Excerpted from the book, Ovarian Cancer: Your Guide to Taking Control by Kristine Conner and Lauren Langford, O’Reilly & Associates, Sebastopol CA, May 2003.
This article may be reproduced as is by individuals or nonprofit groups for patient education or support groups, so long as the source of the material is cited. This article may not be reproduced or adapted for commercial use, including hospital-wide patient education, without prior written permission from the publisher.
# 1: Find a gynecologic oncologist.
Gynecologic oncologists are physicians who specialize in diagnosing and treating cancers that affect the female reproductive organs, such as the ovaries, cervix, and uterus. After completing four years of medical school and a residency in obstetrics and gynecology, they receive additional training that focuses specifically on the treatment of gynecologic cancers.
If you are now facing surgery for a suspicious ovarian mass that could be cancerous, you must find a gynecologic oncologist to perform the procedure. Only a gynecologic oncologist is specially trained to do the surgery that will be needed if ovarian cancer is found. Research has shown that women with ovarian cancer who are treated by gynecologic oncologists tend to fare much better than those who are not.
If you’ve already been operated on by a gynecologist or general surgeon, it is not too late to consult with a gynecologic oncologist. Gather all of your records together and make an appointment as soon as you can. The gynecologic oncologist can assess the quality of your treatment to date and help you plan out next steps.
To find such a specialist, ask your gynecologist or primary care physician for recommendations. Alternatively, you can contact the Gynecologic Cancer Foundation at 1-800-444-4441 to request a copy of their national directory of gynecologic oncologists. If you have Internet access, you can search for a gynecologic oncologist online at Foundation’s Women’s Cancer Network Web site, at http://www.wcn.org.
Your best bet is to find a specialist located at a major hospital or cancer center that treats large numbers of women with ovarian cancer. This should be relatively easy if you live within driving distance of a large metropolitan area. However, even if you live in a remote area without easy access to a gynecologic oncologist, you need to find a way to get yourself to one. It’s that important.
# 2: Understand that the quality of your surgery can make a major difference.
It is critical that you work with a gynecologic oncologist because the quality and thoroughness of your initial surgery can make a major difference in how you do over the long-term. Surgery for ovarian cancer is tricky and requires special skill.
Once the gynecologic oncologist confirms that there is a cancerous tumor on the ovary, she knows that there is a good chance that some of the cancer cells have spread to other organs within the abdomen and pelvis (the area from just under your lungs down to your pubic bone). Her job is to determine where the cancer has spread and to remove as much of it as is possible-without making the surgery too risky for you. This requires skill and a sense of judgment that can only be developed by operating on many women with ovarian cancer. Study after study has shown that, the more cancer that is removed, the better the likelihood of long-term survival.
While it is important to find a specialist you like and trust, right now your first priority should be to find one who is an excellent and experienced surgeon. Remember that your decision isn’t permanent. You can always make a switch later if the relationship does not work out, for whatever reason.
# 3: Read your pathology report.
In most cases, your doctor will be able to inform you right after surgery whether or not you have ovarian cancer. However, it will be several days before the pathology report, which is a detailed report on the findings, becomes available. Another specialist known as a pathologist will need to spend time examining samples of the cancer and other tissues removed during the surgery.
Ask for a copy of your pathology report and read it. With a good medical dictionary and/or Internet access at hand, you should be able to figure out the meanings of unfamiliar medical terms. If there is anything you can’t figure out, you can discuss it with your doctor. (Chapter 2 of Ovarian Cancer: Your Guide to Taking Control should help you as well.)
Although this may seem like an intimidating exercise, there are many benefits to reading your pathology report. It gives you time to digest the information firsthand, rather than getting everything secondhand from your doctor. Among other things, the report will tell you whether the tumor is benign (not cancerous), malignant (clearly cancerous), or somewhere in between (a condition often referred to as Low Malignant Potential or atypical proliferative tumor); in what part of the ovary it originated; what the cell type is; and where any evidence of cancer spread was found. Reading the report also serves as a crash course in the terminology of ovarian cancer, which will prove helpful to you over time. Finally, reading this report can be a powerful way of taking charge of your situation. After all, the report has to do with your body, and you should have a full understanding of the situation. Simply requesting a copy lets your health care team know that you see yourself as a partner in your care.
