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When you receive a terrible medical diagnosis, you may turn to statistics to try and figure out what this means for your prospects--your possible survival. Statistics can be very useful, but remember: statistics are about groups. You are an individual.

This diary isn't so much about hope, as about denial. I believe in finding out the facts, and then setting my mind to do what I have to, to keep going. I've been lucky, and I hope you are too.

I originally had a very small, early-stage breast tumor back in 1996. The treatment was local--simple, limited surgery ("lumpectomy"--a nice combination of vernacular and technical), and 6 weeks of radiation. I was "successfully treated"--one of those "survivors" who put bumper-stickers on their car and march happily in annual fund-raises for "the cure"....

But 11 years later, in 2007, I developed breathing trouble, and found that the original cancer had in fact spread, or metastasized, to my lung sac, chest wall, and several bones. At Stage 4, metastatic disease, there is no "cure"--only treatment to try and push back the disease, to hold if off as long as possible.

Long story short, I had several months of pretty brutal chemotherapy, and have been receiving a comparatively benign drug regimen ever since, including intravenous infusions every three weeks...and shots every month...pills every day....

As a scientist, I've always felt that information is of central importance. You find out something--you may love it, or hate it--but a fact is a fact. This is reality. As this story developed, I knew that my prospects for long-term survival were pretty terrible, but I wanted to find out as much as I could about my particular disease state. And so I read everything I could find about my clinical condition, and I turned to statistics....

Early on, I stumbled across some interesting graphs, which I circulated to my family with a textual explanation that combines the numerical facts with a dose of possibly unjustifiable optimisim--I call this "informed denial." I've been updating this narrative as time passes...and passes....

These two graphs are from the National Cancer Institute / Surveillance Epidemiology and End Results (SEER) web site (although I haven't been able to find them lately) and are based on a large amount of data reported for cancer patients during the years indicated in the titles.

Relative Survival Rates by Stage at Diagnosis For Breast Cancer, All Races, All Ages, Females; SEER 9 Registries for 1988-2003
OK, with my Stage 4 diagnosis ("distant"=metastatic), I am the green diamonds on the rather sadly plummeting bottom line. The median survival after my diagnosis is 2 years—pretty grim. But that’s only 50% of my group who are doomed at 2 years—and as it’s been longer than that for me, I’m obviously not in that bunch. Some people have a bad disease at diagnosis—multiple tumor sites in lungs, liver, brain—and they don’t live long. I had only a very few sites…minimal visceral involvement, and no brain/spinal cord metastasis....

And, although the survivor line plunges down at first, it begins to level off after a while, suggesting the presence of a base group of people who live for a loooooonnnnnnnnggggggg time. Why, at 10 years after diagnosis, more than 10% of my group is actually still alive! Is there any reason why I shouldn’t be in that 10%? Why not!

Now, for something similarly interesting—conditional survival rates. This means, for a group that survives X years, what percent of them will live another 5 years? The next graph shows these patterns for the different groups.

Conditional 5-Year Relative Survival Rates by Stage at Diagnosis, For Breast Cancer, All Races, Females, All Ages; SEER 9 Registries for 1975-2003
Isn’t it nice to see the curves pointing up, this time?  It looks like the longer you live with this disease, the better the chance that you will continue to survive. Seems logical to me—and this pattern is especially noticeable for the “distant” (green diamond) group members, who have the lowest survival to begin with.

Since we’re among friends (please forget for a moment what I said about statistics in the opening), we can loosely interpret these group survival percentages as probabilities that an individual person in the group who survives the “conditional period” (X years) will survive another 5 years. That is, having now lived more than 5 years after my diagnosis of metastasis, I can claim that I have about a 50-50 chance of making it to 10 years. And if I make it 10 years, the chance is almost 75% that I’ll be around for another 5. Sounds good to me!

Again, this graph suggests that for metastatic breast cancer, “distant” (green diamond) survivors, there is a core who are going to make it for a long, long time. Whatever the odds, I intend to be in that core. Last year, my disease kicked up a bit, with a rising tumor marker in my blood test, and I had to add a treatment of monthly shots...but so far no new tumors detected. You just have to deal with each step and move along. You get used to it.

I wish the same for you--whoever you are--who may have a "terminal" diagnosis", of any kind--remember, statistics are about groups of people; and you are an individual. Learn, accept/deny, and hope, as you see fit.

Good luck, and take care.

(Cross-posted with updates from http://ukulelekatie.blogspot.com/ and dedicated to TeacherKen)

Thu Jan 31, 2013 at 3:15 PM PT: Thanks SO MUCH for the wonderful (((hugs))), comments, recs, and spotlight! I have been very down about my bad "numbers", and this helps a lot....

Originally posted to Chantez les Bas on Mon Jan 28, 2013 at 08:22 AM PST.

Also republished by Monday Night Cancer Club and Community Spotlight.

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