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

Hereditary Breast and Ovarian Cancer Week

[posted updated 9/2016, 9/2017, 9/2018]

The #gyncsm community has chatted about gynecologic cancer risks, the genetics of cancer (Genetics and Personalized Medicine), Genetic Counselors and Understanding Gyn Cancer Risk and Hereditary vs Somatic Mutations. HBOC week gives us another opportunity to share resources and information on hereditary ovarian and breast cancers.

About 15% of the ovarian cancers diagnosed are due to germline (inherited and passed on to offspring) mutations in the BRCA1 and BRCA2 genes. Having these mutations increases the risk of ovarian cancer by 15-50%. “Nearly one-third of women with hereditary ovarian carcinoma have no close relatives with cancer, and 35% of women with hereditary ovarian carcinoma are older than 60 years at diagnosis”(NCI). 

The Society of Gynecologic Oncology released a Clinical Practice statement in 2014 stating that all women diagnosed with ovarian, tubal and primary peritoneal cancer regardless of age or family history should receive counseling and be offered a genetic test. (https://www.sgo.org/clinical-practice/guidelines/genetic-testing-for-ovarian-cancer/)

F.O.R.C.E. (Facing Our Risk of Cancer Empowered) has played a crucial role in raising awareness, providing information and supporting research into hereditary breast and ovarian cancers. "The goal of HBOC Week and Previvor Day is to raise awareness about hereditary cancer. HBOC Week marks the transition between National Ovarian Cancer Awareness Month and National Breast Cancer Awareness Month and recognizes anyone affected by hereditary breast or ovarian cancer, including women and men with BRCA mutations, people with a family history of cancer, breast and ovarian cancer survivors, and previvors, individuals who carry a strong predisposition to cancer but have not developed the disease."

We hope you find these resources helpful. 


Hereditary Cancer Resources:
Bright Pink
www.bebrightpink.org
F.O.R.C.E. (Facing Our Risk of Cancer Empowered)
http://www.facingourrisk.org/
Sharsheret
http://www.sharsheret.org/
BRCA Mutation
http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA
Lynch syndrome
http://www.cancer.net/cancer-types/lynch-syndrome
Cowden syndrome
http://www.cancer.net/cancer-types/cowden-syndrome
Li-Fraumeni syndrome
https://www.lfsassociation.org/what-is-lfs/
Peutz-Jeghers syndrome
https://www.cancer.net/cancer-types/peutz-jeghers-syndrome



Genetics: 
National Society of Genetics Counselors http://nsgc.org/
Find a Counselor Tool: http://nsgc.org/p/cm/ld/fid=164


Dee
#gyncsm Co-Founder 

If Only I Knew - September is Gynecologic Cancer Awareness Month

Ten years ago I didn’t know very much about the color teal or ovarian cancer. I did go for an annual Pap Test but that was the extent of my knowledge of gynecologic cancers. Since my sister had been diagnosed with breast cancer at the age of 42, I knew much more about pink and breast cancer. 

Then I was diagnosed with stage III ovarian cancer. At first I was just too busy getting well to even think about the fact that I could do something about being clueless about gynecologic cancers. But I finished chemotherapy, my hair grew in and I felt better. In 2006 the consensus statement on ovarian cancer symptoms was published. Later that year when my gynecologic oncologist suggested I contact a local ovarian cancer foundation and get involved in raising awareness, I was finally ready. That September was the first time I told my story. I talked about the symptoms of ovarian cancer with other women and handed out symptom cards. It was also in September of that year that I joined with another family from my town to hang teal ribbons on trees to raise awareness of ovarian cancer.

Awareness of gynecologic cancers and ovarian cancer in particular has increased in the past 10 years but we have more work to do. There are still women, family members and health care providers who need to be educated about the symptoms of gynecologic cancers, HPV, risk factors, and the need for research to better understand the diseases and to find cures. Awareness efforts reach their peak every September during Gynecologic Cancer Awareness Month (GCAM) . If you want to help raise awareness you can wear teal, paint your toes teal, hang ribbons, participate in walk/runs or chats and share symptoms via social media or the handy symptom cards offered by several awareness organizations. These are just a few of the ways you can get involved and spread the knowledge which all women need to know about gynecologic cancers.

Here are some online resources for GCAM that #gyncsm would like to share with you.

