By Bill Potts
Beating cancer five times has been challenging beyond belief. The impact on the body and mind is cumulative. As my cancer is incurable, it is inevitable that to reach my goal of living to age 93, I will need to beat cancer many, many more times. The uncertainty of when that fight will start again is an immense weight.
My 21 year fight, though, has taught me how to wage the battle better. I accidentally became an expert at fighting cancer – and I will carry those lessons with me like a soldier carries a shield.
I have made many mistakes and learned a lot along the way, though.
This five-part series will share lessons and insights gained from my experience. These insights will make a positive difference in the cancer journey of not just the patient but also the family and friends of the cancer patient. The series will include the next steps after a diagnosis, how to pick a care team, support others during treatment, and a bonus article on insights from my wife, Kim.
What is the most important lesson for a cancer patient? A cancer patient must own their cancer journey. The patient must own not just one piece of it – but all of it. It is counter-intuitive to many that the patient owns their journey. Many believe the doctor owns it. But this is wrong. The patient needs to be in charge. The stakes could not be higher.
I would likely not be alive if I had not managed my journey. But, at first, I did not own it. I am still paying the price and may – with my life.
My Story
In 2003, my Primary Care Physician (PCP) referred me to a small, local for-profit oncologist after my PCP’s diagnosis of thyroid cancer. The oncologist directed the complete removal of my thyroid plus hard-core radiation treatment. I did not question the doctor nor get a second opinion. The radiation I received to kill any remaining thyroid remnants was the same radiation released by Chornobyl.
Less than one year later, this oncologist informed me after a scan that my cancer was back. He recommended another round of radiation treatment. At that moment, I knew I had to own my journey. How could my cancer possibly be back after surgery and radiation?
So, I did what I should have done when I was diagnosed the first time. I went to a high-volume cancer center (MD Anderson Cancer Center) and got a second opinion. They told me my cancer was not back and the radiation I had received was too high. We will never know for sure, but it is likely that my incurable lymphoma, cancers #2-5, was caused by this high dose of radiation. If I had not gone to get a second opinion and had received another round of radiation treatment, I would not be alive. The second opinion saved my life.
Own The Journey
So now, I, the patient, own the journey.
What does this mean? It means the patient picks the care team. The patient gets second opinions. The patient becomes an expert in their cancer – including treatment options and treatment side effects. The patient treats fighting cancer like a job. I know from experience that this can be a full-time job. If you are working, it is a full-time job on top of a full-time job.
Prioritize making the time to manage your cancer journey. Nothing is more important.
The following post will provide essential insights into the next steps immediately after getting the news of a cancer diagnosis.
Bill Potts is the author of “Up for the Fight: How to Advocate For Yourself as You Battle Cancer, from a Five-Time Survivor.” Bill has a wife, Kim, and three kids, Nicholas, Anna and Sarah. His dog, Pippa, is constantly by his side. Bill is an entrepreneur, IRONMAN athlete, motivational speaker, and author—more on Bill at billcpotts.com.
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