Wednesday, March 25, 2015

Angelina effect - can it lead a new cause for standard of care?

Family portrait - teal toes.
I am grateful for the Ovarian Cancer awareness that has been brought about by actress Angelina Jolie Pitt's medical choices and am grateful to her for sharing the concerns of ovarian and breast cancer after losing her mother and aunt to ovarian cancer. Angelina knew her increased risk and took her medical care into her own hands.

From Angelina's article that she wrote for the New York Times in May of 2013: "I choose not to keep my story private because there are many women who do not know that they might be living under the shadow of cancer," she wrote. "It is my hope that they, too, will be able to get gene tested, and that if they have a high risk they, too, will know that they have strong options."

I think the important thing to remember is that each individual has to weigh their own options, and that women need to have the options available to them. This is where we need a good standard of care not only for those who are at risk of developing cancer, but for those who have had no history of cancer in their family, and yet, are diagnosed with cancer well into Stage 3. Like my mom and my cousin Heather.

What would my mom have done differently had she been able to know her risk? For her, it wasn't good enough to keep a "close eye out for cancer." Her symptoms were symptoms of many other ailments. It was a process of ruling out one thing over another. WHAT IF Ovarian Cancer awareness had been more prevalent 6 years ago... or even 10 years ago? I remember when my mom was first diagnosed with Stage III Ovarian Cancer in March of 2009. Even then people were saying "At least we caught it."

Looking back now, that's not good enough.

There is not a good screening test for ovarian cancer yet... like the equivalent of a Pap smear, which detects pre-cancerous changes in the cervix. Or like a mammogram, which can catch breast cancer very early. Even the CA125 test has mixed results and is not a reliable indicator. It is something to watch, but it's not a definitive identifier of ovarian cancer.

So we have to rely on awareness... which is all fine and dandy,  but we are still at the same point we always have been - talking and sharing Ovarian Cancer symptoms and telling women to pay close attention to their bodies and talk to their doctor. Many organizations do great work on the awareness front. But that is still not enough.

We have to start moving in a direction of a better standard of care for all women where ovarian cancer is concerned - because all women can be at risk.

Thursday, March 19, 2015

World Ovarian Cancer Day May 8

September is designated as Ovarian Cancer Awareness month, however there is another important day on the calendar that is about bringing awareness to Ovarian Cancer: World Ovarian Cancer Day on May 8. The event began in 2013 so it has a couple of years under it's belt.

We are fortunate in the Quad Cities area to have an active organization the NormaLeah Ovarian Cancer Foundation and there are many volunteers who are a part of the OCNA (Ovarian Cancer National Alliance) who are out in the community educating people about ovarian cancer symptoms and disease awareness.

I find surprising that we actually need to educate some physicians on the symptoms - and I'm not blaming or pointing the finger as the symptoms ARE similar in scope to some other ailments. But case in point, my mother had to be persistent in getting to the official diagnosis.

Unlike more common cancers, there are significant challenges as ovarian cancer has been largely overlooked and research has been underfunded to my understanding. Ovarian cancer symptoms are often misdiagnosed, as they can be confused with symptoms of other less severe illnesses, particularly gastrointestinal complaints, and the absence of an early detection test, and the resulting late diagnosis and poor prognosis.

This needs to turn around, and education and awareness are key. As I have been finding my way around, I have come to a conclusion that the standard of care needs to be raised - the current "standard of care" for ovarian cancer is surgery and chemotherapy... and that has remained unchanged for many years. The survival rate is not that great after diagnosis, mainly because it is diagnosed so late. So raising the standard of care for ovarian cancer to require some sort of screening test and an early detection standard in addition to educating each and every doctor in the United States about the subtle symptoms of Ovarian Cancer. I think that should do it.

And there are organizations such as NormaLeah and OCNA who are getting out there and talking to doctors as well as medical students about Ovarian Cancer. So the process has started.

Next time you are at the doctors office, mention Ovarian Cancer and ask what they know. Ask them if they include Ovarian Cancer in their list of diagnosis when a woman comes in with gastrointestinal issues but can't quite put their finger on it. That alone will make a difference.

Friday, March 6, 2015

Paying respects

Burnell's funeral procession of Allis Chalmers tractors. Photo
courtesy of Times, Ottawa. Doug Larson photog. 
My mom is from a small rural town in Illinois called Ransom. Last time I noticed the population was around 450 I think. Maybe less. It is the quintessential sleepy farm town. I spent a lot of summers in Ransom as a child...hanging out with Grandma and Grandpa McCann on the farm. I have good memories there and good memories of the people there.

A couple of weeks ago, Ransom lost one of their longstanding town members - Burnell Bergeson. The Bergeson family farm was north of Grandma and Grandpa McCanns farm. Burnell and Grandpa McCann were buds. After Grandpa died, Burnell and Sherry were the best and took care of Grandma and checked in on her a lot.

Once mom heard about Burnell I knew that she had to go to the visitation and funeral. I wanted to go as well because Burnell was one of the kindest people I ever met. Next to my grandpa - he was one of those few people who could talk to anyone at any time. One of my favorite stories of my grandpa was when he got tied up on the phone one evening and grandma could not figure out who he was talking to. About 20 minutes later grandpa hung up the phone and grandma asked "Well who was that Glenn?" My grandpa replied "I don't know it was a wrong number." Burnell was that type of guy too.

I know it was Burnell's funeral, but it was very endearing to me to see everyone so happy to see mom and tell her how good she looked. I think those are the kind of experiences that has seen her through those tough times when she was first diagnosed with cancer. Another testament to the power of prayer and positive thoughts. Ransom will always be mom's hometown and the people there will always be there to greet her with open arms...and that is the best healing remedy of all.