Sunday, November 22, 2015

ASH: Watching and Waiting

Another ASH Abstract: "Watchful Waiting As Initial Management of Advanced-Stage Follicular Lymphoma in the Rituximab Era: Analysis of the National Cancer Data Base."

If you've been reading for a while, you know that I was diagnosed with Follicular Lymphoma in January 2008, and had Rituxan in January 2010, which meant I had two years (exactly two, to the day) of watching and waiting, so I'm always fascinated by the topic.

I also know it's a controversial one, with lots of evidence on both sides of the controversy: with advanced FL with no symptoms, is it better to watch and wait, or to treat right away (with Rituxan being the typical alternative to W & W). There is new research on this controversy, it seems, once or twice a year, but nothing that really says one is better than the other. 

This study from ASH is a little different. It doesn't try to solve the controversy. Instead, it tries to show just how common watching and waiting really is by looking at trends from the National Cancer Data Base, which includes information for more than 70% of cancer incidents in the United States from 2004-2012. They looked at stage 3 or 4 Follicular Lymphoma that did not have B symptoms, and that held off treatment for at least 100 days from diagnosis.

Researchers found 18,783 instances of FL advanced stage (3 or 4) patients, and about 31% could be called Watch-and-Waiters. The study lays out a bunch of statistics that show how watching and waiting is used, but a few of them are particularly interesting (to me, anyway):

Watching and Waiting was much more common in New England and the West Coast (39%) than other parts of the country (the South, for example, was just 22%). They don't offer an explanation for this, but as a New Englander, I thought it was pretty interesting. The researchers don't speculate why, but my guess is that certain medical schools/residencies favor that approach, and their graduates stay fairly close by. The study also shows that research hospitals use watching and waiting more often than community hospitals, which might back up my guess.

Overall Survival was a little better for watch-and-waiters than those who were treated right away (76.9% vs 74.3%), which they expected. This doesn't mean that watching and waiting  increases your survival chances; it means people with slower-growing FL are more likely to still be watching and waiting after 100 days. The statistical difference goes away when some other factors are included.

Finally, there was no association between watching and waiting and things like median income, type of health insurance, or distance from treatment facility. This is important -- watching and waiting isn't just an excuse for doing nothing because it's just easier and cheaper to do nothing. Instead, it's a legitimate treatment strategy, done deliberately. (Though the researchers do think payment policies in oncology practices might be having an effect on how often it is used.)

So overall, the presentation gives a bigger picture of watching and waiting, even if it doesn't tell us anything new about the controversy over whether watching and waiting is the best approach. As the researchers point out, the National Cancer Data Base doesn't have the kind of detailed information about individual patients that could tell us more about watching and waiting, and (to my delight) they admit that clinical trials about watching and waiting probably aren't going to show any kind of Overall Survival benefit to immediate treatment over watching and waiting. So what we have here is probably as good as it's going to get when it comes to our knowledge about it.

I'd say I still feel the same about my own choice from long ago. I'm glad I chose watching and waiting, and I think others should feel good about the (sometimes difficult) choice as well. 


Marcela( Canary Islands) said...

Hi Bob, I am Marcela in the Canary Islands, I make a return visit here. the theme of the watch and wait is always controversial, I already took from August 2012 and I have not yet received any treatment. My stadium is 4 grado1. But since 2010 it seems that it was there. Making accounts we are already going for five years and I'm still doing my normal life. I go out to run, work, family, singing with my guitar. Life goes on, I like reading you give me lots of encouragement and hope. Since I found your blog I follow faithfully. I am glad to be able to also share my experience here. A hug and thank you for your blog is what helps me most. Have good health Bob! Sorry for my translator.

Lymphomaniac said...

Hi Marcela. Thanks for writing again. I'm so glad to hear that things are going well for you, and you are able to live your life so fully. Thank you for the hug -- I am sending one back to you.

William May said...

Happy Thanksgiving Bob. Since my wife of 46 years has fNHL Stage 4, I appreciate and follow your blog regularly. Please keep up the great work. To carry on the tradition established by Marcela, here is a BIG HUG for you. Bill