A message of hope for pancreatic cancer

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Pancreatic cancer is a difficult cancer to treat because it is hard to detect, and as a large portion of the U.S. population ages, it is on pace to become one of the deadliest.

Wadena-native Steve Nelson, who previously served on the Tri-County Health Care Board of Directors, is a recent survivor of pancreatic cancer. He has devoted his life to bringing his message of hope and awareness to people everywhere who are touched by this cancer.

 

A long history of cancer

Pancreatic Cancer - Steve (right) and Scott

Steve Nelson (right) with his brother, Scott.

Steve’s family history of cancer extends across multiple generations. His great-grandmother died from stomach cancer, his grandmother died from breast cancer, and his mother had breast cancer and passed away from ovarian cancer.

While she was fighting breast cancer, Steve’s mother decided to get genetically tested because of the cancer prevalence in their family. In 2002, she learned she was positive for a BRCA2 mutation. This mutation increases the risk of certain cancers such as breast, ovarian and prostate. And although it wasn’t yet confirmed at that time, pancreatic cancer was later linked to the BRCA mutation as well.

Because the mutation is hereditary, Steve and his seven siblings also decided to get tested. Five of them have the mutated gene, including Steve and his brother Scott.

Just two years later, Scott discovered he had pancreatic cancer. Thanks to a successful Whipple surgery and a clinical trial that used a chemotherapy treatment that matched well with his cancer, he is now cancer free.

“He’s a 15-year survivor,” Steve said. “Back when Scott had his surgery, there was a 4-percent chance he would survive five years. He is incredibly fortunate.”

Two years after that, Steve was diagnosed with prostate cancer but was able to beat it.

Steve and several siblings decided to enroll in the Cancer of the Pancreas Screening Study (CAPS) in 2009, which originated at Johns Hopkins University and was offered at the Mayo Clinic in Rochester. CAPS is intended to provide regular screening for those who are at high risk for pancreatic cancer.

During Steve’s first screening, doctors found a neo-endocrine tumor and a small cyst in his pancreas.

“There was concern, but it didn’t necessarily indicate cancer,” he said.

Doctors continued monitoring Steve’s pancreas. Eventually, after seeing no change, they spaced out the frequency of his screenings to six months, a year, and finally two years.

However, in the spring of 2017, they noticed that his pancreatic duct had narrowed. They put in a stent and took a biopsy. “The surgeon told me, ‘Your cells are about to start something really bad,’” Steve said.

The surgical team removed two-thirds of his pancreas and several lymph nodes, taking the beginnings of cancer with it.

 

Pancreatic Cancer infographicThe need to be proactive

Recently, Steve joined the Pancreatic Cancer Action Network’s (PanCAN) Survivor Council, which is made up of volunteers who share their experiences throughout the U.S. and provide a voice for other survivors.

“Initially, I felt guilt being called a survivor. I didn’t go through all the chemo, Whipple surgery and radiation,” Steve said.

While at one of his first fundraising events, when survivors were asked to be recognized on stage, Steve stayed put. “I said, ‘I’m not going up there.’ They grabbed me by the arm and said, ‘You’re the type of survivor we’re trying to get, one who was able to catch the cancer early.’”

Steve credits his survivor status to regular screenings and early detection. That’s why he has turned his attention to educating others about taking a proactive approach when it comes to their health. He believes that understanding and managing a person’s risk for pancreatic cancer is crucial.

“Many people don’t understand the need for the genetic testing and screening. They’d rather not know. They’re often afraid to find out,” Steve said. “My position is if you’re a first- or second-degree relative of someone who has had pancreatic cancer, you’ll be worried about a possible connection anyway. Why not grab this up front and understand your risk? If you’ve got a gene mutation, why not have doctors and scientists on your side? Why not have regular screenings? The reason I’m alive is because that’s what I did. I was proactive and dealt with the reality early on. Because of the genetic testing and screening, my cancer was discovered when it could be treated much more easily.”

