I am very interested in issues related to Survivorship -- what happens after a patient is "finished" with cancer. Part of why I find it interesting is because it's so hard to know when Follicular Lymphoma is "finished." Since it's still considered incurable, we're kind of always "patients" rather than "survivors," at least the way most people use those words. Personally, I call myself a "patient," to remind myself that there's no guarantee that it's not coming back.
But the other reason I find Survivorship so interesting is because I hear stories from so many patients (through email, on Facebook and Twitter, etc.) about the problems they encounter after their cancer is "finished." There are hospitals that have Survivorship programs, to help patients who have finished treatment. the best ones deal with a whole range of issues -- physical, emotional, even financial. But any help is great. So when I hear negative stories, especially about patients whose doctors have dismissed their concerns, it makes me sad and angry.
All of this was prompted by an article that just came out in the Journal of Palliative Medicine. "Palliative medicine" is often thought of as only related to hospice, which is a shame. Palliative medicine focuses on pain management and making patients comfortable, no matter where they are with their cancer (early on, still in treatment, out of treatment, or elsewhere).
The article is called "'It Is So Easy For Them to Dismiss': A Phenomenological Study of Cancer Survivors with Chronic Cancer-Related Pain."I actually learned about from a Twitter thread written by the lead author, Dr. Katie Fitzgerald Jones, who went into depth about what the article says.
It's an important topic for survivors and patients -- whichever word you want to sue for where you are. Cancer as a disease, and cancer treatment, and the treatments that help us with side effects -- all of them can cause us pain of different kinds. And a lot of times it is chronic pain -- pain that stays with us even when cancer and its treatments go away. The research for this article is based on deep interviews with 13 cancer survivors (with different kinds of cancer, not just FL or even blood cancers). Their experiences were very similar.
The researchers found three main themes in the interviews.
First is the emotional relationship that patients had with pain. Many of them found that the chronic pain was accepted as a kind of trade-off for being alive. In other words, they felt like they just had to deal with the pain, and some even felt guilty for complaining about it. Doctors have a hard time with pain management in survivors because there isn't necessarily an easily identifiable source. A tumor may be gone, but pain remains, and it's hard to know why. the researchers call his "invisible suffering," and it's a complex thing.
Second is what the researchers call "the opioid paradox." Opioid pain killers can be very effective. But at least in the U.S., we have a large societal problem with opioids, with them being over-prescribed for some patients. So some doctors are anxious to get their cancer survivor/patient off of opioids, to avoid possible addiction. But then doctors assume that because a patient is not on pain medication that everything must be OK. And that's the paradox -- pain is better management when you do something "bad" and pain is worse when you do something "good."
Third, oncologists are not pain management specialists. They're great at helping patients who are in active treatment, and less great when treatment is done. So it's often up to patients to figure it out themselves.
The researchers conclude that the research might help make this situation better in several ways: first, pain management has many different sides to it, and will need many different solutions, not just for all patients, but maybe for each individual patient. Second, there needs to be better communication between patients and doctors and other supporters. Finally, doctors need to know more about pain and its management, and to develop skills to better help patients.
How does all this affect us as patients/survivors? (And let me remind you that I have as much expertise in palliative medicine as I have in oncology, which is to say Zero.)
I think (and again, this is my opinion) that most of us should pay more attention to whatever Survivorship resources are available to us. If you are seeing an oncologist that is affiliated with a large hospital, check to see if they have a Survivorship program. Lots of them do. If you see an independent oncologist in a clinic, ask if they have resources they can recommend. Most do -- they can recommend a social worker or counselor that works with cancer patients, or can recommend a pain management specialist. If you are hoping to avoid more medication, lots of Survivorship programs can recommend other options, like yoga, or acupuncture, or massage. A good Survivorship program will be open to all of those possibilities.
What strikes me most about the research in this article is the emotional aspects of all of this. Especially the guilt.
I've written about this before. I think guilt might be the most destructive but under-recognized emotion that Follicular Lymphoma patients have to deal with. Lots of us can feel guilty for having a cancer that doesn't need treatment right away, or for not needing as aggressive treatment as patients with some other cancers. We don't need more guilt that comes with needing help once treatment is over. There's no reason to suffer when help is available. Nobody deserves to live with pain.
So I hope some of you will look into the kinds of resources that are available to you, even if you don't need them right now. It's nice to know that they are there if they are needed in the future.
You certainly deserve the help.
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