  

Gynecologic Cancer:

#gyncsm Chat – September 9, 2015 at 9pm EST Topic: Gyn Cancer Awareness Month with a Spotlight on Uterine/Endometrial Cancer (gyncsm.blogspot.com)

Globethon to End Women’s Cancer – worldwide events http://globeathon.com/events/

GynCan- Gynecologic Cancer Awareness Network - http://www.gyncan.com/

Blogger/Social Media Challenge and Walk/Run 100 Miles in September

Foundation for Women’s Cancer  http://www.foundationforwomenscancer.org/, Awareness Month Role of Hereditary Cancer Fact Sheet : http://www.foundationforwomenscancer.org/wp-content/uploads/GCAM-2015-Fact-Sheet5.pdf

Ovarian Cancer :

Ovarian Cancer National Alliance (OCNA) http://www.ovariancancer.org/

#30Days of Teal

Check their Partner Member Page links to partner member websites and events.

National Ovarian Cancer Coalition (NOCC) - http://www.ovarian.org/ Check their website for local walks http://ovarian.org/upcoming_walks.php

Ovarian Cancer Research Fund (OCRF) http://www.ocrf.org/

Upcoming event can be found here.  http://www.ocrf.org/news/events

Wear Teal Day is Friday, September 4, 2015.

We would love to hear about the awareness activities you will be participating in during September. Please tell us in the comment section of this page or share it with us (@gyncsm) on twitter. 

Dee
Co-Founder and Co-Moderator #gyncsm community

World Ovarian Cancer Day - May 8, 2015

The #gyncsm community is pleased to once again partner with the cause World Ovarian Cancer Day (WOCD).  WOCD will be held this year on May 8, 2015. This year’s theme is “Celebrate Women”.

WOCD, was first held in 2013. It unites organizations from around the world in their efforts to raise awareness of ovarian cancer. The reasons a special day is crucial for the effort include the lack of an early detection test for the disease, symptoms similar to less serious illnesses, and high mortality rates.  

Many of our followers know the stats for the US. An estimated 22,000 women will be diagnosed with ovarian cancer and 14,000 women’s lives lost each year. (http://seer.cancer.gov/statfacts/html/ovary.html) 

Do you know the global impact?

A quarter of a million women are diagnosed worldwide with ovarian cancer and the disease is responsible for 140,000 deaths each year. While 89% of the women diagnosed with breast cancer survive five years only 45% of women diagnosed with ovarian cancer survive that long. 

What can you do?

Celebrate the women in your life by visiting the www.ovariancancerday.org.  While on the site you can pledge your support of WOCD and share information about the disease and the Day with five of your friends.  Read the personal stories of women from around the world at http://ovariancancerday.org/personal-stories/

Follow WOCD on facebook at https://www.facebook.com/WorldOvarianCancerDay), 

Follow WOCD on Twitter https://twitter.com/OvarianCancerDY and share tweets such as these:

• By signing the pledge, you join the global movement to raise awareness of ovarian cancer on May 8 http://bit.ly/WOCDpledge  #WOCD 
• May 8th is #WOCD awareness and education for #ovca . Visit ovariancancerday.org and build one voice for every woman. #UnbreakableBond
• Learn the facts about #ovca - raise awareness of the disease for women everywhere. Visit ovariancancerday.org  #WOCD #UnbreakableBond

Thanks for joining our efforts to raise awareness of ovarian cancer worldwide and don't forget to wear teal on May 8^th.

Dee

#gyncsm co-founder

She Has Lynch Syndrome

March is Colorectal Cancer Awareness month. Lynch syndrome also called hereditary nonpolyposis colorectal cancer (HNPCC) is associated with colorectal cancer but many are unaware that the syndrome is also associated with endometrial cancer and ovarian cancer. Women with Lynch syndrome have a 21-71% risk of endometrial cancer and a 3-14 % risk of ovarian cancer. Additional information regarding surveillance, risk reducing surgery, etc. may be found on the Up To Date website at: http://www.uptodate.com/contents/endometrial-and-ovarian-cancer-screening-and-prevention-in-women-with-lynch-syndrome-hereditary-nonpolyposis-colorectal-cancer.

Georgia Hurst, who was diagnosed with Lynch syndrome in 2011, is an advocate, daughter and sister of colon cancer survivors. She choose to have risk reducing surgery and following that experience started writing the I Have Lynch Syndrome website. The website's mission is "to address the possible plethora of emotional implications of a Lynch diagnosis and to encourage those that may at be at high risk to get genetically tested." We are happy to share a blog post written by Georgia for her blog in June 2013.

Christina and I would like to thank Georgia for her support of the #gyncsm community.

How to be happy after a Lynch diagnosis

I got slapped with my Lynch diagnosis on May 17, 2011. I had my radical hysterectomy on June 10, 2011 and spent the last couple years trying to figure out how to reconcile living with this emotional aspects of this genetic monster. I had to undergo lots of therapy, meds, acupuncture, meditation, books, spending time with friends, exercising, and participating in life affirming activities in order to start feeling better.

