OC awareness month #18 - Lynch Syndrome

While at the ASCO meeting in June I spent some time talking to the Myriad representatives. Myriad is the company that does the genetic testing for gene mutations, deletions and additions. I asked if the test used today is any different from the one they used to test my blood  6 years ago. There response was that they would test for LYNCH SYNDROME.

I knew Lynch syndrome associated with colorectal cancer but I wasn't sure how strong a connection there was between Lynch Syndrome and  ovarian cancer.

"Lynch Syndrome is also known as hereditary non-polyposis colorectal cancer (HNPCC), is a type of inherited cancer of the digestive tract. Lynch syndrome increases a woman's risk of ovarian and uterine cancer. It is caused by mutations in several different genes. Lynch syndrome also increases the risk of colorectal cancer, as well as cancers of thestomach, small intestine, liver, bile duct, urinary tract, the brain and central nervous system, and possibly breast cancer. http://www.cancer.net/all-about-cancer/genetics/genetics-ovarian-cancer
"
Mutations in the MLH1 or MSH2, MSH6 or PMS2 or EPCAM genes  are associated with Lynch Syndrome. Families with Lynch syndrome have two or more members who have colorectal, endometrial , ovarian or other cancer.

For more information about the test for Lynch Syndrome see this page.

Here is some interesting research on the Lynch Syndrome Ovarian Cancer link.

* Ovarian cancer linked to Lynch syndrome typically presents as early-onset, non-serous epithelial tumors.

*Routine Lynch Syndrome Screening Varies at U.S. Cancer Centers

* The clinical features of ovarian cancer in hereditary nonpolyposis colorectal cancer.



Dee
Every Day is a Blessing!

OC awareness #17- Even 8 year old girls can can have OC

A few years ago at an ovarian cancer walk in Hamilton, NJ,  I met a nine year old girl who had been diagnosed with ovarian cancer. It is rare and tends to happen in the germ cells but it does happen. It sadden me to read about such young children being diagnosed with the disease.

Here is a powerful story about a young lady from Connecticut and her experience with the disease.  Girl 8 Survives Ovarian Cancer.  

Thank you Natalie Cosman's and her parents for allowing her to share her story.

Dee
Every Day is a Blessing!

OC Awareness #15- Remembering and Honoring Women of Teal

Over the past 7 years I have met many women diagnosed with ovarian and other gynecologic cancers . Some I have known for years prior to their diagnosis, some I met at conferences or through volunteer organizations. Some I got to know through talking to their caregivers. Some live in NJ , some in other states and some across the Atlantic in the UK.
Today I remember those women who are no longer with us and honor those who walk beside me on this journey. Thank you ladies for your support , advice , love and hugs through the years.


IN MEMORY OF :
Mary Jean Tonkovich- NJ
Shirley Harris - NJ, Endometrial
Ann Bugdal -NJ,  Endometrial
Nicole Christison- NJ
Mary Ellen Csehi - NJ, Endometrial
Monica Orloff- NJ
Jeanne Moran - NJ
Jo McGowran - UK
Gaynor Hall- UK
Sarah Feather
Patty Higgins
Janet Rigdon
Jayne Armstrong- CA
Ellen Santaniello- NJ
Courtney Clifford- Ohio
Denise Carter- NJ
Mary Slattery- NJ
Lisa Niebert- NJ
Fran- NJ
Lyn Rossi- NJ
Diane Waller
Gail McNeil- NJ
Sharon Morris- NJ
Cindy Owens- Va
Ann Hall- NJ

IN HONOR OF :
Pam F - NJ
Carole F - NJ
Lois M - NJ
Maria C - NJ 
Shari - NJ 
Jean - NJ
Ann- NJ
Karin - NY
Rita Kay - NJ
Betsy- NJ
Barbara- NJ 
Kendal- Ca
Deirdre -NJ
Sue - AL
Sandy
Karen - NJ
Karen - OR
Andrea -NY
Joan
Sandhy - UK
Victoria
Maggie
Michelle - Pa
Emily
MaryAnne - NJ
Kia - FL
Kimberly- DE
Rachel- UK
Tracey
Claire
Stacy
Natalie
Rebecca
Alicia
Laurel
Emily
Teresa
Heather

( I apologize if I missed anyone.)  
Dee
Every Day is a Blessing! I have been blessed to have these women in my life. 

OC Awareness Month #14 - Inside Knowledge...

The CDC ( Centers for Disease Control)  has done an outstanding job this year raising awareness of Women's Cancers during Gynecologic Cancer Awareness Month. They have developed the program Inside Knowledge: Get the Facts About Gynecologic Cancer. The program concentrates on the 5 main gynecologic cancers- ovarian, uterine, cervical, vaginal and vulvar.

I am so happy to see that the spokesperson for the PSA is Jenny Allen. I met Jenny a number of times and she is a great performer ( I Got Sick Then I Got Better), writer, mother and Ovarian Cancer survivor.

I urge you to check out the CDC page which includes

Fact Sheets, Symptom Diary Wallet Cards, and Posters in both English and Spanish. 

Help spread the word about gynecologic cancers. Thank You. 

Dee

Every Day is a Blessing!

OC Awareness # 13 - The Impact of OC

I realized that I did not post a #13 for ovarian cancer awareness month. Here it is.

I love this simple yet affective method of seeing the impact ovarian cancer has on the lives of women in the United States.

Thank you to whyteal (http://www.whyteal.org/awareness/)  and NOCC ( http://ovarian.org/)  of this video. 

Dee

Every Day is a Blessing! 

OC Awareness #12 - OC Organizations in NJ

Do you know someone with ovarian cancer?  Do you want to help raise awareness, funds for research or provide help for women fighting ovarian cancer? There are a number of organizations in NJ that you can volunteer with or support monetarily.

GRACEful Hope
Kaleidoscope of Hope Foundation
Janice Lopez Ovarian Cancer Foundation 
Mary Mazanec Ovarian Cancer Foundation
NOCC - Northern NJ
NOCC - Delaware Valley
The Teal Tea Foundation
Teal Wings of Hope Foundation 


I have personally worked with many of these organizations or personally know many of the founders / directors.  Each and every one of them has done outstanding work to either raise awareness, donate millions of dollars to research or have supported women who need help with transportation, bill paying , pharmaceuticals etc.You can help those fighting this disease  and do it close to home.

Dee
Every Day is a Blessing!

OC Awareness #11- Task Force Recommendation

Just yesterday the US Preventative Services Task Force released its recommendation regarding ovarian cancer screening in the general population.

The recommendation is for adult women and does not apply to women who are at risk for the disease ( genetic mutation) or women already diagnosed with the disease.

"The Task force recommends against screening women for the disease. "

This recommendation was made because screening using CA-125 and ultrasound did not have any benefit (reduce mortality)  and if fact those tests could lead to harm (unnecessary surgery) .

The task forced used three large trials( including the Prostate, Lung and  Ovarian Cancer Screening Study) to reach their conclusion . A discussion of the test can be found on the USPSTF website here and the consumer fact sheet ( pdf)  can be found on their website.


Here is a good article to read for a very complete explanation of the studies behind the recommendation.
http://annals.org/article.aspx?articleid=1357339


Dee
Every Day is a Blessing!