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Cancer Survivorship Cancer Survivorship

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  #1  
Unread 03-24-2003, 02:25 PM
Cancer Survivorship

Hello Ladies,

I just wanted to share some great information that I got when I went to a talk by a researcher from the National Cancer Institute last Wednesday. She emphasized the increasing numbers of cancer survivors in the United States due to better screening and treatment, and the changing school of thought which treats cancer as a chronic disease rather than a terminal disease.

Because of that, the NCI is releasing funds specifically for studying issues of cancer survivorship. They want researchers to look at physical, mental, and economic impacts of cancer survival, as well as how a diagnosis affects the patient's family.

One of the most understudied cancer survivorship areas is gynecological cancers, which did surprise me given the many issues that surround these types of cancers. Hopefully these new funds will lead to studies to help women deal with survivorship issues.

I was so happy to hear that the NCI is understanding the need for this type of research, and is pursuing it vigorously. Good news for us!! I am in awe each day of the women on this board who have gone through so much and take the time to support others. I thought you all might be glad to know that formal recognition of these issues is occurring!

Beth
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  #2  
Unread 03-24-2003, 03:06 PM
Good--Need that kind of study too

Survivorship issues I think with gynecological are very understudied. It's as if we have to find resources on our own and we are treated and once treatment is over, we're left to fend for ourselves. Especially when you get a negative-overall diagnosis like advanced ovarian cancer this is important. Thanks for this information.
  #3  
Unread 03-24-2003, 03:48 PM
Cancer Survivorship

Beth,
Your post is very interesting. I've often believed cancer was not a terminal disease but a chronic medical condition which needs lifetime care - not just medical, but emotional, fitness, healthy eating. Like many other chronic conditions (diabetes, Crohn's) good health care and healthy lifestyles make all the difference.

But living after cancer changes a person's perspective. Could be we can show everyone else how to "live" fully!!!
Thanks for the post.
Laura
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  #4  
Unread 03-24-2003, 06:15 PM
Cancer Survivorship

I would be interested to know whether the seminar you attended pointed out that although the overall cancer survival statistics may be increasing, the death rate for endometrial cancer has actually dramatically increased since the late 1980's, according to a 2001 Gynecologic Cancer Foundation press release. So it does not appear that the "better screening and treatment" your message discussed are having the effect on the endometrial cancer survival rate that they are having on cervical and ovarian cancers, the two other major gynecologic cancers, where survival rates have in fact improved in recent years. Since learning about the dramatic increase in the endometrial cancer death rate, I have been working to reverse this troubling trend. I have yet to receive a responsive answer from the American Cancer Society on this issue and just recently sent a second letter seeking an answer as to what they are doing about the increased endometrial death rate.

MoeKay
  #5  
Unread 03-24-2003, 09:21 PM
Cancer Survivorship

MoeKay,

This was a talk about survivorship funding in general. No specific cancer rates were discussed because that was out of the scope of the seminar. I posted because survivorship is a relatively new area of attention for the NCI, which I think is very positive.

I agree that the stats on endometrial cancer are very disturbing, and I wasn't trying to indicate that treatment funding was any less important. I'm sorry the ACS hasn't been of more help to you; maybe you could try to contact the NCI? I don't know whether that would get you better results or not, but contact information can be found at: http://www.cancer.gov/contact/

Anyway, I've posted a link that lists all of the studies that are currently being funded by the NCI for endometrial cancer, there are 123 listed. I hope it's encouraging to you that there is a great deal of research underway!

http://researchportfolio.cancer.gov/...erm.pl?Term=11

Beth
  #6  
Unread 03-25-2003, 04:03 AM
Cancer Survivorship

Dear Beth,

Thanks for your helpful response. I do understand that survivorship is an important and, until recently, a relatively ignored issue. Your original message had mentioned that gyn cancer was one of the most understudied areas of survivorship, so I thought perhaps the survivorship of specific gyn cancers might have been touched upon. It is very frustruating in a broad spectrum of improving cancer survival statistics when what was traditionally a highly curable cancer loses significant ground as has endometrial cancer in the past 15 years. I think Fran Drescher's situation described in her book, "Cancer Schmancer" where it took over two years and eight doctors to get the necessary and obvious testing despite clear symptoms of possible endometrial cancer highlights one important aspect of the problem. While I am always in favor of research, the stats you quote do not reassure me that the real problem with the decreased endometrial cancer survival rate will be addressed by more studies, when the Gynecologic Cancer Foundation (GCF) reports that delayed diagnosis and inadequate treatment are likely reasons for the dramatic increase in the death rate. I suspect that all the research in the world will not address these sorts of issues when we already have effective diagnostic tools and treatment if used in a timely fashion. I do have an agenda that I'm continuing working on specifically targeted to address the endometrial cancer death rate issue, which includes the GCF and NCI.

Thanks again for your response and best of health to you!

MoeKay
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