Wednesday, September 30, 2015

My Women of Teal

Over the past ten years I have met many women diagnosed with ovarian cancer as well as other gynecologic cancers. Some of these women I interacted with in real life - at events, support groups and through ovarian cancer awareness organizations.  Other women I got to know through online groups - Facebook, Inspire or Smart Patients. On this the last day of Gynecologic Cancer Awareness month I write this post to honor those diagnosed as well as to remember the women whose lives were lost to a gynecologic cancer. These women have touched my life. 

In Memory of Women of Teal
Jeanne Burton -NJ, endometrial
Linda Juarez - NJ
Joanie Triestain
Heidi Rogol- NJ
Stella Bentivenga- NJ
Colette Fitzpatrick- UK
Shari R. Widmayer - NJ
Kimberly MacDonald- DE
Teresa Whittle - UK
Grace Rocha - NJ
Erika Rocha - NJ
Dietlind Mayer Lawrence- Michigan
Deirdre Berry, NJ
Maggie - KS
Karen Koop Gregorovic- NJ
Carolie Byng- UK
Laurel Phillips- Texas
Pam Favocci- Wall, NJ
Rita Kay Thomas- Piscataway, NJ
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, Michigan
Gail McNeil- NJ
Sharon Morris- NJ
Cindy Owens- Va
Ann Hall- NJ

In Honor of Survivors of Gynecological Cancer

Carole F
Lois M
Maria C

...too many lives impacted by this disease.

Every Day is a Blessing!

Tuesday, September 29, 2015

So Many Hashtags

Christina,co-moderator of #gyncsm chat, and I were discussing all the hashtags used during gynecologic cancer awareness month. Christina had compiled a pretty extensive list which I added 7 hashtags too.

Here is our list so far:

#30daysofteal (OCNA)
#actonfacts (@bebrightpink)





#shareitseptember (OCRF)

#takeactionnotchances (NOCC)
#turnthetownteal (Turn the Towns Teal)


Did we leave any out? Please let us know. 
Wouldn't it be great if we could unite behind one or two hashtags for next year? 

Every Day is a Blessing!

Monday, September 28, 2015

A Great Way to Learn

If you have never been to an Ovarian Cancer Survivors Course given by the Foundation for Women's Cancer then you have missed out on a great opportunity to learn the latest about ovarian cancer - what we know about the disease, the lastest and best treatments and how to take care of yourself through all stages of the disease. I have been to three of these courses in the past 10 years, most recently on Sept 16th in Morristown, NJ. 

About 75 people attended the  course which was held at the Carol G Simon Cancer Center at Morristown Medical Center. There were survivors, caregivers, family, social workers and a number of ovarian cancer organizations in the audience. I was happy to see friends and fellow survivors manning the information tables of the Kaleidoscope of Hope Foundation , the NJ chapter of the NOCC, SHARE and Cancer Support Community.

After a welcome by Dr Daniel Tobias, Director of the Woman's Cancer Center, and listening to his patient, Theresa,  discussed how she dealt with her diagnosis, the Course began.

Dr Ilana Cass - Ovarian Cancer:Is Progress Being Made
Dr Allison Wagreich -Genetic Risk and Prevention of Ovarian Cancer 

Nana Tchabo -Clinical Trials and New Treatments

Dr Mark Einstein- The Importance of Being Treated by a Gynecologic Oncologists (l) , Dr Micheal Pearl - Supportive Care the Women with Cancer (center) and Dr Daniel Tobias during the question and answer period. 
Just a few of the important points shared during the Course :
  • Surgery by gynecologic oncologists  who do large numbers of patients can improve survival.
  • Neoadjuvant chemotherapy is not inferior to primary debulking surgery.
  • The Cancer Genome Atlas  has provided information on genes responsible for OC.
  • Exercise can improve quality of life which improves survival.
  • Familial cancer syndromes include BRCA1,2 and Lynch Syndrome.
  • 3-7% of the women with the BRCA mutations undergoing Risk Reducing Surgery were found to have cancer in their tissue.
  • Clinical trials are NOT the last resort. 
  • Making progress against cancer is dependent on clinical trials
  • "Palliative Care is appropriate at any time during management of a serious illness." 
  • Palliative Care is beneficial, improves survival and reduces cost.  

Check for future courses here.

Every Day is a Blessing! Blessed that the Foundation for Women's Cancer mission is to educate survivors and caregivers.

