|Get Thee To a Gyn-Onc!|
by Laura Dolson
Susan Kling says it best. She travels 300 miles round trip to see her gynecologic oncologist. Why? "It's a small price to pay for potentially saving a life". She's not exaggerating
Three years ago, Susan was treated for endometrial cancer by her ob/gyn, who performed a total hysterectomy. At the time of the surgery, malignancy was also found in her ovary, and her doctor advised radiation therapy for the "metastasis" from her endometrial cancer. After getting over the shock from her diagnosis, Susan began to investigate her cancer in the library where she worked. She quickly realized that some potentially important elements had been missing from her treatment, and further, that she had not been told of the specialty of gynecologic oncology. She referred herself to a gynecologic oncologist, driving 3 hours to get there. The specialist reviewed her pathology reports and found that she had two independent primary cancers - in other words, Susan had endometrial AND ovarian cancers. It was then that Susan began to get the treatment that she needed.
What is a Gynecologic Oncologist?
Gynecologic oncologists are specialists in the area of female reproductive cancers. By training, they are ob-gyns with an extra specialty added on. This means they complete 4 years of ob/gyn training after medical school, and then 2-4 years of more specialty training beyond that. They are trained in all the treatments used for gyn cancers - surgery, radiation, chemotherapy, and experimental treatments.
What can a gyn-onc do that other doctors can't?
Not only do gyn-oncs learn to do surgery on the female reproductive system, but on all the organs of the pelvic and abdominal tissues and organs which may be involved if cancer has spread. Perhaps most importantly, they are extensively trained in the vital techniques of surgical staging and cytoreductive surgery (also called "debulking"). These procedures can ultimately be a matter of life and death. In Susan's case, for example, accurate surgical staging did not take place. Even when other specialists perform surgical staging procedures, they are less likely to do it accurately than gyn-oncs. Finding the exact stage of the cancer is vital to planning the best treatment. In the case of cytoreductive surgery, gyn-oncs simply do a better job of finding and removing tumors that have spread in the pelvic and abdominal areas.
Another advantage to seeing a gyn-onc is that one doctor can manage all the treatment for a patient, since they are trained both as a surgeon and a specialty oncologist. They can prescribe and oversee all aspects of a woman's treatment, and are the most likely professional to be well-versed in the latest treatments in the area, including experimental ones.
Who should see a gyn-onc? One gyn-onc I asked gave this capsule summary: "Anyone who has been advised to have surgery for what could possibly be a gyn cancer". This would include exploratory surgery for any "suspicious pelvic mass". More specifically:
Ovarian Cancer - EVERY WOMAN WITH OVARIAN CANCER SHOULD BE TREATED BY A GYNECOLOGIC ONCOLOGIST IF AT ALL POSSIBLE. Several studies have shown that women with ovarian cancer (the most studied cancer in this respect) live longer if they are treated by gyn-oncs than one of the other specialties (gynecologists, oncologists, surgeons). Accurate surgical staging and, if appropriate, cytoreductive surgery are crucial to the optimal treatment of ovarian cancer. And yet, one recent survey showed that fewer than one half of ovarian cancer patients are being seen by the appropriate specialist, even though the vast majority lived in a metropolitan area where there are gyn-oncs available.
Patients with primary peritoneal carcinoma should be treated similarly to ovarian cancer.
Cervical Cancer/Dysplasia - Cervical cancer should always be seen by a gyn-onc, if possible. Also, if a woman has recurrent severe dysplasia and a hysterectomy is being considered, she might think about getting the opinion of a gyn-onc.
Endometrial/Uterine Cancer - Often, women with these cancers are not referred to gyn-oncs because many are at low risk for spreading beyond the uterus. However and unfortunately, there are "operating room surprises" where it is found during the course of the surgery that the cancer is more invasive and the woman is at higher risk. These women should then have a surgical staging procedure, best performed by a gyn-onc. Although it is not uncommon for a gyn-onc to be available for consultation during surgery, if this is planned in advance, the best case would be for a gyn-onc to be handling the surgery from the beginning.
In the case of complex atypical hyperplasia, a referral might be considered, especially if the diagnosis was made by office biopsy, as a fair percentage of these women actually do have cancer that was not picked up on the biopsy. If the hyperplasia was diagnosed via a D&C, however, any cancer would have been found during this procedure and no referral is needed. (For more explanation about which types of endometrial hyperplasia may be pre-cancerous see the article "Making Sense of Hyperplasia".).
Vaginal and Vulvar Dysplasia (VIN and VAIN) and Cancer - All of these women should be referred to gynecologic oncologists, who have training in the delicate surgery that is often required, as well as the latest treatment techniques.
Fallopian Tube Cancer - In the case of such a rare cancer, it is arguably even more important to see the appropriate specialist.
Gestational Trophoblastic Neoplasia - Gynecologic oncologists are specifically trained to accurately diagnose and treat this group of cancers, as all the other gynecologic cancers.
How can I get a referral?
How to Get a Referral - Sometimes insurance companies require referrals to sub-specialists. Many, if not most, MD's will give you a referral if you ask for it. Second opinions are standard in medicine. If this doesn't get results, or if you aren't up to simply asking (and, if necessary, insisting) on a referral to a gyn-onc, try these time-honored tips:
- Print out a printer-friendly version of this article or this great article with many references from Canada's National Ovarian Cancer Association. This sends the message that you are no pushover - you have done your research and are well-informed. It also shows that you are on the Internet, and have access to information about the current standards of optimal care.
- Go the the Web site of the Society of Gynecologic Oncologists and obtain and print out their Referral Guide. (This is a PDF file and Acrobat Reader will be needed.) This theoretically should always get a referral for you, since it is a professional document, and is extensively referenced with medical studies showing the importance of the specialty.
- If all else fails, hint at a lawsuit. I know this probably sounds harsh, but this is your life.
How do I find a gynecologic oncologist?
Admittedly, this is not always easy, especially in more rural areas. However, most women live within a reasonable distance of a city with these specialists. The Woman's Cancer Network has a search page to help locate gyn-oncs in the US, or they can be contacted at 1-800-444-4441. If you live in New York City, this search page includes gyn-oncs who have been through a screening process. In Canada, Ovarian Cancer Alliance Canada has a list of gyn-oncs.
You owe it to yourself to get the best care you can. Ask Susan. She says she'd travel across the country if she needed to.
Copyright © 2001 by Laura Dolson. All rights reserved. Please submit reprint requests to firstname.lastname@example.org
The material on this page and Web site is for informational and educational purposes only, and should not substitute for medical advice. Anyone having questions about the application of information appearing here to a specific person or situation should obtain advice from a qualified physician.