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Research for USPC

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

I keep turning over in my mind how we could support research for our rare cancer. My Gyn Onc is married to another Gyn Onc and committed to dedicating their lives to Gyn Cancers. In my imagination I see the two of them on Television promoting awareness; they are both out of residency 11/2 years and eyecatching. But then how would we raise funds? With this neuropathy I can't race for the cure (although I have had breast too). And we need something different. If we put our heads together can we think of something catchy? Could we do it? I don't even know where the major research is occuring for our cancer; I know Yale does some research but there must be other institutions and leaders. How do we start? I've never done anything like this before, but as I read your blogs I just feel like we need to try and do something. Any one with ideas and spare energy (I know with treatment where energy is)? Toss it around in your mind. Let's see if we can come up with something together.

Diane

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

I know that my doc has done some research. at my next visit in 2 months I will ask him about UPSC research. I think - not sure about this, though - that cancer centers/resarchers apply for grants but I don't know how these grants get started. That's what we need to find out. Are there any famous people with our type of cancer?? If there is maybe they will donate money for research. I wonder if the American Cancer Soceity can answer these questions.

Readers, do you have any info?

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

This is a response from Chrysoula -a physician - whose mother is a UPSC patient. what do you think our question should be?? Maybe we need to brainstorm some possible research questions.

September 9, 2009 - 1:58pm
To Mary Ann
new

There are 2 different types of research.
- the investigator initiating research: a physician is starting a research
- drug company research: to evaluate a new drug.

To start a research you need to have a specific question: What are you researching about? For example: Should we do a vaginal US every year (same as we do PAP test) to diagnose gynecologic cancers early? OR: Patients with uterine cancer stagge II: how many chemo and how many radiation is needed? OR: early signs of uterine cancer that a gynecologist should ask to diagnose in early stages. Those are just examples

Then, the physician who has this question, needs to review the literature (since this question might have been answered in the past). He submits his request to a local IRB (Investigation research board), those are the people who make sure that the patients rights will be respected (for example, consents, privacy regulations etc).

This is what happens in my field (rheumatology). I haven't heard of any research that was initiated by patients - but there is always somebody to start first!

I think the best is to find a physician who is interested in research in uterine cancer. And who is experienced. It's more than I wrote above. You have to find inclusion- exclusion criteria, and to find many patients to have results that worth to publish. So, if any of you is followed by an oncologist in a cancer center can ask if there are any trials or research projects that you want to participate. Or if you have an idea of what you want to search about, you can ask your oncologist if this can become a research subject. Keep in mind: something that we - as patients - think it is interesting, but not be interesting at all to the doctors and researchers.
I don't know if I answered your questions - I am mostly a clinical rheumatologist, a researcher would give you a better answer.

Take care

livenow09's picture
livenow09
Posts: 63
Joined: Apr 2009

interesting idea; I personally tell as many middle age/postmenopausal woman I meet to be wary of vaginal moisture; this was my ONLY symptom, intercourse became easier, drainage was clear, odorless and slightly sticky; lucky for me I found the UPSC cancer at Stage 1A grade 3

two places to start would be National Institute of Health; oversees everything and American Cancer Society;

I've been reading the Journal of Clinic Oncology on line; just the abstracts; lots of interesting stuff there; names, places etc

too busy making time to enjoy myself to do that much work (I work 30 hrs a week also)

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