Lynch is not something you can only fret about during your annual screenings; it’s something that you must be mindful of every day. Most things I do are for my betterment, to improve or sustain my good health, and if it’s not good for me physically or emotionally, then it doesn’t get to be in my life.
Here is my list of things to do to live a happy life following a Lynch diagnosis.

1. Decide what prophylactic measures you will take/or not and then deal with that. I felt the need to take control immediately following my diagnosis and scheduled my hysterectomy. Learn all you can about Lynch; become your own health advocate and get screened religiously.

2.  Think about most things that you put into your mouth. Will it nourish you or eventually end up destroying you? Do you need to alter your diet and include more fruits and veggies and less animal products? Your diet does play a role in cancer’s development. Drink more green smoothies and be sure to incorporate things such as kale, spinach, green apples, green tea, and chia seeds into your diet. Let thy food be thy medicine!

3. Workout at least five days a week. I’ve been running for years but now I need it more than ever; first for the endorphins, second because I want to be as trim and fit as possible. Lift weights –  for me, physical strength holds implications for my mental strength. You must make exercise a priority in your life. Period.

4. Spend time with people who teach you, nourish you, love you, and are willing to listen to you. Get rid of the toxic people in your life – you have enough crap to deal with – eliminate them and make room for more positive people in your life.

5. Spend time cultivating your spirituality. I meditate – a lot, usually for an hour. Pray, meditate, whatever it is that you do and do it more frequently. Talk to yourself and tell yourself that you’re healthy, strong, and that you will not allow for cancer to manifest itself into your body. Breathe deeply. Repeat.

6. Read books about death and happiness. It’s amazing what profound words some books have written in them. I’m partial to Buddhist philosophy; it’s helped me immensely with dealing with my death anxiety. Also, reading about other people’s life issues provides you with perspective on your own life and makes you realize how fortunate you are in many ways.

7. Spend time in nature. Go for a walk, go to the beach, garden, spend more time outside. It works wonders for the soul.

8. Do at least one thing that makes you feel good every day. Period.

9. Cater to your inner child. Do things you’ve always wanted to do and keep putting off. I recently built an eight foot teepee in my basement – I’ve always wanted one since I was a kid. Are you going to wait until you’re sick and old to do them? Do them now.

10. Express gratitude, every day. Count the things that you’re grateful for and remember there is someone always worse off than you.

11. Limit your time on FB Lynch and cancer platforms. They can be highly depressing and cause your optimism regarding your own health to wane. You know you have Lynch and can take preventative measures to fight it; many of those who are suffering from cancer did not know they had Lynch until it was too late. Keep that in mind when reading their stories. You’re one of the lucky ones!

12. Make your home your sanctuary; I have peaceful looking Buddhas about the house, upbeat music playing, candles burning, and flowers in my home. It’s hard to be depressed in a lovely, calm environment.

13. Have something to take care of every day. Adopt a dog or cat from the shelter. Get a fish. Get some plants. Having living things that need to be cared for by you gives you more purpose.

14.  Leave your mark and/or create something. Do something that makes you feel as though you’ve made a difference. You don’t need to win the Noble Peace Prize, but do something you can be proud of; for me it’s been this blog and my advocacy work.

15. Connect with others who have Lynch and are not sick. Just remember, you’re not alone. If you can’t find anyone else, zap me an email, I’d be happy to talk to you.

16. Stop worrying about others in your family and whether or not they’ll be screened. You cannot control anyone but yourself. All you can do is set an example for them.

17. Be happy; if you’re doing every thing you can, exhausting all of your options, getting screened, and taking care of yourself, you should gain some solace from all of this.


And she’s off.
Namaste.
Georgia

Dee
#gyncsm Co-moderator

Additional Rare Disease Day Information

Rare Disease Day® is February 28th! 
We have already provided some information about Rare Disease Day® in a recent blog post.   But we wanted to share with you two additional Rare Disease Day chats that will be occurring this week along with some twitter handles to watch. Thanks again to Stephanie Fischer (@SDFatPhRMA) for providing this important information. 

Wednesday, February 25^th, 2:30-3:30pm ET: NIH will host a tweetchat to raise awareness of rare disease and promote Rare Disease Day at NIH. NIH Director Dr. Francis Collins will participate as will Dr. John Ferguson, Medical Consultant, Office of Rare Disease Research in the National Center for Advancing Translational Sciences (NCATS).

·         Hashtag: #NIHchat
·         Handles to watch: @NIH, @NIHDirector and @NCATS_NIH_GOV

There is also a    Rare Disease Day at the National Institutes of Health: February 27^th in Bethesda, MD – and available by WEBCAST.

