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.