By Jennifer King, PhD, LCA Director of Science and Research
Much of the first day of the Cancer Survivorship Symposium that I attended this month was dedicated to talking about Survivorship Care Plans. An early peek at the results of our Needs Assessment Survey (take it today, if you haven’t yet!) suggests that not very many lung cancer patients have these plans after they complete treatment. This is a problem. As pointed out at the meeting, often it is not even possession of the plan that makes a difference in your care, it is the conversations that go into the creation of the plan.
Cancer survivorship can be viewed as its own complex, “chronic disease”. If you have been treated for cancer, you not only have to be monitored for recurrences, you may also be at a higher risk for second cancers, heart problems, fertility issues, emotional problems and more. However, similar to the way cancer treatment is now becoming more personalized and precise, the care of survivors should also be risk-based and individualized.
For example, certain chemotherapies can make you more likely to have late-onset heart problems but others may lead to tingling and numbness in the feet and hands. Shortness of breath is much more common after lung cancer than other cancer types. Doctors should understand YOUR history, not that of “cancer survivors” in general, to be able to best monitor you moving forward. This is the top section of most Survivorship Care Plans – describing your exact diagnosis (type of cancer, stage, etc.) and what specific treatments you had.
The next part of the Survivorship Care Plan focuses on how you should be monitored – and how you shouldn’t. This is important for so many reasons. First, many cancer patients feel disconnected from their care teams once treatment ends. Your oncologist may be focusing more on patients actively undergoing treatment and at some point may want to transition you back to a primary care physician (PCP). The PCP may be reluctant because they may not be well-versed in what is needed for your particular follow-up. The Institute of Medicine, in an important report in 2005, called this phenomenon “Lost In Transition”.
A Survivorship Care Plan can spell out when and how you should be screened for recurrences and for possible side-effects that are relevant to you. It can specify which specialists you should visit and how often. This can give you (and your PCP) more understanding and clarity on how you move forward and who you see for what purpose. This may also give you more emotional peace of mind and can save you time and money. One case example at the meeting showed a patient being followed for too many possible things, some of which she was not at a high-risk for, resulting in unnecessary time, loss of work, and added expense.
Ideally, these plans will be filled out and discussed jointly by you and your treatment team. Hopefully, your treatment team will suggest using one, but if not, here are some templates that you can bring to your doctor for discussion and development of a plan: My Care Plan by Journey Forward, the survivorship plans on Cancer.Net or the LIVESTRONG Care Plan.
The ultimate goal is to plan for the right amount of follow-up care based on YOUR disease and treatment history and enough medical care to ensure you are followed according to known evidence-based guidelines, but not too much that it will negatively impact your quality of life.
On a side note, I would encourage you to talk to your support network (loved ones, friends) about the plan too. Many cancer patients feel like they have a team with them when undergoing treatment. Then, once treatment is over, those people declare victory and go back to their normal lives and don’t realize the challenges of living beyond cancer. Helping your network understand that your path forward may continue to present emotional and/or physical challenges can improve your support as you move into the next phase.
I learned so much at the meeting — but even better was the educating that we did. In a community largely dominated by research on breast cancer, my LCA colleague and I explained to many people that the tide of lung cancer is changing. With coverage of lung cancer screening plus six new drug approvals in 2015, NOW is the time to start understanding lung cancer survivorship because it’s about to start increasing. We were pleased to find that when we talked to survivorship researchers, they agreed.