Survivorship and Lymphoma

I've written a lot lately about the idea of "survivorship" -- what happens after treatment is over. It's an important issue for al cancer patients. Very often, health professionals are focused on making us better, and there isn't time or resources or expertise to deal with what happens after that. 

That's changing somewhat, and more and more cancer centers are focusing on survivorship, sometimes by having a dedicated office or clinic for patients who are no longer "patients," but who are still dealing with the physical and emotional effects of cancer, months or years later. That's certainly not the case for every cancer center, though.

I bring this up again because JCO Oncology Practice recently published an editorial on the topic, specifically on survivorship for Lymphoma patients.

I'll get to that, but first I want to look at the article that the editorial was responding to. It was aso published in JCOOP, in February. It's called "Perspectives of Lymphoma Survivors and Oncology Care Providers on Survivorship Care: A Qualitative Study." The article presents research based on in-depth interviews with 32 Lymphoma patients and 13 oncologists. This is what a "qualitative" study is, as opposed to a "quantitative" study. Rather than giving a survey to a large number of patients and presenting the results as numbers, it looks at a smaller number of patients and looks for themes and patterns in their words. (Both types of research can be valuable.)

The research found three main themes. I don't think any of them will surprise you. The first is that Lymphoma patients often have a "profound fear of recurrence" and anxiety after treatment is finished. Patients wanted more information about signs and symptoms that their cancer might return, and more reassurance from their cancer team. 

The second is had to do with which doctor to see after treatment was "finished." Some wanted to continue to see an oncologist. Some were forced to see a primary care physician instead. Others saw the value of seeing a PCP but had trouble finding one. It's a complicated issue, and one that came up during the Follicular Lymphoma Foundation webinar that I spoke at earlier this month.  

Finally, during the interviews, it became clear to the researchers that formal survivorship programs were necessary, and that they needed to include psychosocial support, wellness services, and assistance with financial and employment programs to help survivors transition to their different lives. 

That last sentence was a hard sentence to write -- I tried "go back to their old lives," but there's really no going back. Then I tried "their new lives" but that's not right either, because it kind of implies that everything is OK after treatment is over, and it's not. So I went with "different lives," which I'm also not satisfied with, but which is probably more accurate than "old" or "new." And that pretty much sums up why survivorship is such a complex topic, doesn't it?

And I also recognize that "survivorship" is different Follicular Lymphoma survivors. That first one, the fear of recurrence, might be worse for us. If you're like me, you've been told since diagnosis that it's incurable, and we can expect to to come back. So maybe it's better, not worse, since many of us just accept that recurrence is inevitable and we can prepare ourselves for it?

 Like I said -- it's a complex topic. And it affects each of us a little differently. 

Which brings us to the more recent piece from JCOOP, published a couple of weeks ago, in response to the qualitative research above. It's called "Bridging the Gap: The Essential Role of Lymphoma Clinicians in Guiding the Transition From Lymphoma Treatment to Survivorship." 

As the authors of this piece note, one of the big issues related to survivorship is the lack of information that Lymphoma patients receive about what their lives will be like after successful treatment. That's certainly a factor in the fear that patients feel in that first theme. And its a factor in the second one, too, in the confusion about seeing an oncologist vs seeing a PCP -- will a PCP know enough about Lymphoma to be useful? Ideally, the type of information that patients receive would be personalized, since each of us does deal with survivorship in our own way.

Given that JCOOP is a medical journal for oncologists that work with patients, the recommendations from the authors are aimed at Lymphoma clinicians -- the oncologists that work most directly with Lymphoma patients. But they have lessons for us as patients, too.

Their first bit of advice for oncologists is to Prepare -- to start conversations with patients early, and continue them over time. Since patients tend to be focused on the present, it helps to gradually and repeatedly introduce the idea of survivorship over time, to let it all sink in. They suggest the use of Survivorship Care Plans -- a written record of your treatment and symptoms, including emotional symptoms, and how you'd like your concerns to be addressed. That's an excellent idea for us as patients -- consider creating one even if your oncologist doesn't suggest one formally.

The second bit of advice is to Acknowledge and Assess -- for the oncologist to ask questions about emotional well-being and fears, and to recognize that they are valid. As patients, we can help here by bringing them up even if the oncologist does not. I think it's also important to be prepared to have an oncologist that may dismiss them ("You have nothing to be worried about") or downplay them, or just not know how to deal with them. I like to think that someone in oncology would be well-aware of patients' fears, but I know that isn't always the case. Be open about it anyway. If nothing else, it will be a good education for the oncologist.

The third piece of advice for oncologists is Connect -- to be aware of survivorship services and help patients make contact with them. Again, as patients, we can ask questions about these kinds of services. They are often available, even if some oncologists don't know that. Pushing for information might make a less-informed oncologist seek out the information. And a well-informed oncologist will be able to pass on that information to you.

Finally, the last bit of advice for oncologists is to Evaluate and Document -- to ask patients how they are doing and make sure that their emotional well-being becomes a part of the permanent record. Again, we can help as patients by making sure that we bring up the subject ourselves. And it's not just emotional issues or concerns -- we should bring up physical issues, financial issues, anything that cancer has done to make our lives different.

As you can tell, I think the message to oncologists is interesting, but more importantly, I think the JCOOP piece provides an opportunity for us as patients. Some of us might be fortunate enough to be affiliated with a cancer center that has a survivorship program, and to have an oncologist that knows about it and intervenes early. Or maybe the opposite is true -- no program and an oncologist that isn't aware of the issues. Or maybe something in between.

Whatever the case, I think it's important for us as patients to be proactive. We need to be aware of our own needs, and unafraid to bring them up. If enough of us do so, it becomes a regular and expected part of our conversations with our doctors. That's good for all of us.

Stay well, and stay proactive.