Clinical researcher turns patient advocate: Meet @stageivsurvivor

TERESA: What brought you to Mayo Clinic Connect? 

@stageivsurvivor: I was doing an Internet search on a topic specific to pancreatic cancer that mentioned a support group was hosted by Mayo Clinic.

TERESA: What motivates you to take part in the community?

@stageivsurvivor: I like the quality of the questions and the responses. Many responders provide informative links.

TERESA: What about Mayo Clinic Connect makes you feel comfortable to share and to be open with the community?

@stageivsurvivor: Participants are understanding, and show compassion and empathy. The diversity of participants provides a wealth of experience and knowledge.

TERESA: What support groups do you participate in?

@stageivsurvivor: I’m active in the Pancreatic Cancer support group on Mayo Clinic Connect.

I am active on a number of social media sites including FaceBook where I participate in Pancreatic Cancer Support Group, Pancreatic Cancer group, Pancreatic Cancer Warriors, Whipple Warrior survivors, Pancreatic Cancer SOS, Lyparza/Olaparib Support, Pancreas IPMN Support group. Other social media sites include Team Inspire and the Pancreatic Cancer sub-reddit on the Reddit platform where I am a co-moderator of that group. I am also on X (Twitter) using the handle @SurvivorStageIV.

My patient advocacy has led to appointments to the GI Cancers Committee of the Eastern Comprehensive Oncology Group (ECOG-ACRIN), Cancer Communications Committee of the American Society of Clinical Oncology (ASCO), Patient Survivor Council and also a patient mentor on the Survivor and Caregiver Network of the Pancreatic Cancer Action Network and a Patient Survivor Advisory Council member of Lets WinPC.org. I also serve as the Outreach Chair of the NJ affiliate of PanCan.org.

TERESA: Tell us about a meaningful moment on Mayo Clinic Connect.

@stageivsurvivor: Questions are often asked about pancreatic cancer related to gastrointestinal (GI) symptoms, weight loss and how to gain weight after surgery like the Whipple or of a tumor in the head of the pancreas. Exocrine pancreatic insufficiency (EPI) is one potential cause, yet it seems to either be overlooked or patients are not being given complete instructions in taking and optimizing their pancrelipase. After asking participants more about their experiences and how they are taking the medication, I sometimes find potential causes in how they were taking their medication or that it needed to be optimized. I provided links supporting the information and received feedback either with a post to the thread or by private message letting me know the information resolved their issue.

TERESA: What surprised you the most about Mayo Clinic Connect?

@stageivsurvivor: It is completely different from any Facebook group I participate in. The integrity and quality of posts are higher. It is easier to search for topics and I like that I receive a daily summary of the topics that have new posts and responses. It is a well moderated site ensuring threads do not contain spam, false information or inappropriate comments.

TERESA: What energizes you, or how do you find balance in your life?

@stageivsurvivor: My first calling in life was a 40-plus year career in clinical research covering cancer, immunology and stem cell research. This background played an important role in my self-advocacy. I was determined to turn a negative life event into a positive one. I was very fortunate in finding my second calling in patient advocacy and find it rewarding and fulfilling. I get energized receiving emails and phone calls from patients expressing their thanks in helping them navigate their care and answering questions. It is very rewarding to learn how my participation led to their getting a treatment, clinical trial, or better outcome than what was expected. The news is not always good and I’m often asked by oncologists and caregivers how I handle hearing sad news. Losing someone is hard but my mission remains to improve the patient experience and quality of life in those undergoing treatment and I never lose my focus on those objectives.

TERESA: Tell us about your favorite pastime or activity.

@stageivsurvivor: My science career as an applications scientist and also in clinical research gave me the opportunity to travel the world and work in Switzerland for ten years at prestigious institutions. Living in Switzerland gave me the opportunity to explore Switzerland in-depth and I make several trips there every year to hike in the Alps and take scenic train rides.

TERESA: Do you have a favorite quote, life motto or personal mantra?

@stageivsurvivor: My personal mantra: Believe in yourself. You are stronger than you think. Advocate for yourself and focus on turning a negative event into a positive result. Don’t worry about what you can’t control—those things are for your care team to deal with. Concern yourself with what you can control and channel your energy to make a difference in achieving a better outcome.

TERESA: What do you appreciate the most in your friends?

@stageivsurvivor: After my diagnosis, all my friends were there for me. I talked about my disease and made them feel comfortable. They all helped in making my recovery easier by preparing meals, going on walks with me, accompanying me to appointments during my recovery from surgery and taking a genuine interest in my treatment, care and progress in making a full recovery.

TERESA: What food can you simply not resist?

@stageivsurvivor: Fine Swiss milk chocolate. Frey milk chocolate is my favorite.

TERESA: What do you love about where you live or vacation?

@stageivsurvivor: I love vacationing in Switzerland frequently. It is a second home for me. I am fluent in the language and customs, and love the Swiss style of living.

TERESA: If Hollywood made a movie about your life, who would you like to see cast as you? 

@stageivsurvivor: Tom Hanks is the actor who I would like to portray me in a movie about my life

TERESA: Puppies or kittens?

@stageivsurvivor: I don’t have any domestic animals but enjoy a daily visit of a herd of deer that make the rounds and graze or bed down on my property. Living in a residential suburban neighborhood, it can be quite bucolic watching the deer, raccoons, opossums, chipmunks, squirrels, red tail hawks and occasional sightings of bald eagles and osprey from the window view of the backyard. I am very fortunate that with every lot in the neighborhood being developed, a small amount of parkland was preserved and is home to so many animals.

I enjoy taking my neighbor's dogs for walks or runs and when they offer to pay me for doing it, I ask them to make a donation to the Pancreatic Cancer Action Network (PanCan.org) instead. It’s a win-win situation—the dogs and I get exercise and pancreatic cancer patients benefit through research funding.

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