Prompted by a hashtag!

For World Ovarian Cancer Day on May 8th this year, OCRA ran a campaign called #ReachForTheScars. OCRA's goal with this program was to spotlight the stories, experience and the physical visible and invisible scars of women with ovarian cancer .

We who have been diagnosed have scars that are visible - although we may choose to hide those and some scars that are invisible. Your life being on the line can be a stressful and dare I say traumatic experience for those diagnosed with ovarian cancer. So with these scars there are stories. Here is mine once again. 

For World Ovarian Cancer Day, I chose this year to do a quick watercolor painting of my scars as part of the #ReachForTheScars campaign. These scars are hidden under clothes most of the time. You will not see these scars since you won't find me wearing a bikini or crop shirts. 

The first scar was the vertical one, made in 2005. It came after an hours long surgery - hysterectomy, oopherectomy and debulking surgery for stage 3B high grade serous ovarian cancer. This one healed over time as I continued treatment with nine cycles of carboplatin and taxol. In 2006 there was no evidence of disease. 

I recurred in 2008. The lesions that appeared on my liver and spleen were discreet,  so surgery was an option. I had choices : chemo ( carbo / taxol again) first then surgery, chemo first then surgery or a clinical trial which included bevacizumab.  I chose the surgery first which was done by a surgical oncologist along with my gyn onc. That surgery is what led to my second scar, a  horizontal one.  The surgeon removed my spleen on the left side of my abdomen and resectioned the lower lobe of my  liver which was on the right side of my abdomen. Their removal at the same time is why my OC scars now look like a T. 

Along with other cancer survivors, I carry invisible scars too. I continue to fear a recurrence. The fear is not as strong as in the early years of my survivorship but there are times when news of another long term survivor recurring after 15 years brings it back into the forefront.  I deal with some neuropathy in my toes. I have learned to deal with it by buying shoes with larger toe boxes. I admit they are not the most fashionable shoes but they work for me. And let's not forget how I still forget the names of things.  Thanks chemo brain!

I had thought that those two scars would be my last but just this week I have gained a new one. In April, I pointed out a new pink rough spot on the back of my arm to my dermatologist. After a biopsy came back that the spot was basal cell carcinoma, I decided to have incisional surgery this week to have it removed . This scar will be more visible due to its location and may lead to people asking questions about it. That is OK though. Then I can tell them how important it is to check your skin and see a dermatologist if you see anything new or a spot that changes in appearance. As we head into summer -my advice is to wear sunscreen , hats and spf 50 clothing when out in the sun for a period of time. 

 Do you have hidden scars caused by ovarian cancer? Share them in the comments. 

 Dee

Every Day is a Blessing! 

 

 

September is OVARIAN CANCER AWARENESS MONTH

I am not sure where the month of August went and here we are starting September. If you have followed me for any period of time you are probably already aware that September is Ovarian Cancer Awareness Month. Teal is the awareness color for ovarian cancer. 

Teal Awareness Ribbon for Ovarian Cancer Awareness Month 

 Let me start with these important facts:

There is no screening test for ovarian cancer. 

Approximately 20,890 women will be diagnosed with ovarian cancer in the US in 2025. *

Approximately 12,730 women will die in the US in 2025 due to  ovarian cancer.* 

 

I have been an advocate for ovarian cancer research for 15+ years.  While we have made strides in treatments( VEGF inhibitors, Anti-body drug conjugates,  immunotherapies) there is no cure.  That is why raising funds for research is so important. 

This year due to NIH funding cuts raising awareness of ovarian cancer and more importantly funds for research take on a greater urgency. I will be posting symptom and risk information as well as other resources throughout the month in my small effort to raise awareness.  

I will be raising funds for research this year by walking on Sept 28, 2025 at the Kaleidoscope of Hope Ovarian Cancer Foundation walk at Loantaka Brook Park in Morristown. Join me, my family and friends as we walk as Team Determined. We are walking to honor the memory of a dear friend, Mary Lu, who passed away in July due to ovarian cancer. Donate to Team Determined at https://www.classy.org/team/766060. 

