OK, another paper from ASH -- this one not focused on treatment, but on its long-term after effects.
The paper is called "Psychosocial Factors and Impact Of Cancer In British Long-Term Haematological Cancer Survivors," and it looks at the psychological (rather than the physical) effects of cancer, and how being a long-term survivor affects Quality of Life.
The study looked at 718 long-term (that is 5+ years) survivors of a variety of blood cancers, including 128 Follicular Lymphoma survivors. The researchers were particularly interested in "psychological distress (depression, anxiety), functioning, and fatigue" in this group, and how that compared to the general population. The study accounted for a number of different factors that would impact how people felt.
They found that the blood cancer survivors had a worse Quality of Life than the general population, with 15% at a distress level that would make them clinically depressed, 18% with high fatigue, and 10% with moderate to severe impairment in functioning. Interestingly, higher positive scores were obtained by the Acute Leukemia patients over Lymphoma patients, and lower positive scores were obtained by patients who were Caucasian, had high education levels, did not have a partner, were depressed, and didn't have much social support. (The low scores for lack of partner and social support make sense. I guess the higher education level does, too -- maybe more apt to spend all day looking up cancer information online and not liking what we see? Not sure about being Caucasian or having lymphoma. Interesting.)
The overall results are not terribly surprising. I'm sure they are even higher among people who are survivors of less than 5 years, since that magical 5 year mark means that most cancer patients are fairly safe from relapse. (Not so much for most Follicular Lymphoma survivors, of course, though there are certainly some very long-term survivors who might dare call themselves cured.
The study brings up two questions for me in particular.
The first has to do with health care availability and its effects on Quality of Life. The paper looks at British patients only; I wonder if their Quality of Life is better knowing that they will have access to health care if they relapse. In other words, would Americans taking the same survey be more likely to be depressed, knowing that they may not be covered, or that they have lost coverage? I'm aware that the law has changed now to eliminate denial for pre-existing conditions, but with so much uncertainty surrounding the ACA, I wonder if that is affecting log-term survivors. And I wonder if any other cultural factors would influence the way the results played out in the U.S.
I also wonder how things differ among patients with different types of lymphoma. Obviously, there are physical differences between indolent and aggressive lymphomas, but I wonder what the psychological differences are, too. Every now and then, I read exchanges between patients of the two types about who has it worse -- the one that is curable but aggressive, with more toxic treatments, or the one that is not curable but slower growing, with a potentially less disruptive quality of life, and the potential to transform? (As an indolent lymphoma patient, I have a harder time representing the concerns of the aggressive lymphoma patients, because I haven't lived through their fears.)
I tend to think cancer sucks either way, and neither of us has it very good. Fears linger, even after a successful treatment, whether the doctor calls "Cure" or not. And cancer also hardens some us, too, whether it's aggressive or indolent.
That's the study I'd really like to see: the psychological affects on long-term lymphoma survivors, and their effect on quality of life. Not so we can lord it over one another and say, "See, I told you we had it worse," but more because I'd like to see more of a dialogue on how it's bad for all of us, and more importantly, how we can help each other out.
The conclusion of the study is this: "The impact of cancer on survivors’ lives is influenced by a variety of
factors. By using a simple means of screening for medical comorbidity,
depression and fatigue the group that needs most support could be
identified early, allowing appropriate interventions to improve
QOL-related measures and promote well-being by addressing both negative
and positive impact of cancer."
Wouldn't it be great to be able identify early the people who will need the most help? The best thing I ever did for myself as a cancer patient was to find a group online who was supportive, knowledgeable, and encouraging. Having them there has been a major factor in my own Quality of Life. It would wonderful if others were able to find that, too.