Sunday, September 27, 2015

Awareness Campaigns

There are many local and national organizations that are helping to raise awareness this month and every month. Here are some examples.


Share this poster as a way to raise awareness. 
Go to the website ( , print out the poster and share it.

Turn The Towns Teal®

Hanging teal ribbons on trees and post signs in towns across this country. 
Photo from Turn the Towns Teal website.
I love seeing ribbons as I drive around NJ. Check out their website for more information and put it on your calendar as something to do next year!

In support of Turn The Towns Teal® , Folonari wine and Frederick Wildman and Sons will donate $10,000 to Turn The Towns Teal® for the first 10,000 selfies of people wearing teal on social media that are tagged with #turnmyselfieteal  . See for more information. 

Teal Toes

This campaign in which women ( and some men and even pets) paint their toe nails TEAL was founded by Carey Elizabeth Fitzmaurice (1968- 20015).  It is the perfect way to start a conversation about ovarian cancer. I've painted my toes TEAL every September since hearing about it.

Do you know of other unique or fun ways to raise awareness of a gynecologic cancer?
Please let me know and I will add to this page.

Every Day is a Blessing!

Saturday, September 26, 2015

"It's about your loved ones too" Cote De Pablo

For the past few years the CDC has been raising awareness of gynecologic cancers during Gynecologic Cancer Awareness month. They have done this through print ads and  public service announcements on the radio and TV. This year's PSA is Cote de Pablo speaking about cervical cancer and getting tested.

There are symptoms for gynecologic cancers which the CDC highlights in this year's PSA "Are you Listening" .

Every Day is a Blessing!

Friday, September 25, 2015

50 States of Teal

In 50 States of Teal: Ovarian Cancer Care Across America OCNA has evaluated the performance of each state in the US in 10 areas of ovarian cancer care. The metrics include prevention, treatment, survivorship,  and end-of-life care.

New Jersey scored 8 out of 10 and better than 42 other states.

For the complete report on NJ please visit 

Every Day is a Blessing! 

Thursday, September 24, 2015

An Introduction to Genetics and Ovarian Cancer

When I was diagnosed with ovarian cancer I decided to learn as much as I could about the disease. While I was in treatment I was offered genetic testing for BRCA1 and 2 which I accepted. Our knowledge about the genetics of ovarian cancer has grown tremendously over the past ten years.

Let's start with this basic video from the NCI on genetics and cancer. 

Now let's talk about ovarian cancer in particular. 

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 remaining ovarian cancers are due to what we call sporadic or somatic mutations. 

Following the BRCA mutations the next inherited syndrome that leads to ovarian cancer is Lynch Syndrome.  Mutations in the MLH1, MSH2, MSH6, PMS2 and EPCAM genes are linked to Lynch Syndrome.  Women who have Lynch syndrome have an estimated 9-12 % lifetime risk for developing ovarian cancer. (

In June 2011, the The Cancer Genome Atlas (TCGA) Research Network issued the results of whole-exome sequencing of ovarian cancer tumors. They examinesd the protein-coding regions of the genome, of 316 ovarian cancer tumors. 

The study found :

21 percent of the tumors studied showed mutations in BRCA1 and BRCA2 

six other statistically recurrently mutated genes: RB1, NF1, FAT3, CSMD3, GABRA6 and CDK12. CDK12 is involved in RNA splicing regulation 

96% of ovarian cancers had a T53 mutation. T53 controls a tumor suppressor protein that stops cancer from forming

108 genes were associated with poor survival

85 genes were associated with better survival

68 genes that could be targeted by existing Food and Drug Administration-approved or experimental therapeutic compounds 

Four related subtypes of ovarian cancer based on the patterns of DNA methylation—a chemical reaction in which a small molecule called a methyl group is added to DNA, changing the activity of individual genes. 

The SGO 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 offered a genetic test. ( ) Knowing a women has a BRCA mutation may allow her to receive PARP inhibitor treatment . Olaparib was recently approved by the FDA to treat women with recurrent ovarian cancer. 

In August  ASCO issued an updated policy statement on genetic and genomic testing. (

The more researchers understand the genetics of ovarian cancer the better they can  develop drugs to treat specific mutations and the more personalized women's treatment can become. 

Every Day is a Blessing! 

Additional Sources:

Lynch Syndrome and Ovarian Cancer
I Have Lynch Syndrome
 Ovarian Cancer : The Choice to Be BRCA Tested