 

A message of hope

“In two years, pancreatic cancer will be the second most deadly cancer in the U.S.,” Steve said, referencing the aging baby boomer generation as one of the primary factors. “Pancreatic cancer is diagnosed much less often than breast cancer, for example, but the mortality rate is much higher. There has been a major focus on prevention and fundraising for breast cancer for many years, and the results have been wonderful. Right now, the five-year survival rate for pancreatic cancer is 9 percent. That’s double what it was, but that’s terrible. A lot of work is being done to increase funding and early detection awareness, but there’s a long way to go.”

As representatives of PanCAN’s Minnesota affiliate, Steve and Scott have had the opportunity to share his story with healthcare professionals and members of Congress, advocating for more funding and education. Progress has been made, but the pressure for better patient outcomes will keep increasing as the baby boomer generation in the U.S. continues to age and become more at risk.

Both Steve and his brother meet often with individuals and families who have been affected by pancreatic cancer. Their primary focus is to help them through the treatment process. When Purple ribbon in woman hands, cancer awareness and prevention campaign.appropriate, they also share the value of using genetic testing and early detection methods such as regular screening.

The goal is to improve patient outcomes and bring them a message of hope.

Steve brings hope by telling his and Scott’s stories as survivors while driving home the importance of regular screenings. Research and treatment for pancreatic cancer has come a long way in 15 years, and when it’s found early, there are many more options, from surgery to clinical trials to targeted chemotherapy.

“I want to have hope resonate with the patients and their families,” Steve said. “There’s no reason to give up even if you have dire circumstances. I know many people who have defied the odds and gone on to lead a good life.

“As concerned as I was about my diagnosis, I never for one minute lost hope. Waging hope is what Scott and I do. And if we can share a bit of that with patients and their families, our work will have been a success.”

 

If you have a story to share about your own health journey or your experience with Tri-County Health Care, please tell us about it here.


Could you be suffering from a genetic bleeding disorder?

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By: Sarah Riedel, RN, BSN – Prenatal Educator and Certified Lactation Counselor

When I was 26 years old, I found out I had a bleeding disorder called von Willebrand disease. I had always bruised easily and had prolonged bleeding, but I didn’t know what “normal” was, so I didn’t think anything of it. While experiencing difficulties with my pregnancy at the time, my OBGYN ran some tests to get to the bottom of the problems. One of the tests revealed von Willebrand disease.

Sarah with her husband and their three children.

Von Willebrand is similar to hemophilia. With the disease, you experience prolonged bleeding because your blood can’t clot properly. You also bruise easier and more significantly than other people. There are several different types of von Willebrand disease, and thankfully, I have the most common and least severe type.

One way this disease has affected my life is with childbirth. Once I found out that I have von Willebrand, I realized I could be at risk for severe hemorrhage after an event such as childbirth. I met with a hematologist and put a plan in place for after delivery. Thankfully, with the correct medications close at hand, the doctors and nurses could administer exactly what I needed to stop the bleeding.

I also had trouble with a surgery a few years later. Knowing about the disease ahead of time probably saved my life! I had medication administered before the surgery to prevent bleeding, and when I started bleeding heavily during the surgery, the surgeon administered platelets, blood-clotting proteins, and two blood transfusions to help me recover.

Since finding out I have this disease, I’ve been proactive about getting my family members tested for it because it can be inherited. We found that my two daughters, my brother and a couple of his children, and another family member also have the disease.

Sarah and her family enjoying a vacation together.

Both of my girls are active in sports, so we carry a nasal spray medication with us in case of injury, and I always make sure to mention it to their coaches and teachers. I always worry about them getting injured as it would be more severe for them than for other athletes. They would bruise faster. Sprained or broken bones would take longer to heal. A bloody nose would not stop as quickly and may take them out for the remainder of the game. There are a lot of everyday little things that I need to remember with this disease in our home. I don’t want them to miss out on a single aspect of growing up because of this diagnosis.

If you suspect that you could have a bleeding disorder such as von Willebrand, please mention this to your physician so you can be tested! It may save your life!

Other sources for more information about von Willebrand or other bleeding issues include:

National Heart, Lung and Blood Institute: What is Von Willebrand Disease?

National Hemophilia Foundation: Von Willebrand Disease

Von Willebrand Disease