Finishing Cancer Treatment? Ask For a Survivorship Care Plan

Crossing The Finish Line

​The end of cancer treatment -- when you've finished your chemotherapy, radiation, and/or surgery -- is a time of celebration. It usually marks the finish line after a marathon stretch of appointments, side effects, and coping with the disruption of your normal schedule. 
 
But the end of treatment can also be a big letdown. The frequent visits are replaced by infrequent checkups. The busy schedule eases off. Patients have more time to think about whether the cancer is cured and about their side effects. There may be concerns about physical appearance, uncertainty about future health, or anger about the toll that cancer has taken on their lives.
 
This part of the cancer journey, after treatment is finished, is called survivorship. Survivorship can be incredibly difficult, as patients may feel like they are no longer actively treating their cancer but just waiting with their fingers crossed. Having a road map for the future and an understanding of what’s to come, and what needs to be done, can help alleviate these concerns.

Why a Road Map?

​A road map not only gives patients an idea of what's to come, but can also help people from falling through the cracks.  If a patient knows, for example, that for their type of cancer they need an appointment every 6 months with a special blood test and a CT scan, they can make sure that these get done. If one is missed, often a simple phone call is all that's needed to get back on track. 

These visits and appointments are important for checking on the status of the cancer (hopefully gone!), and managing any lingering side effects. Each type of cancer has specific guidelines around the necessary follow-up procedures required. For some cancers, close follow-up and regular imaging are required, whereas for others, the follow-up is more spread out, imaging may not be necessary, and the follow-up might be done by someone other than your oncologist, like your family doctor. Proper follow-up is a balance: too few visits or investigations can lead to undetected problems, but too many can lead to wasted time and money, unnecessary anxiety, and, in the case of extra scans, unnecessary radiation exposure.
 
A major effort is underway to keep patients from falling through the cracks after treatment by using survivorship care plans (SCPs). SCPs are recommended by the US Institute of Medicine and several other organizations.

What is a Survivorship Care Plan?

An SCP has two parts. First is a treatment summary that includes the following information:

• Contact information of the doctors who treated your cancer
• The diagnosis.
• The stage.
• Any surgeries done, including the date and procedure.
• Any chemotherapy received, including the drugs and dates.
• Any radiation received, including the dose and number of sessions, location targeted in the body, and the dates.
• Side effects of treatment, particularly those that haven’t resolved at the end of treatment.
• For some cancers, any genetic or hereditary risk factors (such as whether people in your family have had cancer) or any genetic tests.

 
Second is the plan for ongoing follow-up. This includes:

• Contact information for your oncology team.
• The need for any additional treatment for your cancer, including the name of the treatment, duration, and expected side effects.
• The schedule of follow-up visits, including who will provide follow-up and where.
• Tests that are needed (CT scans, mammograms, blood tests), their frequency, and who will order them.
• Any screening that is needed to detect new cancers (if it differs from the recommendation for the general population) or any other testing or examinations needed.
• Possible symptoms to be aware of that could signal a return of the cancer and possible important long-term side effects of treatment.
• A list of some of the other important issues that can arise (emotional, financial), with a list of resources for help and statements about the importance of other healthy lifestyle factors.

Where Do I Get a Survivorship Care Plan?

There are two ways:

1. Ask your doctor.
2. Get one online.

Several websites specifically offer free SCPs. These include Oncolife and Journey Forward. Both use a brief questionnaire to gather information from a patient or health care provider, then produce an SCP that can be reviewed with the health care team and used for future reference.

SCPs Will be Trending in 2018!

Until recently, cancer programs hadn't been using SCPs consistently, even though they were recommended more than a decade ago. One study done in 2014 looked at 36 different cancer programs to see how many of those programs were successfully using SCPs. The study defined three benchmarks for success: creating SCPs for 75 percent of patients, delivering them to 75 percent of patients, and also delivering copies to 75 percent of family doctors or primary care providers. Of the 36 programs studied, only one met all three criteria.
 
But the numbers are going to skyrocket this year. Not only are patients becoming more aware of SCPs, but SCPs are now required for many institutions. The U.S. Commission on Cancer  (CoC) is an organization aimed at improving outcomes for cancer patients by setting standards for cancer programs. There are approximately 1,500 CoC-accredited centers in the United States. The CoC requires that by the end of 2018, at least 50% of eligible patients are to receive SCPs at a given cancer treatment facility for it to be accredited. So the use of SCPs is going to increase rapidly.
 
It’s worth getting an SCP. If you are not offered one, you can find one using the resources above, or you can ask your doctor to provide one for you.