Monday, July 28, 2014

Follicular Lymphoma's Improving Survival Rate (in Europe)

Still easing my way back from two weeks in the U.K, so let's talk about Europe....

The Lancet Oncology published an article a couple of weeks ago that looks at improving survival rates in Europe. Good news -- Follicular Lymphoma survival rates are improving.

The study looked at data from 30 cancer registries from 20 countries in Europe. Using that sample, they did some statistical analysis, and found that most blood cancers had improved survival rates from 1997 to 2007. For Follicular Lymphoma, the 5 year survival rate for 1997-1999 was 58.9%; that went up ten years later to 74.3%, the second best improvement for the diseases being measured (behind only DLBCL). They found that Eastern Europe lagged behind the rest of the continent, but all other regions of Europe improved.

Their Interpretation reads as follows: "These trends are encouraging. Widespread use of new and more effective treatment probably explains much of the increased survival. However, the persistent differences in survival across Europe suggest variations in the quality of care and availability of the new treatments. High-resolution studies that collect data about stage at diagnosis and treatments for representative samples of cases could provide further evidence of treatment effectiveness and explain geographic variations in survival."

So, clearly, improved treatments account for the great bulk of improved survival. It's no coincidence that they measured at the start of the Rituxan Era, and more targeted treatments continue to be introduced. It's certainly possible that the same cohort, if measured in 2017, would come out even better.

Of course, this is a measure of European blood cancer patients, so it isn't necessarily comparable to the United States (where I have an obvious interest), but my guess is that survival rates have made similar improvements in the U.S. over that time. (I know statistics like that are out there, and I've probably written about them at some point, but I'm too lazy to look them up right now.)

I see two big lessons in this study.

The first has to do with the authors' comment on Eastern Europe. They say that treatments like Rituxan and Velcade are approved across Europe, but access is less common in Eastern Europe. This might explain the lower survival statistics. I think there's a lesson there for the U.S. -- better access to treatments might be more common for lots of people who couldn't afford them until a few years ago, when health insurance reform allowed for better access. It would be interesting to see survival statistics in a few years with that factor in mind: will survival numbers increase not only because we have better treatments, but because more people can actually use them?

The second lesson is related to the first: Statistics don't tell the whole story.

We know that, of course, but we sometimes forget that statistics are made up of individuals, and not all individuals are alike. So we can look at a statistic about survival, and assume that everyone in some sample of 1000 Follicular Lymphoma patients is just like us. But, of course, they aren't. They are of different ages, they live different lives, they have different genetic make-ups -- and they have different access to treatments. A 70 year old Polish woman does not equal a 40 year old Italian man. Not everyone is going to be just like me. (Very few will be as handsome, for example....)

It's yet another reason to look at statistics with a critical eye. We often look to statistics to make ourselves feel better, and sometimes that doesn't work, and the numbers we read just make us feel horrible. And if that happens, remind yourself that a group of random strangers doesn't say anything about who you are and what you need.

Then go have some ice cream.


Sue Campbell said...

I was diagnosed with Stage 4 Non-Hodgkins Follicular Lymphoma in 2004. I was put on a list at Princess Margaret Hospital in Toronto,Canada for a bone marrow transplant and at that time they gave me 5 years without the transplant. Well it's 2014 and I'm still here, I have had many rounds of Chemo with Rituxan and a year of Maintenance Rituxan and I'm sure that is what has kept me alive, Susan Campbell

Lymphomaniac said...

Woo hoo! 10 years! I love those numbers, Susan. Keep up the good work.

Anonymous said...

I am diagnosed with fnhl in the beginning of this year. I felt so alone in this fight as fnhl seems to be so rare. Your blog gives me hope. I am from a small town and I read it everyday to see what new steps are being taken in the world to conquer this dreadful disease. Thank you so much for keeping my hope alive I need it for my kids.

Lymphomaniac said...

Thanks for reading! I'm glad I can do something to help. I know it seems rare, but there are lots of us (too many, really) dealing with the same thing as you. I hope that knowing that makes it easier in some way. Keep the faith -- there is so much for all of us to be hopeful about. And feel free to check in any time if you're feeling down.