# 4: Speak up and ask questions.
If this is your first experience with a serious illness, you’re about to get a crash course in the realities of the American medical system. The most important lesson to learn right away is that time and resources are limited, and, in most cases, patients only get as much time, attention, and information as they ask for. So you want to be one of those patients who knows something about her diagnosis and asks questions.
You don’t have to get a medical degree or spend hours and hours in the library to educate yourself enough to ask intelligent questions. This book, Ovarian Cancer: Your Guide to Taking Control, combined with other information you find on your own, should be enough to get you started. As you skim through this book, check out the boxed “Questions to Ask Your Health Care Team” for ideas about what to ask when discussing various topics.
In addition to asking questions about your disease and its treatment, ask about what services are available for people in your situation. Most hospitals have a range of programs in place for people with cancer, or at the very least have close connections with community-based programs. Whether you’re seeking educational seminars or support groups, financial or transportation assistance, information about nutrition and exercise, or something else, ask your health care team what’s available. Again, this information might not be offered to you unless you ask for it.
# 5: Connect with another ovarian cancer survivor.
If you have done any reading about ovarian cancer, you probably have encountered a number of pamphlets that begin something like this: “Ovarian cancer is the most lethal of gynecologic cancers and the fourth leading cause of cancer death in American women.”
Yes, it is true that ovarian cancer is serious, and it does take many women’s lives. But don’t lose sight of the fact that there are many survivors out there, too. As a newly diagnosed woman, you may find it helpful to speak and/or meet with a woman who is now a few years out from the same diagnosis you’ve just received. In addition to giving advice, she can give you hope that you will be in her position a few years from now.
There are different strategies you can use for finding such a person. Your hospital, cancer center, or local cancer organizations may have organized a “buddy system” that matches survivors with new patients who have received similar diagnoses. You might try a support group for women with ovarian and other gynecologic cancers, which is likely to have some “veterans” in attendance. You also can try organizations such as the Ovarian Cancer National Alliance or the National Ovarian Cancer Coalition, which are headquartered in Washington, DC, and Florida, respectively, but have contacts in communities throughout the U.S. If you have Internet access and an e-mail account, you can join an online support group for women facing ovarian cancer and post your request there.
#6: Consider clinical trials.
After surgery, most women with ovarian cancer need to undergo chemotherapy. Chemotherapy is intended to destroy any small deposits of cancer or microscopic cancer cells that may have been left behind after surgery. The standard treatment involves getting two drugs, carboplatin and Taxol, which have proven highly effective in the treatment of ovarian cancer. Most women do respond to them and go into remission, a period during which there is no evidence of any cancer.
At the same time, however, these drugs usually do not offer a permanent solution: most women can expect their cancer to recur, or come back, at some point in the future. For this reason, some women decide that they want to enroll in a clinical trial, or a research study that involves patients. Some of these trials are comparing the current standard of care with newer treatments, such as different combinations of chemotherapy drugs and other anti-cancer treatments. Many women choose to take part because (1) they want to help the medical community in its quest to find a better treatment, and (2) they know that they may receive the newer treatment, which could end up being more effective than standard treatment. In fact, the first ovarian cancer patients who were treated with Taxol received the drug on a clinical trial.
Many people mistakenly believe that clinical trials are for patients who have exhausted all other treatment options, but that is not true. You can choose to take part in a clinical trial at any point in your treatment. In fact, many of the women interviewed for this book said they would have considered a clinical trial for their first treatment if they had known that they were even an option!
If you think you might be interested in a clinical trial, either now or at some point in the future, start educating yourself about them. Most trials place limits on the types and amounts of previous treatments that participants can have had.
One of the best resources for getting started is the clinical trials section of the National Cancer Institute’s (NCI) Web site, at http://www.cancer.gov/clinical_trials. There you can find more information about clinical trials and search for NCI-approved trials specific to ovarian cancer. If you don’t have internet access, you can call the NCI at 1-800-4-CANCER and request information by mail.
