Tuesday, July 7, 2015

Research hope and hopes dashed

I do follow the latest breast cancer, thyroid cancer, rheumatoid arthritis and fibromyalgia medical research. Some inner child is waiting for the cure to all of these ailments. I have learned a great deal about these ailments through reading the advances and get hope that some day a cure will be there. I also welcome the access to medical and other research across the board.

When I was first diagnosed with thyroid cancer in 1981, if I wanted to find information I had to go to a university's research library and read medical text books. It was confusing to say the least. In those days research was left to scientists and published in technical journals that were dense and textbooks for those learning the science or medicine that were no easy read.

Times have changed and I can find research every where. I can browse scientific journals online, set up Google alerts to send me the latest news, review the disease information on association websites, and have access to advances as soon as they are announced. However they all seem to be followed with the disclaimers 'more research is needed' and 'FDA approval is 5-7 years away'. Which can be frustrating, to say the least.

Every so often, I read some research that makes me wonder if I am over thinking, and perhaps the rest of us are too. I read this article on the impact of stress hormones on breast cancer recurrence or progression due to treatment resistance. It starts out by saying progesterone may stimulate that growth of cells that make cancer resistant to estrogen based treatments. Then it goes on to talk about the role of CK5 and goes on from there...

I admit it, I got lost. My breast cancer was ER-/PR- so do I have to worry about this at all? Well once I read it three times, I figured it out and could follow along.

But it made me wonder (which can be a bad thing), should I try to NOT follow all this research? Am I over thinking the hope that there is a cure out there? Should I leave this research to the scientists and not get myself bogged down in the details? I mean I do get the sense of hope from all the research that some day that cure will show up.

But is it worth letting myself get excited about the potential in the research and then get let down by the fact that the ending is 'more research is needed' and 'FDA approval is 5-10 years away'. Am I contributing to my own emotional medical roller coaster by trying to follow the advances and ensuing waiting?

A big part of any medical ailment is the emotional roller coaster that becomes part of your life after diagnosis. Learning how to cope with the roller coaster can be very difficult. And am I aggravating my own stress levels by accessing all this research? I will have to do some more thinking on this.

4 comments:

Teresa Saum said...

Caroline, when I was diagnosed, I tried to read everything. Then I decided it was making me crazy and I left it all in my oncologist's hands. It might not be right for everyone but it works for me. I no longer remember many of the details, I rarely read any research, and I go on my mostly merry way.

Barbara Tako said...

Thoughts about this from fellow cancer survivors? http://www.curetoday.com/community/barbara-tako/2015/06/cancer-emotional-survival-101-tips-for-newly-diagnosed-cancer-patients-and-their-loved-ones

Lisa DeFerrari said...

Caroline, I've been following the news on cancer research pretty closely for some time, and especially since I started a blog about progress in cancer research from the patient's perspective a couple of years ago. I agree that many of the studies that are reported involve very early research, with years until a possible clinical application--and yes, it's frustrating to see this time after time. I try to take a big picture view as much as I can and try to see the trends. For example, some of the recent progress on immune system therapies seems promising and is already helping some patients a lot.

Unfortunately, much of the research in cancer is done by labs working in separate silos. And it's hard not to think that this lack of common goals and coordination is slowing down progress. At the same time, funding pressures are increasing. I think that solving these kinds of problems shouldn't just be left to the experts since all of us are affected. So I do think that we as citizens need to be generally aware of what's going on in cancer research so that we can be in a position to make our voices heard about what's important to us.

S Rocks said...

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