First Annual Report on Gyn Cancers

Hi Everyone--

The Gynecologic Cancer Foundation just released the 2003 "State of the State of Gynecologic Cancers," which is the first annual report to the women of America. The report's release date was planned to coincide with Gynecologic Cancer Awareness Month, and the report will be released annually hereafter every September.

I haven't had a chance to review the Report yet, but thought I'd pass the site along for your information and review. It includes sections on cervical, uterine, ovarian, vaginal and vulvar cancer. In taking just a quick glance, I see that it includes information on gynecologic-cancer-related legislation either about to be proposed or already in the legislative pipeline.

I'm looking forward to reading the report. Hope you find it informative. Here's the site: http://www.wcn.org/images2/GCFStateoftheState.pdf

Regards.

MoeKay

s Moe Kay

Interesting...... but I wish they had listed more of the ovarian cancer symptoms. So many studies have now proven that those symptoms are out there. Docs will not take these symptoms seriously until organizations like the GCF and SGO start to list them as well. JMHO.

karenann

Hi, Karenann--

By all means, please write to the GCF/SGO and let them know your thoughts and suggestions. I've written letters to Dr. Podratz (the current GCF Chairman) and Dr. Gostout, (the Editor of the Annual Report) both of whom are at the Mayo Clinic, on endometrial cancer issues and have received written, phone, and email responses since I began writing over two years ago. They appear to be very interested in hearing from survivors, so by all means, voice your concerns!! Since the "State of the State of Gynecologic Cancers" will be an annual publication, your writing to the SGO/GCF now will most likely ensure meaningful changes for next year's Annual Report.

In addition, each time the President of Fox Chase Cancer Center writes to me asking for a contribution, I write trying to get a commitment from him to do something constructive to drive down the number of endometrial cancer deaths, which as you've heard me say repeatedly on this site, have increased dramatically over the past 15 years. So far, no luck, but I just received another solicitation from FCCC yesterday, so another letter to Dr. Young will be forthcoming! I figure I can keep writing him letters as long as he keeps sending me letters for donations.

Thanks for taking the time to read the Annual Report and for providing me with your assessment of the document.

Take care.

MoeKay

Me again Moe Kay.
Here is what I can't quite figure out. I attended the last SGO conference in New Orleans. There in their huge display room they actually had hanging on display walls the studies that have been done on ovarian cancer and it's symptoms.
Not just one study, but numerous studies.
So why in a major publication would they list so few of them??
Fox Chase Cancer Center is where I am treated. I too get those letters of requesting contributions. I figured it was because I was a patient. Are they mailing those to all people with cancer? Now that I think about it, Memorial Sloan Kettering mails a similar letter to me.
Hopefully they are sent to the public at large and not just cancer patients?
oxoxo karenann

Hi, Karenann--

You raise an interesting question. Of course, I have no way of knowing what went into the GCF/SGO's editing decisions, but it's a good question to direct to Dr. Gostout, who was editor of the report. In reviewing the document, it does look that they tried to dedicate about the same amount of space (a page and a half) to each of cervical cancer, ovarian epithelial, ovarian stromal cell and germ cell, endometrial, uterine sarcoma, vaginal and vulvar cancers. So perhaps their thinking was to keep the document somewhat balanced in length among all of the gynecologic cancers, but again this is only my speculation on what their rationale might have been.

Also, they may have thought it desirable to set a limit on the length of the entire document to perhaps attract a larger number of women to read it. They may have felt that if the report was too voluminous, women might have neither the time nor the inclination to read it. If you do pose the question to Dr. Gostout, I'd be interested to hear her response.

To answer your question on FCCC and MSKCC solicitations, I had made contributions before I was diagnosed with cancer, so I was on their contributors' mailing list. At least in my case, I was getting regular requests for donations before cancer. I think once your name is out there as having made contributions to various charities, you name finds it's way to many other organizations' lists. I can't tell you how many worthy (and not so worthy) causes send me solicitation letters on a regular basis!

MoeKay

Moe Kay
Thanks for the link. The report was brief but interesting. I also noted that my gyne/onc is listed as a contribitor. I'll have to ask him about it next appointment.

Thanks

Ruth S

Thanks for the report. I personally think it is wonderfl that we have a serious documentation on the national level to make othe women aware of gynocolcal cancers. As any cancer is serious, our kinds of cancer take away our very womanhood.

I think the report shuld be more informative, but I agree, maybe they shortined it to gather more interest to women.

I think if they put more into next year I would like to know if there is a way to prevent cancer return. I do think it is also on everyone eles' mind at one point or another. they shuld include sites for support uch as hystersisers.

Hi, Karenann--

In response to your posts, I took a look at the GCF/SGO's New York Times Gynecologic Cancer Supplement that ran on June 22, 2003. One article on ovarian cancer listed the following possible symptoms:

Abdominal bloating, difficulty eating, unexplained weight gain, constipation, heartburn, severe back pain, urinary frequency, and severe fatigue.

While I'm not sure if this list is complete enough for you, it does appear a lot more detailed than what appeared in the Annual Report. It also would not take that much more space to have published a more in-depth list of symptoms such as the one contained in the NY Times Supplement. In reading your second post, I had originally thought you were asking why they did not discuss the studies you had seen posted at the SGO conference. Thus my response on possible space or length of document issues.

I really hope you do contact the GCF/SGO with your concerns so that next year's Annual Report provides a full range of symptoms for women with known or suspected ovarian cancer. If you haven't read the NY Times Supplement and want to, it is posted on the Women's Cancer Network website: www.wcn.org.

Please let me know what you learn.

Take care.

MoeKay

Just to let you know why I think your contacting the GCF/SGO about your concerns about the listing of ovarian cancer symptoms in the Annual Report. After the NY Times Supplement ran this June, I wrote to express my dismay over the fact that while the supplement advised women what screening tests were needed to diagnose or rule out ovarian and cervical cancer, it failed to state the necessary test for endometrial cancer. I found this very disturbing because they had reported the fact that the number of deaths from endometrial cancer had dramatically increased, yet the supplement failed to state that the only way to confirm a diagnosis of endometrial cancer is through tissue sampling of the endometrium--either an endobiopsy or D&C.

I was very happy to see that the Annual Report contains a statement instructing women with unexplained bleeding to have an endobiopsy to check for endometrial cancer.

MoeKay

I have been reading your posts and the replies by everyone. I have a question that has been on my mind. I have never been in an gyn office where they have pamplets or handouts on the symptoms of gyn. cancers. Something that women could pick up and review and be made aware of. Have any of you? And if not, how would we (or me) go about trying to get this to happen? So many of us say that we had an instinct that something was wrong, but our dr's assured us we were ok. In my case, had I known how much I was at risk for endo. cancer, and put that together with the symptoms I had - I would have insisted on a biopsy and not accepted the "spastic bowel" diagnosis. What is your opinion on this?