# 7: Get access to a computer with Internet access and an e-mail account.
If you don’t have a computer and it’s financially possible for you to get one, now would be a good time to do so. If you have a computer in your home but you don’t use it very much, now is the time to start. Depending on your level of computer literacy, you may need to enlist the help of a family member or friend in this effort.
There is an incredible wealth of information and support for people with cancer available on the Internet-and it’s all free. While some of the information is of poor quality and downright misleading, the good far outweighs the bad. All of the major cancer-related organizations, including those that deal specifically with ovarian and other gynecologic cancers, have Web sites that feature quality information and practical advice, the latest cancer news, and in some cases, online message boards. You also can use the Web to learn more about doctors and cancer centers that have expertise in ovarian cancer, access current thinking about its treatment, and even read about the latest medical meetings on this disease. You also can connect with other patients who are online and going through the same experiences at the same time you are. (See the Appendix for recommended resources that are available on the Web.)
If you’re not able to get computer access on your own, enlist the help of family members or friends who are comfortable using the Internet to do the work for you. This is a good specific assignment to give someone who asks if there is anything they can do to help. They can always print out whatever information they find and pass it along to you.
# 8: Tap into ovarian cancer organizations.
There are a number of organizations that are dedicated specifically to meeting the needs of women with ovarian and other gynecologic cancers. By tapping into their resources, you’ll not only be able to start educating yourself, but you’ll also discover that you are not alone in this experience.
- Ovarian Cancer National Alliance (www.ovariancancer.org; 202-331-1332)
- National Ovarian Cancer Coalition (www.ovarian.org; 1-888-OVARIAN)
- SHARE: Self Help for Women with Ovarian Cancer (www.sharecancersupport.org; 212-719-1204)
- Gynecologic Cancer Foundation’s Women’s Cancer Network ( www.wcn.org; 1-800-444-4441)
# 9: Inform your family, friends, and coworkers.
Just a generation ago, people often felt compelled to hide the news that they had cancer–or at least to hide the real diagnosis if it involved sexual or reproductive organs such as the ovaries, cervix, uterus, or breast in women, or the testicles or prostate in men. There is good reason to suspect that many women who were said to have “stomach cancer” in the early- to mid-twentieth century actually had ovarian cancer. People are much more open about cancer today, but some are still reluctant to share the news because they have a fear of being stigmatized or pitied or even isolated by others.
While it will be difficult for you to share the news of your diagnosis with relatives, friends, and colleagues, it is best to be open and honest right away, for a number of reasons. First, you’ll become part of the solution in moving cancer out of the closet and promoting awareness. There is no reason for you to feel ashamed or embarrassed. Second, there is often a family connection with ovarian cancer, and your diagnosis may indicate that other family members are at increased risk-especially if there are other cases of ovarian and/or breast cancer in the family.
Finally, and perhaps most importantly, you may open yourself up to sources of support that you never could have imagined. Maybe your coworker’s aunt is a gynecologic oncologist or a nurse on a gynecologic oncology unit. Maybe your boss’s sister-in-law or your son’s friend’s mother is an ovarian cancer survivor. You never know who might be a source of good information and support during this time. Also, if people know what you are going through, they often will take the initiative to help-by taking on some of your workload, stocking your freezer with prepared meals, running errands, and so forth.
# 10: If you need professional help in order to cope, get it.
Anyone who faces a cancer diagnosis experiences a certain amount of depression and anxiety. But for some people, these feelings become absolutely overwhelming: they can’t eat, sleep, or function at a level that is anywhere close to normal. They feel completely helpless and simply can’t find a way to turn things around. They become so depressed, so anxious, that they can’t take action in any kind of a productive way.
If you find yourself in this situation, don’t be afraid to seek professional help. Your health care team may be able to refer you to a mental health professional who specializes in working with people who have cancer. Many women find it helpful to meet with such a professional and, if necessary, take anti-depressant or anti-anxiety medication to help them get through the most difficult early period. If therapy and/or medications are what you need to function at a level that is close to normal, you should not hesitate to seek them out. Your health care team should not be surprised to hear this request.