places to Find Personal Stories:

• #gyncsm Community Blog Stories

Gynecologic and Ovarian Cancer Symptom Images to Share:

• https://www.pinterest.com/christinalizaso/gyn-cancer-symptom-awareness/

Ovarian Cancer Awareness Month

Presidential Proclamation - National Ovarian Cancer Awareness Month, 2016
http://go.wh.gov/ZkDRGY

Foundation for Women's Cancer

• Campaign homepage: http://www.foundationforwomenscancer.org/gcam2016/ Note - Here you will find great graphics to share for ovarian cancer.
• Main Hashtags: #TealTuesday #sharetheteallove

Ovarian Cancer Research Fund Alliance

• Partner Member Events: http://www.ovariancancer.org/2016/08/03/september-partner-member-events/
• Main Hashtag: #30daysofteal 

National Ovarian Cancer Coalition

• Campaign homepage: http://www.ovarian.org/knowovarian Note - has links to all their run/walks.
• Main Hashtags: #knowovarian

SHARE Cancer Support

• Main Hashtags: #TealTuesday #ovariancancer #gyncsm

Virtual Events:

• #WearTealDay - Fri 9/2, Annual event on the first Friday of September
• #OCAMChat - Tues 9/6 5:30pmET
• CancerCare Webinar on Medical Update on Ovarian Cancer - Wed 9/7 1:30pmET
• #HERchat w/ @beBRCAware @ShannonWestin - Thur 9/8 7pmET
• Ovarian101 Thunderclap - Sat 9/10, Join the campaign by 9/9 
• SHARE Webinar on Strategies for Long-Term Management of Recurrent Ovarian Cancer - Thur 9/15 12pmET
• SupportConnect Webinar on Clinical Trials and Ovarian Cancer - Thur 9/15 8pmET
• Ovarian Cancer SU2C Dream Team Update Webinar - Thur 9/22 6pmET

Places to Find Personal Stories:

• NOCC-Northern Virginia Chapter Faces of Hope

 

Hereditary Breast and Ovarian Cancer Week (9/25-10/1) and Previvor Day (9/28)

FORCE

• Event page: http://www.facingourrisk.org/get-involved/events/special-event.php

Christina Lizaso
co-founder #gyncsm

World Cancer Day 2016

Thursday, February 4, 2016 is World Cancer Day. The Union for International Cancer Control (UICC) has selected “We Can” and “I Can” as the theme of this year's day.

Here is some information from World Cancer Research Fund International on the global impact of three gynecologic cancers - cervical, ovarian and endometrial.

Ovarian Cancer

• 7th most common cancer in women worldwide
• 239,000 cases in 2012 worldwide
• 5 year survival rate varies from 30-50%
• In 2012 the rate of ovarian cancer was more than two times higher in Central and Eastern Europe compared with Eastern Asia.
• The 5-year prevalence of women globally living with ovarian cancer is 22.6 per 100,000.

Endometrial Cancer

• 6th most common cancer in women worldwide
• 320,000 cases in 2012 worldwide 
• 5-year survival rate of over 91%
• The 5-year prevalence of women globally living with endometrial cancer is 46.8 per 100,000 (estimated from incidence and observed survival by cancer and age group).

Cervical Cancer

• 4th most common cancer in women worldwide
• 528,000 cases in 2012 worldwide
• Highest incidence of cervical cancer was in Africa and in Latin America & Caribbean
• Women become susceptible to developing cervical cancer following HPV infection, but other environmental factors are required for the cancer to develop.

You can join the campaign to reduce the cancer burden worldwide by signing the declaration on the UICC site, take part in the 'Talking Hands' activity or use the hashtag #WorldCancerDay or #WeCanICan on social media. Learn more at: www.worldcancerday.org


Dee
#gyncsm co-moderator

Gyn Cancer Awareness Month - Spotlight Uterine and Endometrial Cancers September 2015 Chat

We celebrated our Second Anniversary as a community and chat this evening. We were happy to see some familiar faces as well as a few new participants.

This month we discussed Gyn Cancer Awareness Month and we also spotlighted Uterine and Endometrial cancers. We were so pleased to have Lynne Braden, uterine cancer survivor and #GynCAN founder tweeting as @GynCAN join us as well as our own Drs. Boulay, Dizon, Markham and Becker-Schutte.

