Survivorship Research

I've been thinking a lot about the idea of "survivorship" lately. 

In cancer terms, survivorship is what happens after treatment is finished, particularly after treatment has been successful. I've known lots of cancer patients who were just kind of on their own at that point (or maybe who felt like they were on their own).  Once the treatment is done, there's no need for a doctor anymore, right? Except for a couple of visits to make sure everything is still OK?

That was certainly the attitude for a long time. But more and more, cancer centers are creating and promoting "survivorship centers," with specialists who focus on helping out patients after they are "done." As many of us know, after a successful round of treatment, there is still a whole lot to deal with -- the many, complex emotions that come with cancer; physical changes, big and small; financial difficulties with lingering bills. There's a lot to deal with, even after the cancer cells are gone. It's great that more and more cancer centers are recognizing that, and equipping them with social workers, psychologists, nutritionists, pain specialists, and others who can provide some help. 

So how do all of these folks know what to do for cancer patients to help them? That's where survivorship research comes in. The ASCO Post has a nice piece about this subject from two people who know a lot about it -- the lead of evidence-based survivorship supportive care and the director of cancer survivorship and supportive care programs at the University of Miami Sylvester Comprehensive Cancer Center.

They  point out the many, many issues that Survivorship Clinics help patients with -- physical, emotional, and financial -- that I mention above. Add to that short list a few more -- issues with pain, fatigue, sleep, attention and memory, sexual function anxiety, depression. All of those things are very common problems for cancer survivors. It's good to know how common they are. I think a lot of cancer patients have difficulties and think "It's all over now. The cancer is gone. Is all of this in my head?" Probably not. It's good to know that there are places to go to get help.

And here's the good part. Survivorship research sometimes gets its data from clinical trials. Just like developing treatments, survivorship benefits from patients who are willing to be a part of a study. And just like trials for new treatments, survivorship trials often have trouble recruiting.

The ASCO Post article doesn't recommend any specific survivorship trials, but they do recommend a couple of places to look if you're interested in participating. The first is by looking at the National Cancer Institute's database of clinical trials and/or at the U.S. government's clinicaltrials.org site. Both are fairly easy to use. (And they're great for seeing all of the Follicular Lymphoma trials near you, not just the survivorship ones.)

The second is by looking at the websites for different patient support organizations. I've done the NHL search for you, so you can find a list of lymphoma organizations here. Some of them may be participating in, or helping to recruit for, survivorship trials. 

Now, I've talked about the importance of clinical trials many times on the blog, and I always try to find out what my oncologist is excited about in research, and whether my cancer center is doing any trials on it. But also know that cancer patients can be very hesitant about participating in a trial, since the treatments are unproven (that's the whole point f a clinical trial).  One of the great things about survivorship trials is that, in some ways, the stakes are lower. If a patient is worried about side effects of a new drug, the interventions for many survivorship trials do not involve physical side effects. Here's an example from the Mayo Clinic in Minnesota (which has an excellent survivorship program) -- breast cancer survivors who are taking endocrine therapy are in a trial to see if motivational interviews and text messages will help them to remember to continue their therapy. There may be some emotional side effects to a study like that, but not the physical ones that scare off lots of cancer patients from participating in a trial. (And just to be clear, it's worth talking to your oncologist about those fears. They may be fears about nothing, and a good talk with lots of honest questions might calm a lot of those fears.) 

I also know that, for many Follicular Lymphoma patients, the whole idea of "survivorship" can be a tricky thing. The idea that FL is incurable is always in our minds. What does it mean to be a "survivor" if there's a chance that it might come back soon? Is it worth going through the things that "survivors" go through?

I would say yes, absolutely. The National Cancer Survivors Day folks tell us that anyone who has ever been diagnosed and is still alive is a survivor. There's no 5 year waiting period or anything like that. Different survivorship trials might have certain criteria to participate, which is understandable. But being finished with active treatment, no matter what the status, should be enough to make it worth looking into some trials. (Here's another example -- Sloan Kettering in New York has one comparing Music Therapy and Cognitive Behavioral Therapy to treat anxiety in cancer survivors.)

And your status as a survivor certainly opens the door to whatever survivorship benefits are available to you at your cancer center. And if your cancer center doesn't have a survivorship clinic, or you go to a community oncologist in a smaller office, then ask if there are any services for survivors. I'm guessing they're have some suggestions.

Most importantly, be sure to continue to take care of yourselves, physically and emotionally, long after you are finished with any treatment. There's help for you if you need it.