Tuesday, September 27, 2016

Advice on Watching and Waiting

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 
watchful waiting."

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.


Anonymous said...

I am now in my sixth year of watch and wait, have had no treatment, or symptoms that would suggest treatment should be started. At my last scan my lymphoma had regressed or wained, which as you are aware is not that unusual with follicular lymphoma.
To quote my haematologist/oncologist, if I started treatment now they can only make me feel worse.
I find the longer watching and waiting continues, the easier it gets and the more you want to delay treatment for as long as possible.
A couple of recent clinical studies seem to suggest that 80% of follicular lymphoma patients will die of something other than their lymphoma and could live for over 30 years. If that is the case, I think there is a strengthened argument for delaying treatment for as long as is safe, in anticipation of less toxic treatment options on the horizon, bearing in mind the serious risks involved with most of the current treatment options.

Anonymous said...

I was a nervous wreck. Same thoughts: I have cancer, and I'm not treating? This after a friend just died from lung cancer and a cousin's little boy DX with brain cancer.
I did a ton of reading and came to the conclusion that watching and waiting was best for me. ( grade 1 stage 4).
I did, however, obsess for awhile about my diet and supplements. After speaking with my oncologist, and he told me that " diet won't change the course of this unpredictable cancer " , I stopped obsessing about diet. I did still obsess about my supplements until a month ago when my blood tests showed my counts continue to decrease.

I see the cancer center psychiatrist, am so glad she was available to me.
Anxiety is a huge issue when dealing with this kind of DX and being told to watch and wait.
I'm 2 years since DX, and have an oncology appt in October. Hoping my blood levels are stable, if not, time to discuss treatment, and that is anxiety producing as well.

anon said...

How bad is remission ?

Anonymous said...

Personally my only side effect or symptom is Anxiety. I was treated and went into CR and now it is slowly coming back, which is common. So treatment will be in the future after W&W is over. My onc offered treatment ONLY if I could not handle the emotions that go with W&W. I have Wake & Worry now and then and want to feel all over for nodes. But he said to chill out and there is no need to do that. Now if I get the night sweats and such, well then come on in. We FL pts will be in 3 phases: Treatment, Remission, or W&W. Get used to it.
Yes, Dr. John P. Leonard feels that 80% of the pts will live with this and pass from something else (like Worry). Their focus is on the 20% now and the progress there is ever changing (see CAR-T and improved SCTs). Half the PTs DXed 25 years ago lived almost 20 years....lets think about that. Many are elderly. Many of those that passed did pass of something else. Oh, and Rituxin was not there yet for their initial treatment. Now roll forward a quarter of a century. We are in the immunotherapy era. Living 30 years with this is basically a matter of how old you are when DXed. When I was DXed my friend at work mentioned her uncle with this...he had it for 30 years and was approaching 90. My neighbor had it 15 years ago and took 1 treatment...still in remission.
It is all a matter of perspective. Incurable and Cancer are the words that scare ue. Treatable and Disease should be the focus. We have an indolent disease that is treatable and the treatments are getting better and better. This is not ALS or Alzheimers. Many diabetes pts are treated daily. High BP folks too. This is a disease with which OS is now measured in decades, not months or years like other cancers.
So let's all take a deep breath, chill out, and enjoy today...and Bob's Blog.

Anonymous said...

My husband was diagnosed 3 yrs ago, stil on W and W, last scan reveald a slightly enlarged spleen and lower wbc of 4. Other than that no B symptoms whatsoevev, Onc suggested to delay treatment of R monotherapy until next scan if there wil be progression of disease, hubby feels good generally(as im the one who complains abt minor pains and aches often), he doesnt show anxiety abt his condition ( im the one who has it), works out regularly and very energetic and enthusiastic with his work etc, i wud say w and w is suitable for him - jeanne

Marilyn McConkie said...

WnW is just fine with me. I am more afraid of treatment, that is what gives me anxiety. I was dx in September, after several months of frustrating scary waiting for results. That was the most difficult as I just couldn't get my head round having any kind of cancer. I'm seeing my onco in March for recheck. Fingers crossed that WnW continues.