Risk Vs. Worry

You get cancer, get treated, and they say 'here, go on with your life'. (That last part is so helpful! NOT.) Somewhere in the middle of all that treatment crap, they give you all the numbers about statistics - which,as the patient, we interpret wrong. If they say you have a 99% chance of living five years, all us patients put ourselves into the 1% who are not going to make it. (And we ignore the fact that the entire 99% could be hit by a bus at any time.)

Over at 'The Big C and Me', I read today's post by Renn about 'Five Years and Counting' and she included the American Cancer Society's statistic about survival rates for stage II breast cancer. Then I read this post about cancer people mis-interpreting risk and worrying too much - When Does Worry Outweigh Risk. The article starts with:

"For patients with breast cancer — even after treatment — worries about risk are common. Patients wonder, could the cancer come back? Will it spread throughout the body?"

Obviously whoever wrote this has never had breast cancer. Of course we worry, its cancer. Anyway, some research was done and they found after talking to 1000 women with breast cancer diagnoses behind them and found:

"They found 36 percent of the DCIS patients and 25 percent of the low-risk patients substantially overestimated their risk of distant recurrence.

Women who overestimated their risk were three times more likely to report worry about recurrence. They had higher distress scores and lower mental health."

This surprises them? Anyway, go read the whole thing here. They go on to talk about how patients need to understand the differences in risk - when is it low and when it is higher and the difference between local (won't kill you) and distant (the bad kind) recurrences. How patients need to talk to  their doctors more about this and learn about all this so they don't end up with 'higher distress and lower mental health'. 

(These people clearly do not have breast cancer. They don't understand us.) We had cancer and we are going to worry. We just need to learn to manage the risk 

I have had cancer twice now and I do worry about the risk. I had cancer once and my worst fears came to pass when I got it again. So now I am not supposed to worry about getting it again? How's that going to happen?

I'm going to work on worrying that risk thing again still so I don't have 'higher distress scores and lower mental health'. I have a therapist and one of my supposed diagnoses is 'post cancer depression'. When I get past the depression for the first cancer, I'll work on the depression for the second cancer. But I will work on it.

How long - what every cancer patient wants to know

At every cancer diagnosis, one of the first thing every patient wants to know is "How long do I have?". (If you didn't wonder, there is something seriously wrong with you in my opinion.)

And they never really tell you. You go look up the statistics and find out the five year survival rates - which are always based on what was standard of treatment then and not now. You can over think all the averages to figure out your own expiration date. You ask your doctor questions - I once asked my oncologist what my odds were (after a lot of deep thought and gut wrenching decision making) and got some nice vagueness that didn't mean squat.

Doctors seemed to be trained not to give you a solid answer. Someone posted a link to this article by a self described 36 year old non-smoking neurosurgeon who was recently given a nasty cancer diagnosis. I read it and a lot more makes sense.

The patient/doctor clarifies about what the doctors are trained to say:

"My standard pieces include “it’s a marathon, not a sprint, so get your daily rest” and “illness can drive a family apart or bring it together — be aware of each other’s needs and find extra support.” 

I learned a few basic rules. Be honest about the prognosis but always leave some room for hope. Be vague but accurate: “days to a few weeks,” “weeks to a few months,” “months to a few years,” “a few years to a decade or more.” We never cite detailed statistics, and usually advise against Googling survival numbers, assuming the average patient doesn’t possess a nuanced understanding of statistics."

"In brain-cancer research, for example, while the numbers for average survival time haven’t changed much, there’s an increasingly long tail on the curve, indicating a few patients are living for years. The problem is that you can’t tell an individual patient where she is on the curve. It’s impossible, irresponsible even, to be more precise than you can be accurate."

It is true that we can't expect a doctor to pinpoint our expiration and then we cannot expect them to give an answer with any sort of specificity. But we still ask. Because we still want to know how long.

More numbers again

Yesterday afternoon I went for a six month follow up with my oncologist. I realized in the morning that I should have some questions to ask her. I mean why see an oncologist if you have no concerns? So I had to think.

After some deep thought I came up with issue number one - what about staying on Femara longer? New research has shown that longer is better in terms of preventing recurrence of breast cancer. I did not see her in person on my last visit to her office as she had the flu but I had spoken to her afterwards.

Then I decided I needed the big question answered. What is my prognosis for recurrence? I did ask my previous oncologist this once right after treatment ended, before he moved on to research. But that was five years ago and I haven't asked for an update. Why not? It is a big question but I figured I should know. Why have I gone through all this treatment and follow up anyway?

