"How Long Do I Have?"

"How long do I have?"

That's one of the first tings cancer patients ask after a diagnosis. (I think we all know that.) And it would be great to have an easy answer to that question. Or maybe not. Maybe it's better to not know? Or it would only be good if we liked the answer?

Whatever the case, it's a question that we all ask at some point, and the answer we get can have a huge effect on our lives -- whether it's a good or bad answer, or an accurate or inaccurate one.

The company GoodRx set up a website to help cancer patients answer that question. Their hope is that they can give the answer in such a way that it helps patients.

They failed. It doesn't help.

That's my opinion, anyway, and the buzz I see on Twitter from other cancer patients says the same thing.

The site is called cancersurvivalrates.com, and it asks some pretty simple questions -- what type of cancer you're interested in, your gender, age, cancer stage, and when you were diagnosed. For some cancers (like NHL) you can give a sub-type (like Follicular Lymphoma). You are then presented with 5 year, 2 year, and 1 year survival rates.

And all that is good. In fact, my results are good -- above 90% survival for all three of the time categories. They also present it in terms of 10s -- "About 9 out of 10 people survive." That's one of their big innovations -- they think people can understand that better than some other ways of presenting the information.

They also see this as a "conversation starter." Patients should take this information to their oncologists and ask "What do you think about my prognosis?"

There are so many problems with this site.

First of all, an article that describes the site quotes a couple of people who helped develop it. One is a doctor. Based on what they have to say, I think they just plain don't understand patients and the way they think. A patient may very well find this site and ask those expected questions. But then, who is around to provide the answers? If I don't have another appointment for 6 weeks, does that mean I'm turning all of that over in my head, thinking the worst, until I get a chance to talk to my oncologist again? Heck -- I was actually in a hospital the first time I saw statistics like that, and it threw me into a two week depression. I was surrounded by health professionals. But I had been diagnosed a week before -- I was in no position to think rationally about what I was reading. That's when patients are most likely to look at something like this -- soon after they are diagnosed, when they are looking for answers, but can't think straight about what to ask or who to ask.

Then there's the site itself. They say they want to make things simpler for patients, but of course, with something like cancer, "simple" means it leaves out too much. Every cancer patient is different. We have co-morbidities, for example -- other health issues that can affect our survival. This doesn't account for any of that.

Some other problems:

It gives a 1, 2, or 5 year survival rate. For something like Follicular Lymphoma, a longer OS rate would be much more helpful -- something like 10 years.

In entering information, you can give a range from "just diagnosed" to "diagnosed 2 years ago." Nothing longer than that. It's kind of useless for someone like me.

I have no idea if the rates are even accurate. But if they are even just the tiniest bit off, the whole site should be shut down and re-checked.  One woman with breast cancer posted a photo of her results, and it gave her survival rate as "107%." Another had a longer survival at 2 years than at 5 years, which makes no sense -- people don't come back to life after 3 years. Small technical issues make me ask if the information I received is correct. Maybe it's more optimistic than it should be? For a newly diagnosed patient, a worse survival rate than it actually is would be devastating. So would a better one, when they had that conversation with their doctor and found out "the truth."

Were patients even involved in creating this?

And apart from problems with the site itself, there's the whole issue of whether or not patients even understand what survival rates mean. I've written about this a lot in the past -- like I did here -- so I won't get too much into it. But "overall survival" is a complicated thing, and doesn't really reflect much of anything about anyone's individual experience. And since it's a statistic made up of what has happened to other patients in the past, it doesn't reflect what might happen in the future. New treatments are being discovered, tested, and approved fairly quickly. What happens in the next five years might completely change the game for a lot of us, no matter what this website says.

So my advice for all of this?

Be careful about looking at statistics. Some people take comfort in them. Others don't, including me -- the times I have been really depressed about being a cancer patient were all triggered by looking at numbers. Look at this site, if you must, out of curiosity, but don't take it as a final word about anything. Treat like you would treat an internet quiz about which Disney Princess you are. Maybe accurate, maybe not, but something interesting to talk about for a few minutes and then forget.

(And if you're curious, I'm most like Belle from Beauty and the Beast. I love to read, and I look great in yellow.)