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.
I was diagnosed with Follicular Lymphoma (Stage 3, Grade 1 &2) in January 2008. I have been writing this blog since then. After my diagnosis, I watched and waited for two years (to the day). I received six rounds of Rituxan in 2010, and I have not needed treatment since.
I like to call myself a Cancer Nerd – I am not a doctor or a cancer researcher, just a patient who wants to understand as much as I can about my disease, and write about what I find, from a patient’s perspective.
My blog represents my understanding and opinion only. It is not meant to be medical advice.
This blog is not intended to be a source of medical advice. I am not a medical doctor, scientist, or cancer researcher. I'm just a Follicular Lymphoma patient who wants to learn more about my condition and provide opinion and information so you might have a more informed conversation with your own doctor, who is the right person to get medical advice from.