After pondering this for a few hours, I decided this was it. When I met with her, we discussed me and Femara first. The real issue is that I am handling it well - particularly my bone density has been stable which is a big criteria. Its one thing to prevent cancer recurrence but another thing to give you osteoporosis in the meantime. But my bone density is stable so its a go.

The added benefit of additional years of  Femara is seen in the ensuing years. So if I take Femara from 2010-2015, I will continue to see the benefit in 2015-2020. I can live with that.

My next question I think was a bit of a surprise for my oncologist but I did ask her what is my likelihood of recurrence. She said its probably less than 10% at this point based on my diagnosis specifics and treatment. I thought that wasn't bad.

But I immediately went home and looked up breast cancer statistics and see how I compared. A normal 50 year old woman has a 2.38% chance of getting breast cancer in the next ten years. But I have already skewed the odds that say a 40 year old woman has a 1.47% chance of getting breast cancer by age 50.

So its all a bunch of numbers but I can't let them mean much to me.

But the best news is I don't have to go back and see her again for a year.

Spinning Statistics

Of all the nerve, two professors have dared to criticize the Komen Foundation for the Cure for spinning mammography statistics in a campaign last October. David takes on Goliath and Goliath (a/k/a Komen for the Cure) replies with screening saves lives. Well yes we can't dispute that but we can disupute this which is taken from their ad last fall:

"early detection saves lives. The five-year survival rate for breast cancer when caught early is 98%. When it's not? 23%."

So somewhere in breast cancer statistics I am sure there is a 23% survival rate but just because you don't have regular screening doesn't mean  your cancer won't be caught until its stage IV and you get that 23% survival rate. But let's not spin the numbers here. Are they trying to scare women  into having mammograms instead of educating them?

Part of marketing is taking the features and benefits and writing about them. The feature here is regular mammograms can catch cancers earlier. The benefit is better odds for survival.

I write marketing stuff for a living. My copy writing skills might be slightly impinged by the early hour but I think I can do better than them and not mislead anyone. Perhaps they should have said something like:

Early stage breast cancer has a five year survival rate of 98% and late stage breast cancer can have a five year survival rate of 23%. Regular mammograms will help any cancer to be caught early.

Hmmm... Kudos to the professors. A big thumbs down to Komen.

Mammograms and statistics

The AMA has said (finally) that yearly mammograms should start at age 40. Back in 2009, some group of rocket scientists recommended they start at age 50 for women with normal risk factors. That started a big 'To-Do' and everyone (and their brother) had an opinion. They have joined the ranks of the American College of Obstetricians and Gynecologists; the American College of Radiology; the American Cancer Society; the National Cancer Institute; and the National Comprehensive Cancer Network who also say 40, unlike the rocket scientists.

So maybe the AMA is a bit slow here but its nice to see them on the bandwagon with everyone else promoting something that's common sense.

Especially since it has been learned that women who work night shifts are between 30 and 40% more likely to get breast cancer. This last set of statistics proves two things:

1. Lots of things cause breast cancer so we all have a higher risk and therefore all women really need the mammograms.
2. It is possible to reach analysis paralysis with breast cancer statistics, just like any other kind of statistics.

That's enough for today. I'm going to the beach.

Statistics dont tell the whole story

I have been very happy and comfortable with the quality of my health care. I live near Boston the home of many world class hospitals and the quality of care available in the area is very good. Or so I thought. HealthGrades.com just released their latest list of top cities for health care. So I wanted to see where Boston was on the list. Its not. Neither is New York City.

I was surprised to say the least.Then I started thinking - a very dangerous proposition at times. This is a classic example of how statistics can be misleading. These numbers are looking at the level of care across an entire metropolitan area. While this includes the leading hospitals, it also includes small and large medical centers that may be underfunded or serving a sicker population who are going to have statistically worse than expected outcomes due to their overall health.

So I went through and looked up where I am treated and feel slightly better. Then just for the hell of it I looked up Dana Farber. They have all sorts of physicians listed, many of them have no ratings. And they had no surgical procedures listed. Hmmm.... So what is their rating? I don't know.

More advice on statistics. Ignore them.

Numbers and research

Numbers and statistics are the backbone of medical research analysis. I am not a statistician by any stretch. I took a statistics class in college to meet a distribution requirement. After college I took a summer class at the little college down the street, Harvard, where it didn't matter if we had the numbers right (we took a vote - if everyone thought that 47.3% of 6,329,145 was around 3,000,000, we used 3,000,000) because it was the principle of the process. We needed to focus on learning the importance of how the numbers are determined and how to figure out their significance.

