Over the summer, Cancer Today did a piece on Watching and Waiting in blood cancers called "Treatment is Waiting."I missed this somehow.
Cancer Today is published by the American Association for Cancer Research, which is made up of cancer researchers. They publish a number of medical journals, but Cancer Today is aimed at patients, their caregivers, and their families.
The article is decent. It describes what watching and waiting is, and how and why it is used. The examples are patients with Chronic Lymphocytic Leukemia, or CLL, which is another indolent, slow-growing blood cancer, like Follicular Lymphoma.
The stories are familiar to a lot of us -- someone who is perfectly healthy gets a blood test that comes back a little funny, or notices a lump that won't go away. A few tests, and there's a diagnosis of an indolent blood cancer.Some discussions with the oncologist, and they agree that watching and waiting is the best choice. (The article provides a link with the blood cancers that are likely to involve a watch and wait option.) The article lays out some reasons why this treatment choice makes sense (and a bunch of us have heard them, too) -- the cancer is growing slowly enough that treatment is necessary right away, and holding off treatment means holding off its side effects, too. The article finished with some studies that involve watching and waiting, to see how that decision holds up against some newer treatments.
Like I said, I think the article is decent. And it's easy to wish a writer had a different purpose and made different decisions. But I wish an article in a magazine aimed at patients would have spent more time discussing the emotional aspects of watching and waiting. The focus is on clinical trials because it's from a group devoted to research. And trials certainly are important. But for patients making the decision to hold off on treatment, they need to know and understand that there is an emotional investment in this option. The purpose of the article was not to highlight that, so maybe it's a good time to look at it again.
The article does acknowledge that emotional aspect. One patient whose story is told did remark on how strange it was to hold off on treatment. And there's a link with "Tips for Blood Cancer Patients" that includes "Get help managing the anxiety that can sometimes accompany
Sometimes accompany it? I haven't heard of anyone who didn't have some anxiety. There's a boatload of anxiety that comes with that decision. It makes no sense, to a new patient, to get a cancer diagnosis and then purposely "do nothing about it." It takes a long time to not worry about every bump, every red mark, every cough, when you are supposed to be "watching." It means a lot of lying awake in bed, wondering of you made the right decision, and dreading that you didn't, and panicking over the penalty that you'll pay as a result.
So, yeah, I'd say that some anxiety can sometimes accompany that decision. And I'd say that it's a good idea to "get help managing" it.
For me, as I've said before, that help came from an online support group. The people there had lots of different types of NHL, and even if their experience was different from others', they always had an encouraging word, and they were always there to celebrate the good things. And with hundreds of people there from all over the world, even with all those different types of NHL, there was always someone who did know how you were feeling, and did know what you were going through.
And I talk about the support group in the past tense, because even though I still check in every day, I don't post as much as I used to. Because that's another important thing to know about watching and waiting: at some point, you do stop worrying constantly. You don't stop worrying completely, but you sleep better, and you panic less, and decide that it was the right decision. Someone in the support once said that it takes about 6 months for that to happen. That sounds about right. Maybe a little longer, or shorter. But the worry doesn't last forever.
And if it does? If you just can't stand the idea of watching? Then get some treatment. There's no shame in it. If the oncologist recommends holding off on treatment, there's no rule that says you have to take that advice. There is no consensus in the oncology community that watching and waiting is the best choice. It's easy to find experts that say it's better to just treat right away. If you can't stand the idea of "doing nothing," then do something. Sleep better.
Watching and waiting is, in the end, all about maintaining a good quality of life. If that means holding off on treatment and its side effects, that's great. If it means having treatment and getting rid of your anxiety, then that's great too. It's about having some say in your own treatment and feeling good about that decision.
I'd be interested in hearing about your own decisions with watching and waiting, and how you coped with the emotional side of it all. And I'm sure some newer readers would like to hear it, too.