Cancer survivorship and adulting is A LOT for anyone to manage, but especially if you’re an emerging young adult preoccupied with employability, health insurance coverage, and independent living. However, part of ‘adulting’ is recognizing that the lifelong need for customized follow up medical care because of your cancer treatment rests squarely on your shoulders and no one else’s.
I was asked recently when I took over responsibility for my survivorship care; the short answer is in my late teens, early 20’s.
The truth is I outlived the recommended follow up of my clinical trial and to some degree flew by the seat of my pants albeit in a systematic manner for more than a few years until late effects data began to mount. There were no long term follow up clinics when I was a teenager. As a result, I made things up as I went along based on what I knew about the potential long term side effects for the medications I received.
I digress; back to the question of when.
I took the reins during my late teenage years as I prepared to leave for college and by my early 20’s I shouldered all responsibility providing my parents with pertinent updates, but not involving them in the minutiae of my healthcare. I was well versed in my treatment history [and] I had a plan.
This worked for me; it doesn’t work for everyone.
It was my professional observation as a late effects nurse practitioner that more often than not it is more difficult to wean the parents than it is for the ‘kids’ to lay hold of the responsibility.
It should be noted, my parents did an excellent job of educating and equipping me to the best of their ability with the knowledge available at the time. They gave me roots and wings and they did an excellent job at letting me go when I’m sure they would have preferred to hold on a little longer. When I was 17, my mom gave me my very own copy of my treatment records and the proverbial baton was passed.
That being said, I came across a book entitled, ‘The Late Effects of Cancer Treatment’ by Wendy Hobbie, a pediatric oncology nurse practitioner at Children’s Hospital of Philadelphia at the time; this book proved priceless to me. I credit this book as foundational in the way I have navigated survivorship in the wellness community and with my level of wellness in the face of a few significant late effects: pulmonary and cardiac. Hobbie’s book serves as a guide in creating a treatment summary and the basis of my survivorship follow up plan.
This document has been given to almost every provider who has been invited to be a part of my care team since my junior year in college. Presently, all of my healthcare is provided by an internist, the head coach over all of my special teams, if you will. As the chief stakeholder, I am an equal partner in that I share in the decision-making process.
I keep a master list of follow-up needs and screening intervals. Presently, the interval is annually for some and every 6 months for others. I seek to contain these appointments to the months of May and November so that the rest of my year is essentially free of the medical world.
So, do you have your treatment summary?
Yes, great; No, get one!
Do you want to be seen in a formal long term follow up clinic or do you want to be followed in a primary care setting?
There are advantages and disadvantages to both, but I’ll save that for a different post.
If you want to be followed outside of the cancer world, you will have to be selective and interview potential providers. Dr. Pepper had never taken care of an adult survivor of childhood cancer, but with summary and guidelines in hand, I asked her to take me on. We both are well aware of our limits and we know when special teams are needed.
She, however, is home to me, the quarterback of my team, and a fierce advocate on my behalf.
Living the cure isn’t easy. It’s a daily thing. It’s A LOT to manage and navigate; however, it is doable and you can do it well. You must, however, be willing to advocate for your needs.
Take your responsibility seriously; do NOT be cavalier with the life you worked tirelessly to preserve.
Your life awaits YOU; approach it expectantly and with great hope, and of course, with the diligence it deserves, demands.