Another big part of statistical analysis is ensuring the numbers that are being analyzed are what you think they are - that if you think you have a pool of people who were born west of the Mississippi between 1950-1960 and now live in Florida, that you don't have anyone from Connecticut in it as that would skew your data. And that the same information was collected from all of them so you are not comparing apples and oranges. You want to compare red apples and red apples, not red apples and slightly yellow apples.


Here's an example of data being reanalyzed and people saying well maybe not but maybe yes. In 1995, the million woman study was started in Great Britain to compare diet and lifestyle and health factors such as cancer. One significant result was the link was seen between Hormone Replacement Therapy and breast cancer. Then everyone stopped HRT and breast cancer rates went down so the proof is there. But now there are claims of shortcomings and lack of causality. The new claims are: 'HRT may or may not increase the risk of breast cancer, but the MWS did not establish that it does...'

But still '"This report would not change how I counsel women, as multiple studies, including a randomized trial, have shown an increased risk of breast cancer from combination hormone therapy," Kathy Helzlsouer, MD, director of the prevention and research center at Mercy Medical Center in Baltimore...'

So where does this leave us? Somewhat doubting this one study but based on the findings of other studies and the drop in breast cancer diagnoses, we can still state it was correct.

Reading between the lines

This blog post made me think about the importance of reading between the lines. Dennis Hopper died from a supposed slow growing cancer. Hmmm... If its slow growing, why did he die so young? Prostate cancer is one of those 'good cancers'. I had two so-called 'good cancers' (and if you say they are good to my face I might smack you silly) - you know the kind that you are told 'if you had to get any cancer that's a good one'. Hah! There is no such thing as a good cancer. (I will say my now retired dentist did make such a comment to me about my breast cancer and we did laugh about it - because he said it in the right way and he also had cancer. People with cancer get special dispensation to say cancer things to other people with cancer as they really understand.)

When you are given those lovely words 'you have cancer', 'its malignant', 'its positive' or some such life changing phrase, among the many things you probably do is go look at all the numbers as well as get a lot of medical advice. The numbers may tell you one thing and the different medical advice, some different things. This is where you need to read between the lines and figure out where the truth really lies.

The stark reality of the numbers doesn't tell you the whole story. They give you the five year survival rate by stage and tell you how to stage your cancer - or what stage you want to be in. But if it says 80% are alive at the end of five years, 20% are not. But they don't give you that number, you need to do the math in your head. Somehow by only putting the positive number its supposed to minimize the impact. Even when the five year survival rate is less than 10%.

Then your medical advisers don't tell you the whole story either. They can project what they expect. They can provide you with a plan of care.They can tell you in nicely couched phrases their opinions of your prognosis. But are they going to come out and say something like 'you have an 80% chance of being here in five years' or 'you have a 20% chance of not being here in five years'? No. Never. I flat out asked my oncologist about my chances at one point. He did give me a fairly clear answer that was relatively positive. It took me a while to get up enough guts to ask that one.

But as a patient or bystander, you have to compile all the information together in your head and start deciphering the pile and figure out where you are, where you want to be, and how you are going to get there. You can't just go by the numbers - the 'good cancers' kill people each year as well as the 'bad cancers'. This means that while some people don't make it when they have a relatively good prognosis, other people with a bad prognosis live for years or even decades.

All the medical advice and statistics are based on averages. Averages are the same thing that give us baseball pitchers with a low ERA who walk three batters in a row or soccer goalies who miss that single (but very critical) goal in the season. They give us expectancies based on past experience. But they don't always predict the future.

What is this 1 in 8 business?

1 in 8 is the most over used and misused breast cancer statistic ever. And now it is popping up again. First of all those who have the 1 in 8 chant going in terms of chances of getting breast cancer in your lifetime should understand that the risk greatly increases as you get older. Breast cancer is much rarer in your 30s and 40s.

This is from the National Cancer Institute's website:

"The estimated probability of being diagnosed with breast cancer for specific age groups and for specific time periods is generally more informative than lifetime probabilities. Estimates by decade of life are less influenced by changes in life expectancy and incidence rates. The SEER report estimates the risk of developing breast cancer in 10-year age intervals. These calculations factor in the proportion of women who live to each age. In other words, they take into account that not all women live to older ages, when breast cancer risk becomes the greatest.
A woman’s chance of being diagnosed with breast cancer is:

• from age 30 through age 39 . . . . . . 0.43 percent (often expressed as "1 in 233")
• from age 40 through age 49 . . . . . . 1.45 percent (often expressed as "1 in 69")
• from age 50 through age 59 . . . . . . 2.38 percent (often expressed as "1 in 42")
• from age 60 through age 69 . . . . . . 3.45 percent (often expressed as "1 in 29")

These probabilities are averages for the whole population. An individual woman’s breast cancer risk may be higher or lower, depending on a number of factors, including her family history, reproductive history, race/ethnicity, and other factors that are not yet fully understood."