If you live in other areas of the country, check to see if there will be walks or other fundraising events being run by ovarian cancer organizations by you. Or donate to support research through OCRA or Foundation for Women's Cancer .

Thank you in advance. 

 Dee

Every Day is a Blessing!  

* https://www.cancer.org/cancer/types/ovarian-cancer/key-statistics.html

 

 

Managing the Risk of Ovarian Cancer - OCRA

I've been meaning to write about OCRA's latest consensus statement. So I am happy to share this information/ text from the Ovarian Cancer Research Alliance.

 

Ovarian Cancer Research Alliance (OCRA), with the full endorsement of the Society of Gynecologic Oncology, has launched a new campaign in the fight against ovarian cancer, a bold and important direction for everyone who cares about the future of this field and who cares about saving lives.

The campaign, called Until There’s a Cure, urges people to know their risk; promotes genetic testing to at-risk populations; and encourages women and anyone born with ovaries to discuss prophylactic surgery with their doctor.

“There is currently no cure for the deadliest of all gynecological cancers, nor is there a way to screen for it that has any impact on mortality. But we know there is a way to dramatically reduce the risk,” said Audra Moran, President and CEO of OCRA. “Ovarian cancer is considered a rare disease, but for those with a family history and/or genetic mutation, the risk jumps to 40-50% or even higher. So, knowing one’s risk level is critical. We also know that 70% of ovarian cancer begins in the fallopian tubes, so we are encouraging people who are done having children to discuss with their doctors the possibility of having their tubes removed. Essentially, we want everyone with ovaries to know their risk level, and to know the actions they can take to help prevent ovarian cancer. Until there is a cure, these are our best weapons in this battle.”

Because knowing one’s risk level is critical, OCRA is providing free at-home genetic testing kits to anyone with a personal or family history of breast, gynecologic, or colon cancer. These individuals can fill out a brief questionnaire to determine whether they qualify for the program, and, if they do, have the kits sent to them at no cost. (The test kits are being offered to people 18 or older in the United States only.)

Concurrently, OCRA urges women and those born with ovaries to discuss preventative action with their doctor. Scientists know that the most common and lethal form of ovarian cancer actually starts in the fallopian tubes, with microscopic precursor lesions developing long before any symptoms would ever arise. People who are at increased risk for developing ovarian cancer should consider bilateral salpingo-oophorectomy (removal of both fallopian tubes and ovaries) or bilateral salpingectomy (removal of the fallopian tubes, but keeping the ovaries in place so as to avoid surgical menopause). Those at average risk for developing ovarian cancer and who are undergoing pelvic surgeries for benign conditions (hysterectomy, tubal ligation, cysts, endometriosis) should consider having their tubes removed at the same time (a procedure known as opportunistic salpingectomy).

“Opportunistic salpingectomy is not targeted toward specific patients. It is not meant for high-risk patients,” said OCRA’s Scientific Advisory Committee member Dr. Celeste Leigh Pearce at University of Michigan, who co-authored a recent study on the subject. “We are targeting the 80% of high-grade serous cancers that arise in people with no genetically increased risk for ovarian cancer and trying to reduce the incidence of ovarian cancer overall by providing this safe and seemingly effective procedure at the time of hysterectomy or instead of tubal ligation.”

The new, aggressive strategy replaces decades of a focus on symptom awareness and early detection, after a rigorous clinical trial in the United Kingdom that followed more than 200,000 women for more than 20 years revealed sobering and deeply disappointing news: that current screening methods do not impact mortality in average-risk women. Put more simply, the trial showed screening and symptom awareness will not save lives.

“This is incredibly hard information to accept and runs contrary to almost all messaging related to ovarian cancer awareness to date. However, to ignore learnings gained from current research would be detrimental to the wellbeing of women and the future of ovarian cancer research,” said Moran. “We have to focus our limited resources on what we know actually works.”

Learn more about the campaign and how to receive free, at-home genetic testing.

 Dee

Every Day is a Blessing!