Cancer: In My Life-Not My Genes

Kathleen Haden, MSN, RN, ANP, from the University of Virginia’s Emily Couric Cancer Center’s High-Risk, Pancreatic Cancer Clinic, one of the first programs in the country that screens patients with key risk factors for pancreatic cancer.

Kathleen Haden, MSN, RN, ANP, from the University of Virginia’s Emily Couric Cancer Center’s High-Risk, Pancreatic Cancer Clinic, one of the first programs in the country that screens patients with key risk factors for pancreatic cancer.

Recently I reported that I’ve been diagnosed with Type 2 diabetes.

The result I suppose of a perfect storm of some processed foods, less activity than needed and an enormous amount of work-related stress. As the work for Less Cancer evolved, I was trapped in a metaphorical storm funnel of endless days of work, isolation, long hours and an intense travel schedule that included driving thousands of miles a year.

The rewards of this work are enormous: we have changed the landscape of the cancer conversation and had success in expanding education and promoting policy. When Less Cancer started in 2004, the words “cancer” and “prevention” were rarely found side by side. When it came to cancer, it was exclusively “beat, treat and cure,” purely a break and fix model of medicine. The notion of reducing incidences of cancer, as in “Less”, was unthinkable.

Today as I speak to physicians, nurses and public health professionals, I ask that those with the credentials or agency as social influencers to use their education and influence to help support programming and policy that will reduce the risks involved in sharply increasing incidences of cancer.

However, our success seems to have come at a personal price. In my situation, like so many, I was not self-advocating, losing sight of my health needs as I subsumed my life into the organization.

This last February at the National Cancer Prevention Day Workshop we facilitated evidence-based continuing medical education in collaboration with the University of Virginia. One of the many experts we heard from was Kathleen Haden, MSN, RN, ANP, from the University of Virginia’s Emily Couric Cancer Center’s High-Risk, Pancreatic Cancer Clinic, one of the first programs in the country that screens patients with key risk factors for pancreatic cancer.

By monitoring high-risk patients it helps them determine and refine screening guidelines so they can catch pancreatic cancer earlier.

I thought of my family history and the risks I may have relative to a genetic pre-disposition to cancer: My mother died from small cell carcinoma, my sister from pancreatic cancer and my brother from colon cancer.

On my father’s side, I have first cousins who died of cancer of the breast, and pancreas, along with an uncle who also died of pancreatic cancer. On my mother’s side, I know of one cousin who died from a blood cancer. So for people like me, the University of Virginia’s pancreatic screening process could be able to see cancer before typical symptoms appear.

When I learned I was diabetic, which in my case is reversible, I also learned that it represented an increased risk for both pancreatic and colon cancers. So I made an appointment to be screened, where they gathered a detailed family and personal history.

We discussed behavioral risk factors like smoking, alcohol use, and nutrition. (I was a smoker and an occasional drinker – lifestyle changes that can affect my health). And then they performed genetic testing, including the advanced tests to detect pancreatic cancer.

One of the people I met with was Martha Thomas, MS, CGC Certified Genetic Counselor. A couple of weeks later I learned that my blood work for genetic testing revealed: “The cause of the condition reportedly this individual’s family members remains unknown. In the absence of a known familial pathogenic variant, this negative result does not necessarily mean this individual is at reduced risk.”

Martha translated: They had tested me for 20 tumor suppressor, and mismatch repair genes and all of them are working correctly. So no increased cancer risk in my genes.

Interestingly I am still at a higher risk for these cancers because of the family trend because genetics only explains a slight percentage – less than 5%.

Additionally, I had a high-resolution pancreatic magnetic resonance imaging (MRI), where they discovered some small benign cysts which could evolve into cancer and so will need monitoring.

While fortunate my insurance helped, I met the criteria, and was covered.

So my body/genes are doing what it can on its own to fight cancer-good news.

The big benefits will come with diet, and weight loss that will help reverse my diabetes and reduce the risk for cancer(s) and make me stronger in case I ever do develop something worse. The best medicine here, for now, is to carefully watch my lifestyle issues around food, exercise, and sleep. Better life navigation including being able to set up boundaries, especial for those that do not prioritize my needs. My days look like creating new habits of activity that include running and walking. For the last couple of months no treats from anything from cupcakes to cocktails and watching those things that turn to sugar such as bread and pasta. I also was able to meet with Carole Havrila, a dietician, with whom I was able to agree on what we know about what is healthy for me and my condition.

I will be monitored closely by a dedicated team, under the watch of Todd Bauer, M.D.

Dr. Bauer is a surgeon with a clinical focus in pancreatic and hepatobiliary cancers and soft tissue sarcoma. He leads a laboratory research program in pancreatic cancer and is the director of the UVA High Risk Pancreatic Clinic.

Any changes in the pancreatic cysts they found can be diagnosed early and successfully treated.

UVA offers one of the first programs in the country dedicated to the detection and treatment of pancreatic cysts. The UVA Pancreatic Cyst Clinic is part of their Pancreatic Cancer Program, a comprehensive approach to preventing and curing this deadly disease through advanced screening procedures, clinical trials, and cutting-edge surgical procedures.

What we are aware of and now I know first-hand is that most cancer is not genetic. In fact, the evidenced based science indicates is that over 50% of cancer is preventable. My challenge has gone from professional to personal: reduce the risks based on the evidence- based science.

Where I grew up, many have cancer, and in my neighborhood, several of my friend’s mothers died of cancer before we were in high school. We may never know what it was that caused that cancer. Was it the water, air or soil? Was is the pesticides in the elms, rose gardens, lawns? Or was it merely how we lived?

There are no guarantees for monitoring and what we know is that prevention in my case is the best hope for reducing risk to any of these diseases.

My health can be different. I may not be able to change my health history, but as the evidenced based science indicates lifestyle choices can and will decrease those cancer risks.

See Huffington Post 

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