Thursday, February 26^th, 1-2pm ET: The Center for Jewish Genetics and Global Genes will host a tweetchat to raise awareness of rare diseases.

·         Hashtag: #RareDiseaseChat

·         Handles to watch: @JewishGenetics, @GlobalGenes & @BYMRKH

Here are some Rare Disease twitter handles to watch this week:
·         NORD: @RareDiseases
·         Global Genes: @GlobalGenes
·         Rare Disease Day US: @RareDayUS
·         World Rare Disease Day: @RareDiseaseDay
·         Rare Diseases Europe: @eurordis
·         Coordination of Rare Diseases at Sanford (hosting an event on Friday): @SanfordCoRDS

Dee
Every Day is a Blessing! 

Day by Day , Hand in Hand : Rare Disease Day February 28, 2015

The #gyncsm community has once again joined forces with rare disease patients and health care advocates in the U.S. and around the world for Rare Disease Day® on February 28th.  Rare Disease Day is an annual awareness day dedicated to elevating public understanding of rare diseases and calling attention to the special challenges faced by patients and the community.

In the United States, a disease is considered rare if it is believed to affect fewer than 200,000 Americans. Nearly 1 in 10 Americans live with a rare disease—affecting 30 million people—and two-thirds of these patients are children. There are more than 7,000 rare diseases and only approximately 450 FDA-approved medical treatments. 

Do you know the gynecologic cancers that are considered rare diseases by the NIH's Office of Rare Diseases Research? They are:

Ovarian

Uterine,

Endometrial,

Fallopian tube,

GTD (Gestational Trophoblastic Disease),

Vaginal and

Vulvar cancers

There are a number of tweet chats that are being held this week that are discussing rare diseases. Feel free to join in the discussions. (Thank you Stephanie Fischer, @SDFatPhRMA, for compiling these.)

·         Tuesday, February 17^th, at 1-2pm ET: NORD & Dr. Richard Besser of ABC News are co-hosting a chat on Conquering Rare Disease.

o   Hashtag: #abcDRBchat

o   Handles to watch: @RareDiseases, @RareDayUS, @abcdrbchat & @DrRichardBesser

o    Learn more: http://rarediseaseday.us/events/join-nord-and-abc-news-for-a-rare-disease-day-tweetchat/

·         Tuesday, February 17^th, 8-9pm ET: Treatment Diaries and Give Rare will co-host a tweetchat on rare disease collaboration.

o   Hashtag: #TreatDiariesChat

o   Handles to watch: @treatdiaries, @giverare & @keeganj

·         Wednesday, February 18^th at 1pm ET: Isabel Jordan will moderate a tweetchat on rare disease for the Health Care Social Media Canada community.

o   Hashtag: #hcsmca

o   Handles to watch: @seastarbatita & @hcsmca

o   Learn more: https://cyhealthcommunications.wordpress.com/2015/02/15/rare-disease-day-making-connections-online-offline/

·         Wednesday, February 18^th, at 8pm ET: The Massachusetts Biotechnology Council & PhRMA will cohost a tweetchat on the State of Rare Disease Research.

o   Hashtag: #Impact2020

o   Handles to watc: @MassBio, @SDFatPhRMA, @AARDATweets & @NFincNE

o   Learn more: http://www.massbio.org/events/calendar/3072-impact_2020_twitter_chat_rare_disease_research/event_detail

·         Thursday, February 19^th, at 2pm ET: Global Genes & WEGO Health will host a World Rare Disease Day Tweetchat.

o   Hashtags: #RARETalk & #hachat

o   Handles to watch: @GlobalGenes & @wegohealth
o   Learn more: http://globalgenes.org/raredaily/win-prizes-get-the-facts-and-tell-us-how-you-celebrate-world-rare-disease-day-during-our-tweetchat-with-wego-health-on-219/

Rare Disease Day takes place every year on the last day of February (February 28 or February 29 in a leap year)—the rarest date on the calendar—to underscore the nature of rare diseases and what patients face.  It was established in Europe in 2008 by EURORDIS, the organization representing rare disease patients in Europe. Rare Disease Day is sponsored in the U.S. by the National Organization for Rare Disorders (NORD)®, a leading independent, non-profit organization committed to the identification, treatment, and cure of rare diseases.

Watch this Rare Disease 2015 video

For more information about Rare Disease Day in the U.S., go to www.rarediseaseday.us.  For information about global activities, go to www.rarediseaseday.org).  To search for information about rare diseases, visit NORD’s website, www.rarediseases.org.

Dee

Co-moderator