Ovarian Cancer Awareness Month - Yes, there are symptoms

In the United States September is designated Ovarian Cancer Awareness Month.

Nine years ago I had just started chemotherapy for Stage 3b Ovarian Cancer. Back then I didn't know very much about ovarian cancer and the symptom consensus statement (2007) hadn't been written yet.

Today many organizations like the national organizations- OCNA, NOCC, OCRF as well as numerous smaller foundations are concentrating on sharing the symptoms of ovarian cancer with women in their communities.

Just in case you miss some of those incredible awareness campaigns,  the symptoms of ovarian cancer are:

• Bloating
• Pelvic / abdominal pain
• Feeling full/ difficulty eating
• Frequent urination

Other symptoms include fatigue, back pain, constipation and menstrual irregularity.

If you experience symptoms for more than 2 weeks please see your gynecologist.


Dee
Every Day is a Blessing!

What September Brings

Some days during September I wake up feeling great.  The sky is bright blue and cloudless. Temperatures start out cool and get a bit warmer as the day goes on. The weather here in NJ has been beautiful and I’m here to enjoy it.

Some mornings are just as beautiful but my mood is not as upbeat. With the bright sunny day also come the memories. I mentioned this to my husband yesterday as we took a ride to pick up some treats for our dog. I said I remember when we lived in Edison and I would put a cushion on the chair, wrap a blanket around my legs and sit out on the patio in the sun. I was in the midst of chemotherapy and couldn’t do much more than that. Some days I was so fatigued that I never made it outside but would sit by the window up in my bedroom just to get some sun on my face. I would hear the school bus drop off the kids next door. Life outside my room was normal but inside my room, well that was another story.

Some days I wake up ready to spread awareness. Writing my blog, tweeting, co- moderating a tweet chat, attending events and walking in the Kaleidoscope of Hope walk. September is Gynecologic Cancer Awareness month and women need to know their risks. Some of you might say “Dee you do that every day, not just in September”. You are right but somehow the intensity of awareness is magnified this month.

Then there are the days when my stomach feels a bit odd or my back hurts more than normal. Could that mean my cancer is back? Is it because I talk about the symptoms and risks for ovarian cancer over and over this month? Or maybe I am worried as I close in on CT scan time. “Scanxiety” is rearing its ugly head yet again. After all it was early October 2008 when I had a scan that showed the cancer had returned on my spleen and liver.

After 8 years I know the cycle of ups and downs I go through in September. The good days certainly outnumber the not so good days. And it is the support of family and friends that gets me through it all.

Dee

Every Day is a Blessing!

It Really is about Research Dollars

Over the holiday weekend there were many posts on facebook about Ovarian Cancer Awareness Month. I myself posted about hanging ribbons with the Lopez family in Edison. I have been hanging ribbons with them for over 5 years.

Then a friend posted her status. Let me paraphrase what she wrote.

I hope everyone out there hanging ribbons to raise awareness will work hard to lobby their Congressman to support cancer research funding. 

I agree with her 100%. It is wonderful to make women aware of the disease and its symptoms. This way women will get diagnosed at earlier stages. But we also need, dare I say even more than awareness,  the research to better understand the disease,  to develop a screening test for the general public and to better treat the disease. 

We need more federal dollars for research and more private research dollars. 

Lets look at the estimated FY 2013 NIH funding for 3 gynecologic cancers and HPV vaccine research provided by the NIH at

http://report.nih.gov/categorical_spending.aspx

Cervical Cancer - $113 million

Ovarian Cancer - $148 million

Uterine Cancer -  $  42 million 

HPV/ cervical vacccine - $ 26 million

Together they do not equal the $800 million for breast cancer research. Actually most other cancers get more federal research dollars. Only Pancreatic and Liver cancer get lower funding than the gynecologic cancers. 

There is also an Ovarian Cancer Research Program(OCRP)  as part of the Department of Defense (http://cdmrp.army.mil/ocrp/ ) . The DOD OCRP program has a $20 million budget for 2013. 

So when the time comes for research budget discussions please spend the time to e-mail or call your congressman to ask to increase the funding for ovarian cancer research. Or if a local ovarian cancer organization raises funds for research through walks or auctions or other events - make a donation.  

Ribbons matter but funding for research is the key to save women's lives. 

Dee

Every Day is a Blessing!

Sept 10th- Teal Tea to Kickoff National Ovarian Cancer Awareness Month

All women diagnosed with ovarian cancer are invited to the 
Teal Tea Kickoff for National Ovarian Cancer Awareness Month

Tuesday September 10, 2013 
2:00- 4:00 pm 
Chauncey Conference Center  
660 Rosedale Road , Princeton NJ

There is no cost associated with this event. 

 This Tea Party is a sponsored by One Force To Make a Difference ( a collaborative of Ovarian Cancer organizations in the state of NJ)  and Turn the Towns Teal and is organized with the NJ Department of Health and Senior Services.

Please RSVP online at www.tealtea.org ( click on link to event  in right hand column) in order to be admitted and wear teal!

See you there.

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 #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!

OC Awareness Month #5- There are subtle symptoms

With no screening test for ovarian cancer what can a woman do to catch the disease as early as possible?

As ovarian cancer progresses there are subtle symptoms similar to symptoms of gastrointestinal problems but a woman should not ignore them. A woman needs to listen to her body and if the following symptoms happen every day for more than two weeks she should see her doctor- preferably a gynecologist or gynecologic oncologist.

