Ignore the Statistics

Once again I have been faced with explaining that a 3% death rate does equal a 97% survival rate. Often cancer patients are given numbers which they do not understand and they focus on the bad part.

First of all, you are not a number, you are a human being.
Second, numbers are generalizations.
Third, numbers should be ignored.

Finally, if you must look at numbers look at the positive side of them. Its not a 5% death rate, its a 95% survival rate. That sounds much better.

Sheesh....

Math Class is Important In Determining Your Cancer Prognosis

Who knew math class would be so important later in life? Here's the problem: You get a cancer diagnosis and your doctor starts spouting numbers at you. You survival rate is this, but if you do this treatment it could be more like this. All of us sit there in a daze looking at the numbers and blindly staring at your doctor and trying to make a decision.

If you are lucky, your doctor says 'take all these numbers with you and go home and think about it'. If you are unlucky you forgot all the math you ever took and can't decide if a 60% survival rate is better than a 40% death rate. And if you are afraid of math, skipped too many classes, or just hate numbers, you get really stuck.

However we have now medical research to the rescue as this is has become a recognized issue:

"Many of the toughest decisions faced by cancer patients involve knowing how to use numbers – calculating, evaluating treatment options and figuring odds of medication side effects.

But for patients who aren't good at math, decision science research can offer evidence-based advice on how to assess numeric information and ask the right questions to make informed choices."

So there is a bunch of research that was done and you can go read it all. In my mind, what it boils down to is this (and write everything down):

• Ask your doctors for the numbers
• Ask them to explain what they mean without using numbers - is this better or worse than average?
• Ask about the risk in real numbers, not just in comparison. If something is 0.3% and its doubled, that is still a low risk. 
• If there are too many numbers, ask your doctor to tell you what are the two best options and base your discussion and thought process on those.

Finally, take a number friendly person to go with you and explain all the numbers to you.

And stop worrying about all those missing math classes and forgotten algebra so you can help yourself determine the best treatment protocol for yourself.

Its a bunch of numbers

With a cancer diagnosis you get a bunch of numbers. Prognosis, cancer markers, statistics, blood counts, and more. The numbers can tell us good things and bad things. We can read bad things into good numbers and good things into bad numbers. We can be told that we were too young to get that or too old to get this. We can let the numbers scare the crap out of us.

Or we can let them just be numbers.

I am not normal. I got thyroid cancer when it was very rare - approximately 10,000 cases annually. I got breast cancer when I was younger than expected. I have Rheumatoid Arthritis which was not expected - even with a family history of it. According to the numbers I should be more likely to get a different autoimmune ailment.

I have friends who got early stage cancer diagnoses with relatively rosy prognoses who are no longer with us. I have a friend with an ovarian cancer stage IV diagnosis who is still with us and doing well more than three decades later. I have friends who are still here after stage IV diagnosis who go to treatment, get periodic CT and PET scans and are doing well. I have other stage IV friends who are doing just fine and are not in treatment. I have many friends years and decades after a cancer diagnosis who are still doing fine.

I met another woman online this morning when I read her story about how she shouldn't be here either if she listened to the numbers. Our doctors can only tell us the numbers, but they can't tell us our lives.