Happy World Lymphoma Day! I've already mentioned that this is Lymphoma Awareness Month, but today is officially the day dedicated to Lymphoma Awareness.
The Lymphoma Coalition, which is a world-wide group of national Lymphoma advocacy groups from many different countries, points out this this is the 20th year that they are sponsoring this day. Their theme for this year is "Honest Talk: It's Time for Some Honest Talk about How We're Feeling." They want to focus this year on the emotional aspects of being a patient with lymphoma.
If you've been reading for a while, you know how I feel about this. As I like to say, with Follicular Lymphoma, many of us are asymptomatic or have symptoms that are stable. So for those patients, it's more about (or just as much as) dealing with emotional side effects as it is about physical side effects.
The Lymphoma Coalition offers some resources and suggestions for starting a conversation about being a patient. It can be awkward. As many of you probably know, sometimes people don't want to talk about it -- including the patients themselves. But talking can be a huge help.
Take a look at what the Lymphoma Coalition suggests.
For this Awareness Day, I want to share a link to a recent broadcast of Yale Cancer Answers. This is a weekly radio show on a local station, sponsored by Yale Smilow Cancer Hospital, and features interviews with folks from the hospital and from Yale medical school talking about issues related to cancer. The topics range from the latest in individual cancer types to broader issues like financial toxicity or healthy eating. Yale Smilow is my cancer center, so I'm particularly interested in the show, and I check n often to see if they have done an episode that I can relate to.
The episode I want to link to is called "Improving Quality of Care," featuring an interview with Dr. Scott Huntington. Dr. Huntington is a Lymphoma specialist, and the first half of the interview focuses on his work as a hematologist. He gives some basic information about Lymphoma and about current treatments, especially CAR-T. He recognizes how important CAR-T has become, but also that it is imperfect. As much as we hope to improve first-line treatments for lymphomas (not just FL), for now, CAR-T seems most useful as a "back up" for initial treatments, especially for more aggressive Lymphoma types.
He also touches on Survivorship issues, something that I am obviously more and more interested in lately. He points out in particular that cancer survivors need t pay more attention to things like heart-related issues and making sure to do cancer screenings that are age-appropriate.
The second half of the interview focuses on quality of care (Dr. Huntington is the Chief Quality Officer for the hospital, so his job is to evaluate and improve the way care is given to patients.)
One of the issues that he discusses is how Guidelines are created to make sure patients get quality care. There are groups like NCCN (the National Comprehensive Cancer Network) that use data to make sure the best care decisions are being recommended.
However, as good as those guidelines might be, each individual patient is different, and their disease, their circumstances, and their desires must all be taken into account.
The conversation turned to what the quality of care might look like five years from now. Dr. Huntington talked about electronic health records. For now, they're useful to us as individuals. But maybe soon, all of that data could be useful to researchers -- going through thousands of electronic records can show patterns that might help improve care. Same with the feedback we give as patients, through our phones or our portals. Or maybe more of us use wearable devices, and that data helps doctors see where we are having problems (more accurately than we might report it at a visit to the doctor). It's interesting to think about. But it seems inevitable that technology will play a bigger role in our lives as patients in just a few years.
So I encourage you to listen to the radio show/podcast, and browse through the others to see if there are topics that might interest you. It'd all very much for a general audience, not experts (unlike some other things I link to), with good practical advice.
And enjoy World Lymphoma Day today (or, if you're reading this later, enjoy THAT day). Have some ice cream or some other treat. Or take a walk. Or read a book. But do something that makes you happy. It's your day today.
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