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Need Help/Sources for Advocacy Effort Need Help/Sources for Advocacy Effort

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Unread 05-14-2004, 05:38 PM
Need Help/Sources for Advocacy Effort

I am trying to get my health care provider group (huge and it goes into an NCI comprehensive cancer center) to mandate that any woman who presents with evidence (such as CA125, ultrasound, CT scan, etc.) of a gynecologic cancer be automatically referred to a gynecologic oncologist. It's an uphill battle. I didn't know of these doctors and consequently although I was "in the group" was never told of them and had my surgery by a plain ob/gyn.

If you know of sources that state that a gynecologic oncologist should be the Dr. of choice for surgery for a gynecologic cancer, please let me know that source. So far, here are ones I have printed off so I don't need these:

National Ovarian Cancer Coalition
Ovarian Cancer National Alliance
Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins
University of Texas MD Anderson Cancer Center
University of Pennsylvania,

The more sources I can get, I feel the better my chances of accomplishing what I'd like.
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Unread 05-14-2004, 07:04 PM
Need Help/Sources for Advocacy Effort

Read your interesting post, Ellen, and thought I'd share this little tidbit of personal experience: My surgery was done by both my gyn and a gyn onc surgeon. My gyn started the surgery; once they had any evidence of cancer (i.e., results of the frozen sections), the gyn onc surgeon took over. Their fees for surgery were exactly the same.

What happened in my case, before surgury, is that once my gyn got the results of the CA125 and realized the possibility of cancer involvement, she sent me and my case right over to a gyn onc surgeon.

I see this as the crux of the issue: At a time when you're faced with something as traumatic as cancer, it would be great if your gyn referred you to a specialist. If their ego's are too big to bring a gyn onc surgeon into the picture, then, some one (or entity) should be guiding their actions so that you, the patient, is given the best chance for a cure.

Have you tried Sloan Kettering, Mayo Clinic, and Dana Farber?

Good luck in your efforts.
Unread 05-14-2004, 07:38 PM
Need Help/Sources for Advocacy Effort

Hi Ellen, just wanted to add that initially I also never thought of having a gyn/onc come into the picture when tests were showing possible cancer. Similar to Maureenie's case my gyn told me a gyn/onc would be on call ready to assist and would take over part of the operation if cancer were discovered which he did.
I find it totally irresponsible for a gyn to not consult and work with gyn/oncs when cancer is suspected. I now am wondering whether the gyn national associations have any stated opinions re this issue and/or how meds schools deal with this important issue. I think your goal is highly commendable and wish you the best success. Blessings, peggiesue
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Unread 05-15-2004, 06:39 AM
Need Help/Sources for Advocacy Effort

s Ellen

The following is from the Women's Cancer Network.
Hope it helps. Sounds like you have alot of good sites already.
I thought the SGO had a statement on their web site, but I cannot find it.
Unread 05-16-2004, 08:49 AM
advocacy effort

Dear Ellen,
Thank you for working on this issue. When I was scheduled for
surgery for possible cancer(which turned out to be stage 3c ovarian cancer), I was never informed that the surgery should
be done by a gyn onc, and my surgery was done by my regular
gyn because my medical group did not allow me to see any one
outside of their group. I went to a regular onc after surgery who
did not know much about ovarian cancer and was against the
idea of additional chemo after the initial chemo(which is now
considered standard of care). When I found out that I should
have been operated on by a gyn onc and been seen by one
throughout treatment, I felt like taking legal action. I was told that I would not have a case, but I did switch to a different medical group that would allow me to see a gyn onc. I am thankful that I found a good gyn onc and a good onc who work
together, but I always wonder if my surgery was done as well as
it should have been done. I am glad to see that you are working on this.


Twisted Sister
Unread 05-17-2004, 10:01 AM
Need Help/Sources for Advocacy Effort

Hey Ellen,

I just nosed around the website of the cancer center where I work and unfortunately was not able to find anything that would be of help to you. As Karen said, I'm surprised that SGO did not have a statement about this. I will keep looking to see if I can find any journal articles or anything where a gyn onc is recommended.

Unread 05-17-2004, 10:38 AM
Need Help/Sources for Advocacy Effort

The JHU path department has a link on their website to an article that demonstrates a survuval difference.

I will try to find the actual scientific journal article for you

Unread 05-17-2004, 10:55 AM
Need Help/Sources for Advocacy Effort

A scottish study

A US govt website advising gyn oncologists deal with ovca

A US study in J clinical oncology

All of the references
Unread 05-17-2004, 05:34 PM
SGO Referral Guidelines


I just got home from vacation and am scheduled for extensive oral surgery tomorrow morrning (a dental implant and/or bone graft). I have it on my "to do" list to write to the new (woman) president of the American College of Obstetrics and Gynecology (ACOG) to ask ACOG to issue an opinion that women with known or suspected endometrial cancer should be referred by generalist ob-gyns to gyn-oncologists for treatment.

As the link Karenann posted above indicates, ACOG recently issued such an opinion for ovarian cancer after the results of a study at Johns Hopkins by the gyn-onc I went to for a second opinion.

Over the course of the past several months in anticipation of writing the ACOG letter, I have been putting together some research materials to use to support the position my letter will be taking. One reference I plan on citing to is the Society of Gynecologic Oncologists' referral guidelines, which can be found at:

I do have some other materials in my file that may or not be of use to you, but I won't be able to go through the materials before my surgery tomorrow. However, as soon as I'm feeling up to it after the surgery, I'll go through the file and post anything else I have that I think would be of help to your cause.

Good luck and thanks so much for all of your hard work on this very worthwhile project!

Unread 05-18-2004, 12:01 PM
Need Help/Sources for Advocacy Effort

Hi Ellen,

I did a quick lit search and came up with two journal articles that might help your cause. The references are below, you should be able to access the abstracts on PubMed, or I can PM them to you. I've included a brief summary of their findings as well.

Harlan LC, Clegg LX, Trimble EL
Trends in surgery and chemotherapy for women diagnosed with ovarian cancer in the United States.
Journal of Clinical Oncology. 21 (18): 3488-94, September 15 2003.

This article states in that women referred to gynecological oncologists for OVCA have a significant survival advantage, probably due to the fact that gyn/oncs do lymph node sampling more often than gynecologists. Includes some important items on racial and socioeconomic barriers to treatment as well.

Gershenson, David M.
Why American Women Are Not Receiving State-of-the-Art Gynecologic Cancer Care
Cancer Journal, Nov/Dec2001, Vol. 7 Issue 6, p450.

This might be a great article to use as ammunition, it describes several of the limitations to getting optimal care for gynecological cancers, including ovarian. Some of the factors listed include: (1) inadequate interactions between subspecialists and referring physicians, (2) disincentives for physicians to refer patients out of managed care networks or group practices, and (3) disagreements between clinicians representing competing disciplines.

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