But now this 1 in 8 odds is popping up in terms of the number of women who can really can attribute their annual mammogram to saving their lives:

"In an analysis published this week in the Archives of Internal Medicine, researchers at Dartmouth estimate that only about 1 in 8 women whose breast cancer was identified during a routine mammogram actually owe their lives to the screening."

This is from an article which covers the debate on the benefits of annual mammograms again. First of all, do we need to cover this topic again and again and again? Give it a rest. And how can you tell a woman whose breast cancer was found in a mammogram that she would have found it early enough to save their lives? My tumor was found on an annual mammogram when I was 45. I probably would not have found it myself. I had a physical with a breast exam about a month before my bad mammogram and nothing was detected. So would I have been able to feel it a year later? I already had one positive lymph node. 

But I digress, 1 in 8 is a misused statistic. And what it also says is that 7 of 8 women will not get breast cancer.

Statistics

You get cancer and you have to learn about statistics. I took a statistics class in college and then another one at Harvard Summer School. I did pretty well in both - well obviously or I wouldn't have taken the second one if I failed the first one.

But then I never could figure out this risk reduction business and cancer. It is so confusing. But here someone explained it in a way my little tiny brain can understand. Too bad I won't really remember it because of chemo brain and will have to go back and reread it all the time.

In case you didn't understand yesterday's post

They had to explain the 'breaking news' from yesterday with another article. Basically, it only effects treatment for 20% of newly diagnosed cases each year. If your cancer had not spread and was in situ, it doesn't pertain to you (60%). If you cancer has already spread to other parts of the body (5%), it doesn't pertain to you. Then (using their crazy math), 33% of cases where cancer might have reached the lymph nodes. Where I went to school, 20+60+5+33=118%, not 100%. I guess the message is that it only affects some people.

Maybe there will be an article explaining yet another new math we all have to learn. Or no, maybe this is a case of skewed statistics that I mentioned the other day.

But last of all, from what I can figure out, I still would have needed the surgery I received. But I guess I still can add.

Statistics and diseases

Back in college, I had to fulfill distribution requirements, meaning I had to take classes in different areas - the only one I remember, possibly because it horrified me the most was to take four classes in math and sciences and two had to be lab sciences!!!! I took Physics for Poets (yes really, it was a liberal arts college - Beloit College) and I blank out on the other but for math, for some reason I took calculus but then I took Statistics. Which I actually enjoyed. I remember one assignment to find a newspaper or magazine article which showed a skewing of statistics.

After I graduated I went to that little college down the street for their extension school where I took another statistics class. Then I started working in marketing where I learned how to put spin on anything. Including how numbers are bent and spun in circles a thousand times to put the desired slant on them. The numbers are real but its their interpretation that is dizzy and crying to get out to have the truth revealed.

Scientists report the life time risk of getting a disease is one in 30 or whatever. But if most people get the disease over the age of 80 with 80% of the cases occurring in the population over 70 you shouldn't think I'm going to die but that if I live to be over 70, I have a good chance of getting it. That's a made up example for an imaginary ailment but let's take the real example of breast cancer.

The peptobismol pink chant for breast cancer is one in 8. As in did you know that one in 8 American women will get breast cancer? OMG!!! This is supposed to inspire people to run to their wallets and send money for pink things. Well, a little more information behind those 'shocking' numbers is from the National Cancer Institute. Yes there is a life time risk of getting breast cancer of 1 in 8 but the probability of getting the disease is:
"A woman’s chance of being diagnosed with breast cancer is:

* from age 30 through age 39 . . . . . . 0.43 percent (often expressed as "1 in 233")
* from age 40 through age 49 . . . . . . 1.45 percent (often expressed as "1 in 69")
* from age 50 through age 59 . . . . . . 2.38 percent (often expressed as "1 in 42")
* from age 60 through age 69 . . . . . . 3.45 percent (often expressed as "1 in 29")"

And it increases over the age of 70. So if you add up all these numbers, spin them around a few times, blah, blah, blah, you get 1 in 8.

In other words, don't believe everything you read and take them with a huge grain of salt (accompanied by a margarita or six) when offered by a marketing guru. If you really want cancer statistics look elsewhere and read the fine print.