"You're on your own Kid!"
Standing Alone
May 6, 2009
Congratulations!! You’re in remission! What an awesome feeling. Now what happens? Ever feel this way?
“You’re on your own kid!” Now instead of having a specific point person, your oncologist, quarterbacking your treatment plan, you’ve likely got a bevy of random physicians that you spend time seeing occasionally. But who’s in charge of handing off all the relevant data concerning your complex medical history to the next level of care providers? Is it your job? Is it your oncologist’s job? Is it someone else’s job? Or is it no one’s job? Unfortunately, all too often, the latter is the reality of modern medicine these days.
Recently, I was invited to participate in a webcast about cancer survivor treatment plans. For many of you, you’ve likely never even heard of these. And that is exactly why I jumped at the chance to help out with this project.
A cancer survivor treatment plan is an all-encompassing document that you take with you when you’re finally pronounced “in remission.” Most oncology providers do not offer these yet. But Dr. Scott Baker, Director of Survivorship at the Fred Hutchinson Cancer Research Center in Seattle, in conjunction with support from the Lance Armstrong Foundation, is leading the charge to change this. Dr. Baker explains in the webcast what exactly a “cancer survivor treatment plan” is and does.
Dr. Baker explained that most contain two different sections.
1. Treatment Summary
This section contains all the details about the types of treatments you’ve had. It also covers all the medications, chemo drugs, surgeries and general procedures that you’ve been subjected to. It’s meant to be a one-page summary that you can take around with you to your different health care providers as you go forward with your life. Then when you present to a dermatologist with a seemingly innocent rash on your forehead, he’ll know to stop a moment and consider a wider spectrum of potential causes than he normally sees in his patient population. “If it sounds like a horse, gallops like a horse and smells like a horse…it might still be a zebra!”
2. Survivorship Care Plan
This section is meant to be a guideline for your ongoing treatment. Many times after survivors leave in remission, they feel alone in their health. During treatments, they were surrounded, sometimes for months or years at a time, by an amazing support system at their oncologist’s office. There is a sense of comfort knowing all of the answers to your questions/concerns are just a quick call or visit away. But once you leave active treatment, it can feel like you’re totally on your own. That’s where this care plan steps in.
It normally would contain ongoing treatments, tests/scans and follow up plans, complete with timelines. It provides detailed information for your primary care physician on surveillance suggestions for secondary cancers and comorbidities caused by your previous treatments. It could contain suggestions to care professionals like cardiologists, pulmonologists, neurologists, psychologists and others about potential complicating factors given your exact treatment history.
It also spells out things that you, the survivor, can and should be doing on a daily basis. It covers things like wellness, nutrition and exercise suggestions. It acts as a reminder to the patient that if you follow this advice, you’re a lot less likely to have a recurrence or secondary cancer. There’s even a psychosocial section helping you deal with the emotions of survivorship; something I’m wildly excited to see addressed by the oncology world. (I touch on this need in my book, This Time’s a Charm; Lessons of a Four-Time Cancer Survivor.)
I see tremendous potential benefit in these survivor treatment plans. I sure wish I had one….although I doubt mine would be a “one-pager.” LOL!
Now all we have to do is figure out a way to get them included as part of standard oncology care. In the meantime, you can check out this helpful resource and build your own survivor treatment plan: www.journeyforward.org
Check out this recent webcast I participated in on this topic along with Dr. Scott Baker, Director of Survivorship at the Fred Hutchinson Cancer Research Center: Survivor Care Plan
Fantastic idea!
I think this is really important-- as a nurse who cares for all different types of patients, I frequently see the ball get dropped on communication among care providers. Many people (patients) aren't capable of providing enough information due to their illness or other factors, so having it written is great. One example I thought of right away when I read this was the fact that anyone who has undergone a bone marrow transplant will, from that point on, require specialized blood products. That is an extremely important piece of information that, if not passed on, could create a life-threatening issue. As medical care and treatment become increasingly complicated, the importance of this type of communication increases. Once again, Don, kudos!
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About Don
Don Wilhelm, author of This Time's a Charm and a 4-time cancer survivor, shares his knowledge and experiences with cancer through this Website.
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It's a long road, but worth it!
Firstly, congratulations – I am amazed how one word "remission" can hold so much meaning, health, prosperity, love, value, excitement, trepidation, happiness....the list goes on! What an amazing achievement and path you have travelled. I recently received the 10 year remission clear from my Oncologist, and was so overwhelmed. The years have managed to go past so quickly, I find it almost frightening! I wish I had a remission plan, more to support how to deal with it mentally and emotionally, more than medically.Within the initial remission years I struggled with and then learnt to reduce anxiety between appointments. To learn to live without worrying if the big C will return was hard, to live for today and not fear what might be around the corner. I learnt to let those thoughts and feelings lay deep, but still be aware of what I needed to be. I also learnt that each oncologist appointment was a safety net, if anything was to return better I knew about it so I could fight it. Now my oncologist has told me the great news that I don’t need to visit him anymore. Now I have to learn to live without my safety net – a new challenge. That’s what I’ve found with my remission path, it is a long one, and will be with me forever.The hardest thing for me over the last 10 years was to ensure I didn’t take my life back to pre-cancer stage (for me, this is harder than I thought). Here’s what I focus on:-Eliminate stress from life (whether that is in the form of work, relationships, friendships, family)-Don’t sweat the small stuff….life goes on-Surround myself with happy, caring, loving likeminded people-Be kind to myself, my body, my mind-Give back; I do my own small part in the fight against cancer. Congratulations on all that you have achieved, fighting cancer and winning, writing your book (I just found out about it today, and look forward to reading it one day soon) and all the best for your remission path ahead. Namaste. Martina