"Lies, damn lies and statistics"

maggie_wilson said:

nancygt
thanks so much for your informative, helpful post. i so agree with you re: statistics, and how distorted they tend to be. my medical oncologist had to fight for a first pet scan for me with my insurence company several months ago, they did not tell her of their decision until the very last day, but they did approve it. i'll probably need another pet scan in the next few months, and she seems confident she can get that also approved. we'll see. i had a fresh tissue assay done about a month ago, out-of-pocket $3500!, but we felt it was worth it. and results did show that there were a number of seemingly effective chemo combinations that would work for me, plus some i'd never even heard of. the lab that did the assay sent the bill to my insurance company, and when it returns denied, i will appeal, and hopefully enlist my two doctors to send in letters of medical necessity along with my letter. the lab told me that blue shield, my insurance, has been paying for a few of these assays recently, so that was a little encouraging.

i think starfish may have posted some clinical trials, though frankly, maybe not for upsc. i did see a post by zarka that did contain some clinical trials for upsc, though i didn't make a copy of it. i know her post was within the last couple of weeks. still, so few and far between. at this point, i'll go for the chemos that looked promising for me, if and when i need to do so, rather than look for trials at this point. i'm especially interested in immunotherapy, and other non traditional therapies. at ucsf, there is a doctor john chan who works with immunotherapy and molecular therapy, plus a dr. i chow hsu, also at ucsf, who does ultrasound hyperthermia, which i haven't checked out yet . also, hormone therapy such as progesterone, or progesterone/tamoxifen combination. right now i'm i've been on tamoxifen for a month, and megace was just added less than a week ago. i'll be on this combination until the end of the month; then ca 125 to see if it's made any difference. so, there are other things out there, just takes a lot of perseverance and energy to follow through with them.

best of luck to you. sounds like you have a great doctor; it's always so wonderful to have a doctor that believes in our capacity to way outlive those damn statistics.

sisterhood,
maggie

evertheoptimist said:

Nancy, You and I must be on
Nancy,

You and I must be on the same wavelength. I just posted a very similar stuff this morning (copied below for each reference).

I have a Ph.D. minor in statistics. Nothing wrong with the discipline itself. However, "garbage in and garbage out" applies here. I think since UPSC has such a "short" history as a separate medical condition, and did not receive thorough vetting so far, the data that was used to generate the statistics are not reliable. On top of that, women on this board have much greater odds (my post below explains it). We are several sigmas away from the norm on the right side of the curve. That's why when I saw the grim statistics, I was unfazed. Another factor to consider is, if the stats are based on a sample heavily represented by 75+old think black women, you need to consider what portion of the stats reflect the actual severity of the disease vs. age vs. socioeconomic factors. Let's face it, it was widely confirmed that minority groups traditionally have not fared as well in aggregate (not individually) due to the socioeconomic disadvantages. So, if we control for just these two factors (the mis-represented age, socio economic condition), I bet the stats improve greatly even without considering the new treatment options and what not. We have a ground of rational optimism. Let it flow through you and help you body and mind. Cancer requires all of our resource, and I believe mental and emotional energy and attitude play a big part.

here is what I posted this morning on a different thread.

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One thing I must stress: I am sure that you all know, but anyway.........

The whole statistical number issue: remember that the survival rates are calculated based on the longitudinal observation. As such, you can safely guess that in all likelihood the actual odds of those of us who are posting here (unless you are a long term survivor, in which case you already beat the odds!) are better, perhaps even much better, given the development of new protocol, new treatment modalities, and new drugs, etc. The stats you see are based on women whose initial diagnosis was done, say, close to 10 years ago if not more, when understanding of UPSC and treatment options ten years ago were much more limited than they are now.

Lately, I read about some incredibly interesting development in handling gyn cancers. They will take somre years before they can be deployed for actual treatment. So, even if they say that UPSC late stage cancer cannot be "cured" or that the recurrence rate is high, we don't need to take that at a face value. You don't need to be "permanently cured". You need to survive each recurrence until the medical science develops and catches up. We all have actually much more time to "work with" this disease than what the stark stats tell you now.

Furthermore, those of us who are posting here, researching the options, and possessing emotional, financial, intellectual, and other logistical resources to be active advocates for our own treatment and care are already on the right side of the statistical curve (meaning, way above the mean/median survival odds). Remember that the over all stats include those who started the journey in very poor overall health, much older than we, lacking resources, spirit, and YES, a biggie, access to the best experts (directly or through cyber research).

When I got the diagnosis, the first thing I did was the google search on survival stats. They all came out really depressing. However, it took me all 5 minutes to come to the conclusion that these stats don't apply to me. I reached this conclusion rationally, not out of delusion. I like to believe that I am a rational, logical person. I believe that rationally grounded optimism coupled with a proactive approach and self advocacy create a powerful virtuous cycle, and in the end allows us to beat the "published" odds by a wide margin. After all, there are enough research findings that actually demonstrate that the attitude of a patient is a huge variable.

When I broke the news to my kids (age 19 and 17), I told them all about this and said "this is why your mom is not going anywhere any time soon". These are very bright kids. They will do their own research. When they do that, they will completely freak out seeing the dismal numbers. I needed to proactively debrief them on this - rationally, scientifically, and based on facts.

colorkate said:

carcinosarcoma
Thank you, ever the optomist! January 2011, I had a complete hysterectomy due to a 7 cm tumor in my
uterus. I am scheduled for chemo, after my return to Kauai! Yesterday, I met with the chemo doc and
asked for survival rates and longevity. Then I realized....these numbers mean nothing to me. You mention
reading of some interesting new ways of "handling gyn cancers." Can you refer me to that information?
Thank you.