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My final diagnosis 1 yr later is stage 1a grade 1 My final diagnosis 1 yr later is stage 1a grade 1

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Unread 01-21-2004, 07:02 PM
The letter is written

It took several hours and lots of editing...and I said I was not placing blame but rather trying to educate... Now if they listen to me... Sheila--what an inspiration to me you were--and the get-go I needed.
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Unread 01-21-2004, 08:09 PM
My final diagnosis 1 yr later is stage 1a grade 1

Hi, Sheila--

Congratulations on the great news of your CT/PET scan results!
And best of luck on the gyn cancer advocacy scene. Sounds like a very worthwhile effort you are about to undertake. Regarding the ob/gyn vs. gyn-onc issue, I have heard that the American College of Obstetrics and Gynecology (ACOG) has not been willing to issue a policy statement that ob/gyns should refer all women with gynecologic cancers to gyn-oncs. I was told that the reason they are not willing to do so is at least in part financial, because if the ACOG came out with a position that all women with gyn cancers should be referred to gyn-oncs, the regular ob/gyns would obviously lose the revenue they're currently making from doing these surgeries, and the ob/gyns would be unable or unwilling to pay the annual fellowship dues to the ACOG each year.

From what I was told, the ACOG does not want to alienate these ob/gyns and lose a substantial amount of revenue from them. I have no way of verifying the accuracy of this information, but the individual who made these statements to me is also a member of ACOG, and would in all likelihood be considered extremely credible. However, I must admit that when I heard this explanation, I was surprised and disappointed.

It's only my opinion, but I think that at least here in the States, the insurance companies are not going to be able or willing to take a position denying coverage for surgeries performed by ob/gyns on women with gyn cancers either without organizations like the ACOG first being on board with such a position, or without some type of legislation to that effect. I'd be curious to see what sort of response you get from the insurers in the U.K.

In the meantime, women with gyn cancer run the risk of having someone performing surgery who might be putting their lives or health in jeopardy because of lack of specialized gyn-oncology training or experience. Your case sounds like a good example of such a situation.

Ah, so much work, so little time . . . .

Best regards,

Unread 01-21-2004, 09:01 PM
My final diagnosis 1 yr later is stage 1a grade 1

Hi MoeKay

The following statement is on the Hopkins web page. Hope this helps.
Anyone should feel free to share it with their ob/gyn.
oxoxo karenann

ACOG Issues Opinion that Referral to a Gynecologic Oncologist Is Recommended for All Women Suspected of Having Ovarian Cancer
Posted October 27, 2003

Sean Patrick, OvCA Survivor and Advocate

The American College of Obstetricians and Gynecologists (ACOG) recently published a committee opinion recommending referral to a gynecologic oncologist for women suspected of having ovarian cancer. Recent studies have shown that when surgery is performed by a gynecologic oncologist, survival rates improve.

This opinion follows the large study completed by Dr. Bristow et al at Hopkins that demonstrates that surgery has a greater impact on length of survival than chemotherapy. So where you have your surgery and who does your surgery are the two most important things to consider when facing a possible diagnosis of ovarian cancer.

The complete opinion appears in the January 2003 issue of Gynecologic Oncology.
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Unread 01-22-2004, 12:58 AM
My final diagnosis 1 yr later is stage 1a grade 1

Just as an aside, it's not "just" cancer that should lead some of us to the oncologists.

Most GYN-Oncs can also operate on intestines and bladder, where necessary, since they have the three years of extra surgical experience above and beyond the OB-GYN rotation. My doctor and I have been going back and forth on the idea of a diagnostic laparoscopy, as there is some evidence that my intestines are now adhered to my bladder -- and she feels that for my safety, I should stick with the oncology group that did my original surgery (which, for those of you who've not "met" me, was originally for suspected ovarian CA in the setting of a giant, complex cyst and CA-125 of 200).

For those of us with endo, the surgery can also be quite complicated -- and the outcome, again, possibly improved by having the oncologist perform the original hyst...

Just my -- but they really are the specialists in complex GYN surgeries in general...

Unread 01-22-2004, 05:38 AM

all your replies. Margaret 321 i have never been an inspiration to anyone before!! Please let us know if you get a reply. I was the same as you i had never heard of gyn/onc till i first visited this site, but when i was in hospital i did say to my gyn/ob...'shouldnt i be under a cancer specialist'...?... and her reply was that it wasnt necessary.

Moekay..... one of the major problems over here as well, according to the Professor i met with, is that basically the gyn/obs dont want to lose the business! So yes a lot of it is all down to money not our lives.

Denton56 you hit the nail on the head. My gyn/ob just basically assumes she is superwoman. She delivers babies at two hospitals. Runs two clinics. Operates two days a week. Has a family. Just thought she could do it all i suppose. Yes the government has hired more oncologists, cancer nurses and radioagraphers. The PET/CAT scan arrived at Christmas time and i was the 3rd person to use it! So things are improving. People just need educating and women like us have to know to ask/insist on seeing a gyn/onc.

Thanks again for all your replies and thoughts.
Unread 01-22-2004, 06:35 AM
My final diagnosis 1 yr later is stage 1a grade 1


My information on this issue was before 2003, so I'm glad to hear some progress is being made on this front. However, it took the ACOG until 2003 to issue this opinion, and then only for ovarian cancer, not all gynecologic cancers?? It is my understanding that gynecologic oncologists have been around for at least the past 30 years!

Incidentally, I know the author of the ovarian cancer study you cited, as my second opinion consult before treatment was with him. Perhaps I should write him and find out how we can persuade the ACOG to issue a similar opinion for ALL cases of suspected or diagnosed gynecologic cancer and not just ovarian? Do we need to have studies on each of the other gyn cancers before they are willing to do so? The ACOG is certainly well aware of the extra years of training gyn-oncs receive, so wouldn't it be in the best interests of women that they issue a similar opinion across the board for all gyn cancers? I would think they should be stepping up to the plate, especially in light of the increased mortality to incidence ratio for endometrial cancer.

I'm also wondering if the recent ACOG opinion would have made a difference in cases like Margaret's or Sheila's. If I understand their situations correctly, neither of their ob/gyn's ever mentioned the possibility of ovarian cancer before surgery. In fact, didn't Sheila think, based on what her ob/gyn told her after surgery, that she had endometrial, not ovarian, cancer?


I wonder how likely it is that women would get referrals to gynecologic oncologists for non-cancerous conditions, when they often can't even get them for cancer. Many women are in HMO's, that I would suspect, would be likely to balk about paying for an oncologist for suspected non-cancerous conditions. Your comments seem to clearly illustrate the need for more extensive training to upgrade the qualifications of ob/gyns. Perhaps the ACOG should focus some energy on this issue.

Best regards,

Unread 01-22-2004, 07:19 AM
Hi Moekay

Yes my gyn/ob said i had endometrial cancer. When i went to my GP to get confirmation of this he refused to show me my gyn/ob's letter to him. :burning:

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