Rob is a guest blogger and a cherished friend of OncoveryCare. His thoughtful reflections and lived experiences bring a unique perspective to our community, offering inspiration, encouragement, and a sense of shared understanding. We are incredibly honored to have Rob share his journey with us. At OncoveryCare, we believe in the power of connection and storytelling to foster healing and hope, and Rob’s blog beautifully exemplifies that mission. We invite you to join us in celebrating his voice and insights.
The words were not new. Many of us, particularly parents who have endured ‘terrible teens,’ or who wear the title Boomer as a sign of pride, have heard, “…you’re boring!” I consider it cautious wisdom based on decades of experience, but that argument usually carries no weight. However, when your oncologist utters these exact words – YOU’RE BORING – they have incredible weight. For this 10-year surthrivor, the words were quite impactful.
What did my oncologist mean?
After reviewing my latest scans, she saw nothing worrisome – no difference between 2023 and 2024. Nothing extraordinary is celebration worthy – like the University of Michigan football team winning the National Championship in 2024 – (Go Blue)!
My baseline over the last few years was flat as a pancake. No changes are seen, which is an excellent report for a cancer patient. There is no evidence of disease. My oncologist even suggested that medically, I was cancer-free, but truth be told, I will never consider myself to be free from cancer.
I am a cancer survivor; the fact that my oncologist sees no evidence of disease is beyond reassuring; it’s music to my ears. Yes, there may be no specific evidence of cancer in my scans or my body. Still, there is plenty of evidence of the varied challenges of cancer survivorship. These are part of my everyday life.
Cancer survivorship focuses on:
“The health and wellbeing of a person, including the physical, mental, emotional, social, and financial effects of cancer diagnosis and treatment on the patient. It also should include the needs of family members and caregivers.”
Shortly after I completed my cancer treatment in 2015, I faced a series of new challenges. My frequent treatment visits to my oncologist and radiation oncologist were quickly replaced by periodic scans and trying to determine my "new normal".
It was essential to establish a post-treatment care plan both in case of cancer recurrence and to focus on how to manage my lingering side effects best and rebuild my overall wellness.
Initially, I had scans every 3 months to closely monitor post-treatment changes.
These visits always led to a bit of Scanxiety as the test approached and then waiting for the results. I had a wide variety of side effects requiring active medical intervention.
Some were expected and associated with my chemotherapy and radiation treatments, including neuropathy, fatigue, and gastrointestinal issues. Others were more significant:
- Iron and hemoglobin deficiencies that led to internal bleeding, many blood and iron transfusions resulting in a GI Anastamosis Bypass Procedure;
- Shingles – and yes, it is rather painful. Was this connected to my pancreatic cancer? I’m not entirely sure, though shingles are more likely with a compromised immune system;
- Malnutrition and ascites led to many paracenteses and eventually a TIPS procedure (Transjugular Intrahepatic Portosystemic Shunt). A TIPS procedure involves placing a stent between the hepatic vein and the portal vein to create a shunt. The stent keeps the connection open. The procedure can reduce the risk of internal bleeding from the stomach and esophagus and fluid accumulation in the lungs or abdomen.
- Multiple hospital stays due to infection and sepsis. These were the result of a blocked shunt from my TIPS procedure. Cancer related? Again not wholly sure but for me, it’s all connected. Just like the classic children’s song ‘Dem Bones,’ our bones are connected from foot to head to fingers (I’m a bit partial to “the hip bone is connected to the thigh bone”).
The medical challenges of cancer survivorship are significant. Coordinating care can be cumbersome, particularly as a patient transitions from active cancer treatment to post-treatment monitoring and care. As the number of cancer patients and survivors continues to grow, the stress on the healthcare system is already being felt.
The American Society of Clinical Oncologists projects a shortfall of over 2,200 oncologists as soon as 2025.
This cancer patient overload will result in oncologists focusing on patients currently in treatment (as they should) and ‘returning’ treatment survivors back to their primary care physicians, who may or may not be equipped to address the unique needs of cancer survivors, including:
- Lingering physical issues, both the side effects of treatment but also related issues from having cancer and stress on the body;
- Fear of cancer recurrence
- Anxiety and depression associated with limitations associated with a survivor’s “new normal.”
- Family/work/social issues that survivors face
Cancer survivorship is complicated. It requires planning, just like investors working with a financial planning expert. You need to articulate your healthcare goals – physical and mental wellness over time. The survivor, caregiver, and medical team should develop a pragmatic plan to achieve these goals that considers everything from improving nutrition and wellness to possible cancer recurrence or other related medical issues.
Like a sound financial plan, it should be carefully monitored, revisited, and updated to reflect the most current information, be it changes to the survivor’s medical health or the medical treatment options available, including any recent breakthroughs. And just like a good investor who seeks the help of a certified financial planner, a survivor should seek the help of a provider who is experienced and knowledgeable in dealing with cancer survivors, even if that is not the oncologist who managed your treatment.
I may never consider myself “boring,” at least from a medical perspective. It may not be evident in scans and bloodwork. Still, it’s ‘ever-present’ – be it the pancreatic enzyme I take at meals to help me process food or waking up at 5:30 every day to walk to try to ‘settle’ my GI system or the periodic sharp belly pains that only last a few seconds but serve as a reminder some serious surgery over the years or the anxiety of waiting for the latest scan results.
Regardless of how ‘boring’ I am today, I still struggle to realize that I will never be the same person I was before my diagnosis. My goal is to be a cancer surthrivor – thankful for the medical advances that provided me with another chapter but ever mindful of my plan to thrive as a survivor in my new everyday life.
Rob is a three-time cancer survivor, including a pancreatic cancer diagnosis is 2014. He spent twenty-five years working in pharmaceutical Research & Development. Currently, Rob serves on patient advisory boards with several organizations, including a pharmaceutical company, a health system, several startup companies, and advocacy groups. Rob also publishes a blog on the patient journey – “Through the Patient Lens” – presents at conferences and is a moderator of ANCAN’s Pancreatic Cancer Support Group. Rob and his wife Dena reside in Philadelphia, PA.
To connect with Rob, add him on LinkedIn: https://www.linkedin.com/in/robertweker/