If you missed this lively chat you may read the transcript here. We had 48 participants and 1,494,578 impressions with 614 tweets in the hour. Analytics may be found here.

Our topic questions and a few responses:

T1: Let’s start with Gyn Cancer Awareness Month #GCAM. What do you wish others knew about your gyn cancer? What are some key points?

T1: That far more suffer from it that we realize. Talking about anything GYN in public is still so hard for many people. #gyncsm

— GynCAN - #GynCAN (@GynCAN) September 10, 2015

#gyncsm T1 we try to make women aware of these symptoms pic.twitter.com/JrJcItACoV

— Cervical Screening (@CervicalScreen1) September 10, 2015

T2: Share ways you are raising awareness during #GCAM, everything small to big. Let's replicate great ideas and amplify the message!

T2: Working with @WIOvarianCancer @Aurora_Health to spread the word about ovarian cancer in our community #gyncsm

— Elizabeth Dickson (@edicksonMD) September 10, 2015

T2 wearing apparel and jewelry identifying uterine cancer, sharing my personal experiences via fb and instagram via quotes and such #gyncsm

— Gail Rose (@rose_mzrozee) September 10, 2015

T3: What are the #uterinecancer #endometrialcancer risks and symptoms? Survivors, what symptoms did you experience? How diagnosed?

T3: We need to think of gyn symptoms like we think of a breast lump: Odds are it's nothing, but MAKE SURE IT'S NOT CANCER. #gyncsm

— Robin Martinez (@RobinSmrtPtient) September 10, 2015

T4: What treatments are used for #uterinecancer #endometrialcancer ? Which side effects have the biggest impact?

T4 Almost all uterine and endometrial cancer is treated surgically. WE use minimally invasive approach (robots) to speed recovery #gyncsm

— Rick Boulay,MD (@journeycancer) September 10, 2015

T5: Why do you advocate for yourself and others? How has your life changed because of a gyn cancer diagnosis?

T5 witnessing ovca pt experiences as an oncology RN made me want to do more, not just give chemo. QoL needed!!! #gyncsm

— Alene Nitzky Ph.D RN (@AleneGoneBad) September 10, 2015

T5: Because survivor sisters are now my friends! The need for awareness & increased funding is so great. #gyncsm

— GynCAN - #GynCAN (@GynCAN) September 10, 2015

Be sure to scroll down for our list of resources shared during the chat. 

Remember you may continue this month's discussion on Smart Patients. (https://www.smartpatients.com/gyncsm) 

We hope you can join us on Wednesday, October 14, 2015 at 9pmET Topic: Open Mic - Bring your questions/ thoughts. We look forward to seeing you then. 

Dee

#gyncsm Co-Founder

Resources 

Ovarian Cancer Screening http://t.co/jzRJuPWQJx

GYN cancer symptoms via @CDCgov http://t.co/0xRGEPjWMj

@FoundationWomen cancer fact sheet on heredity and Gyn Cancers http://t.co/2DMzuDjcSl

PSA created by @drdonsdizon and @mghcancercenter  
https://audioboom.com/boos/3555368-ovarian-cancer-awareness-month

Nobody Has Cancer Blog: http://www.nobodyhasovariancancer.blogspot.com/

Are You at Risk for Uterine or Endometrial Cancer @GYNCancer http://t.co/4boVMlfzIL

Risk Factor Chart http://www.gyncan.com/p/know-your-risk-factors.html

Peach Outreach http://peachoutreach.com/

SGO: Uterine Cancer: Symptoms | SGO https://t.co/IsdqFRzuLW

Medscape Article ( free to join)  In Endometrial Cancer, Lymphadenectomy Down Since 2007
http://www.medscape.com/viewarticle/850658

@theNCI : uterine overview http://t.co/mJhfJIMHTd  treatment info: http://t.co/uDjQ65QedI

National Race to End Women's Cancer http://www.endwomenscancer.org/faf/home/default.asp?ievent=1131900

#gyncsm TIL: Today I Learned thoughts: http://t.co/eX9UYFlJGK