Received message from It Happened To Me (Jeanette)

Eldri, I think we all wonder where some of the women have gone - and hoping - like Jeanette, she is off living her life.  I didn't know about HellieC, and do appreciate knowing, sad as it is.  

I don't think your post is a downer.  I have been thinking a lot about "life" myself, and this is a good place to come and talk about things - not just the cancer but everything we deal with and think about.  

The problem is that there is not enough new data showing whether treatments have worked or not, and tons of contradictory information. I sometimes wonder whether our ONCOS are learning as they go!

As a casual observer, not going by scientific data or controlled conditions ... so I am strictly a layperson in every sense of the word ... I've deifnitely been seeing longer DFRs (disease-free remissions) and OS (overall survival rates) here and with our Teal sisters just over the last ten years. I've cited that study showing that 25% of advanced-stage Ovarian cancer surviors now have survived more than ten years. I believe that many, if not all of those were Stage 4s.

Looking at the endo posts from around 2010, there were not many five-year survivors. Today, there are many more who have reached that mark. Many ladies here report their doctors have seen ten- and more-year survivors of advanced-stage Endo cancer, including many Stage 4s. Hey, five years are nice, but ten or more years are much, much better!

Also looking at survival data from advanced-stage cancer in studies back in 2009/2010... well ... unless you want to truly , truly depress yourself, don't look at those reports! Trust me on this one. Today, the oft-cited 15% survival rate (which uses data from much older cases, by the way .... dating from the early 2000s) seems to have gone up in the last ten years, according to many oncos, if you also go with what our endo cancer survivors write. Reading scattered reports and looking at posts here, I'm seeing Stage 4 survival rates ranging from 17% to 26%, depending on whom you're talking to. If it's around 25%  like the ovarian study cites, that gives us much better odds than 15!

On the surface, it makes sense. Back in 2009, some doctors used radiation as frontline treatment for Stage 4s, for example. Today, doctors know that can make a Stage 4 worse. Oncos are learning constantly. Treatments for other types of cancer can also affect endo cancer ... cyberknife, for example. As someone here wrote so long ago, you can't simply presume that researchers have put away their data and gone home over the last five years.

Yet ... death rates are still puzzling. Why isn't the survival rate considerably improving as in other cancers? Why is the death rate actually showing a slight increase? Lack of data, Baby Boomers getting into their 70s coming down with UPSC (UPSC mainly strikes women in their 70s, according to my second-opinion doctor) ... what? Why?

RECENT studies (2012 and later) are often scattered and incomplete, leaving so many quesitons. To be honest, I've given up looking at them 90% of the time now. We need more studies simply seeing if those undergoing treatment are surviving longer and posing some theories as to why or why not!


EDIT ... If we think Type II endo cancer is bad, peritoneal cancer rates were even more depressing back then. REALLY bad. Yet I met a primary periotneal cancer chemo patient who went 1 1/2 years DFR. That is QUITE a jump from eight to ten years ago! 

TO said:

Just got diagnosed with endometrial cancer

I am freaking out with my diagnosis. I am waiting on a CT scan For high grade serous endometrial cancer. Just need to talk. 

Oh, my. The waiting is so hard and I found the first few weeks the most difficult emotionally. Other ladies will be along soon to offer you encouragement. There is an excellent post on this board about the many out of date statistics that are found on the internet. Those out of date stats are so disheartening. I am almost one year out from surgery (May 1), chemo, and radiation for UPSC and as others will tell you it's not easy but it is doable. 

I kind of have dual perspectives, as a endometrial CA patient and as the spouse of an oncologist. The oncologists are very upbeat about new therapies targeted at specific mutations common in many cancers. “Game changer” Immunotherapy, which is FDA approved for cancers that have the mutations targeted (Including gyn malignancies) And has produced spectacular CURES even in late stage disease. 

Overall, 50% of cancers now are treated as “chronic disease”, which is having many implications for medicine overall. Let’s hope that figure increases exponentially in the next few years, most researchers Think that is likely.