• Pressure or pain in the abdomen, pelvis, back, or legs
• A swollen or bloated abdomen
• Nausea, indigestion, gas, constipation, or diarrhea
• Feeling very tired all the time

Less common symptoms include:

• Shortness of breath
• Feeling the need to urinate often
• Unusual vaginal bleeding (heavy periods, or bleeding after menopause)

Source: NCI http://www.cancer.gov/cancertopics/wyntk/ovary/page5

I experienced pain on my left side and what I thought were symptoms of menopause. I'm glad that I mentioned those symptoms to my gynecologist at my annual visit.  And very happy that she didn't ignore what I told her. She sent me for a transvaginal ultrasound and my path down the road to an ovarian cancer diagnosis began.


You can use this OCNA symptom diary to track persistent symptoms and bring it with you when you visit the doctor.


Dee
Every day is a Blessing!

OC Awareness Month #4 - Can we screen for OC?

There is NO routine screening test for ovarian cancer.

The PAP test does not detect ovarian cancer. It detects cervical cancer.

There are a currently a number of clinical trials being run to detect the disease early. 

(http://cancer.gov/clinicaltrials/search) The only way researchers will be able to develop an early detection screening test is through clinical trials.

Now if the doctor suspects you have ovarian cancer,  based on the symptoms you present,  the doctor may do a pelvic exam, a transvaginal ultrasound or a blood assay test for CA-125. I'll talk about symptoms tomorrow.


Dee
Every day is a Blessing!

OC Awareness Month #2- Some women are at a greater risk.

Yesterday, I wrote that all women are at risk ( increased chance of developing a disease) for ovarian cancer. That is true but some women are at a greater risk for the disease.

#2 Women are at a greater risk for ovarian cancer if they :

• Have a family history of cancer ( BRCA1and BRCA2 gene mutations,Lynch syndrome, hereditary nonpolyposis colorectal cancer)  
• A personal history of cancer (breast,uterus,colon,rectum) 
• Age over 55,
• Never pregnant,
• Menopausal hormonal treatment ( taking estrogen for more than 10 years)
• Use of fertility drugs
• Use of talc 
• Obesity during the teen years

Just because you have a risk for ovarian cancer does not mean that you will develop the disease.  And women develop the disease without having these risk factors.

Source : NCI http://www.cancer.gov/cancertopics/wyntk/ovary/page4
Dee
Every Day is a blessing!

Right Around the Corner- Ovarian Cancer Awareness Month

September, National Ovarian Cancer Awareness Month,  is right around the corner. It looks like it will be a busy month in our area.

If you are ready to walk to raise awareness, funds for research or to support women with ovarian cancer you have lots of choices in NJ. Try the Teal Wings of Hope Walk in Hamilton on September 1st, the Kaleidoscope of Hope walks on September  9th,16th or 29th , or the NOCC Northern NJ Walk to Break the Silence on the September 23rd.

Want to dress up and party? Try the Sandy Rollman Foundation's Teal Passport Gala and Auction on Sept 15th in Philadephia.

How about a seminar , fashion show and exhibit in support of the Ovarian Cancer Research Fund ? Register for the Color of Teal Expo on Sept 29th in New York City.

Here is what is in store for me. After hanging my Teal Ribbon Garden flag,  I'll be wearing Teal on Wear Teal Day ( Sept 7) to raise awareness of Ovarian Cancer.  At the end of the month I will be volunteering at the Kaleidoscope of Hope (KOH)  Walk in Avon, NJ ( Sept 29th).  I'd also love to break the $5000 mark on my personal fundraising page in support for the ovarian cancer researchers at the Cancer Institute of NJ.

So what will you be doing?

If you are part of an organization that will be having an event in September please let me know the details and I will be happy to spread the word. Thanks.

Every Day is a Blessing!

On the back burner

Usually September is a very busy month for me. For the past 5 years every September I have committed countless hours participating in ovarian cancer awareness events- giving talks, hanging ribbons, raising money for research etc. ( September is National Ovarian Cancer Awareness month.) I feel strongly that all people, men and women from legislators to teenage girls, hear about ovarian cancer symptoms, the way the disease affects a women's life, the need for an early detection test and the important research that still needs to be done in order to understand the disease and find a cure.

So far, September 2011 has been different. I have been spending my days away from home helping my daughter and son-in-law with their new son. I am tired but thrilled to be able to help them and get to know my new grandson. My ovarian cancer diagnosis and my advocacy work has been the furthest thing from my mind these past few weeks. I wake up thinking about John not about cancer.

Mentally I feel different too. I have reached another milestone in life - becoming a grandparent. Meeting a grandchild was something I never thought in a million years I would have the opportunity to do 6 years ago. Heck,in July of 2005 I didn't think I would make it to my niece's wedding the following May. And here I am experiencing this wonderful part of life.

My advocacy work will continue. Right now it is just on the back burner.So watch out September 2012- there will be teal toes, teal walks, teal talks and teal ribbons. Just not anything on the 2nd because that is Theresa's special day and not the 6th because that will be John's birthday celebration!

If you are interested in ovarian cancer events in NJ that will occur during the rest of the month please click on the link to my Events page.

Dee

Every Day is a Blessing! John is the new blessing in my life.

Will You Join Me and Wear Teal on September 2,2011

I invite all my readers to wear teal on Friday September 2,2001 to highlight National Ovarian Cancer Awareness month.

When people say" What a nice color" please tell them that you are wearing teal to raise awareness of Ovarian Cancer and to honor the thousands of women diagnosed with ovarian cancer in the United States each year and the roughly 800 women diagnosed in New Jersey.

Don't forget to tell those you speak to that there are subtle symptoms-

B- bloating

E-eating less

A- abdominal pain

T-trouble urinating

Thanks!

Dee

Every Day is a Blessing!