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"Lies, damn lies and statistics"

nancygt
Posts: 86
Joined: Jan 2010

Pardon the language but that is a quote from Mark Twain (who claimed to be quoting Benjamin Disraeli.
At some point I believe that just about everyone on here with USPC was upset with the statistics and had to get past that. I just wanted to point out again the distortion. USPC was only made a separate diagnosis in 1981-1982.With an increase to roughly 8000 cases a year currently, the total statistical base for that 30 year period is probably less than 200,000-one year of breast cancer cases.
Second, if you refer to an article in the Sog as recent as 2009, the average age on their chart was 75 at diagnosis - with a life expectancy for females in the U.S of 80 and a 5 year survival measurement, the math is easy why the stats were so ugly.
I asked my second oncologist at M.D. Anderson what was the longest surviving patient in her practice and she told me 8 years.But she also told me that those longer survivals were becoming more common for many factors:
(1) younger patients with fewer serious health issues outside of cancer
(2)USPC was treated wrong for many of those 30 years and not realized for its differences-especially as respects adjuvant treatment after surgery
(3) New treatments such as IMRT that virtually did not exist 10 years ago and take a while to be reflected in the statistical base
(4) new drugs such as Avastin and herceptin and others
(5) tests such as tissue assays and genetic tests to more carefully target treatment regimens to the individual patient
And then there are discoveries that don't seem to be matched to specific treatments yet but are bound to be over time. One example is that on that SOG chart the typical USPC patient was a thin black woman 75 years old (I often lamented why I could not get the overweight hormonal white womens version of EEC). But the link was not race but the fact that the black women had high levels of P53 as do many USPC patients-while that knowledge has not immediately led to treatment, it has opened another avenue of knowledge.

I asked my own oncologist what he thought about the MDA doc's 8 year patient and he told me he would be very disappointed if he did not get me 8 years or more and I was glad to hear his confidence (although I joked I would be a lot more disappointed than he was if he was wrong).I asked him where he thought the stats were headed and while not wanting to be put on the spot, he said he would be surprised if survival rates did not double over the next 5 years.So it is not wrong to somewhat discount the stats and have hope for more treatment options. But I agree with evertheoptimist that we made need to become more savvy on politics and insurance and pool our knowledge -with the turmoil in healthcare politics, we are still a small, almost rare cancer group and it make take "guerilla warfare" to make sure we get all those treatments,tests,separate stats and separate trials for USPC.

I would love to see any stories on how battles have been fought to get tests approved, to get off label drugs approved, any clinical trials actually seeking USPC patients as opposed to excluding them.

evertheoptimist
Posts: 140
Joined: Jan 2011

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.

**************************************************

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
Posts: 1
Joined: Feb 2011

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.

evertheoptimist
Posts: 140
Joined: Jan 2011

I was not referring to any specific procedure or method. I was talking about all the latest development, some of which originated from treatment of other types of cancers that are percolating to the gyn cancer treatment modalities (e.g., vaccine therapy, cyberknife procedures, cancer stem cell research, etc) and some are specific to gyn cancers (e.g., parb inhibitors, etc).

the point is, we don't need to be "cured" within next 3 years. We just need to hang in there to let the medical science to keep coming up with the options and treatment modalities that will end up having an enormous impact on our well being. Case in point: the dose dense schedule - that is just starting to be deployed (me) is a significant breakthrough.

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

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

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

not sure how it happened, but it's a drag. i wonder if we can ask csn for a delete button? i'll ask.
maggie

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

thanks so much for your informative, helpful post.

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

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

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

As many others have, I experienced denial of PET scans requested by my doc. Even though it took awhile and yes, I had to endure the mandatory CAT scan, I finally got approval for the PET. My doctor's insurance person commended me - saying most people don't continue to fight once denied. I have had no problem since getting the needed PETs. So, I recommend that you appeal, appeal, appeal. I got the insurance company protocols and used this to fight my case. It does take time and moxie but I believe that if we continue to fight we may be able to make some systemic change eventually.

Kudos to Maggie and others for going ahead and paying for their own treatment. I am confident you will be reimbursed. Maybe we can put our heads together and eventually develop a seamless strategy for getting these tests and maneuvering these obstacles.

Mary Ann

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

On my oncologist's wall --

.....WE'RE A STATISTIC OF ONE.....

hopeful girl 1
Posts: 454
Joined: May 2010

Jan,

I like that!

Cindy

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