Cathy B., Ontario, Canada: I found the more confident I was in my treatment and care, the easier it was to experience. It's important to have all your questions answered thoroughly, so take a list of them with you on each doctor's visit. Never be afraid to ask questions. If you feel 'rushed' in any way, tell them. Bring along a friend or supporter; often they 'hear' things you missed. Ask if you can tape record your consultations, at least in the beginning.
Ask yourself if there is a 'fit' between you and your care team. If there isn't, or you are uncomfortable in ANY way, then ask for a new doctor. I did. I wish I had done it sooner. I felt intimidated and overwhelmed in the beginning and I didn't want to offend anyone, so I stayed with a team that made me feel uncomfortable. Once I switched and developed a rapport with my new doctor and nurse, I felt empowered and back in control...it felt great! Remember, too, your file is YOUR file, so you are within your right to ask for copies of reports if you want (although perhaps you may have to pay an administrative fee). Seeing information in black and white may help you to determine WHAT questions to ask the next time.
The doctor who diagnosed my cancer is a gynecologist. Should I see a gynecologic oncologist (specialist in cancers of the female reproductive tract)?
Sue D., Pennsylvania, USA: My surgery was done by my obstetrician/gynecologist, not a gyn/oncologist. If I had to do it again, I would have insisted on a gyn/oncologist, but I didn't know enough at the time to insist on it. I follow-up now with a gyn/oncologist my family physician referred me to.
Judy K., Oncology Social Worker, Pennsylvania, USA: Trust your own judgement when it comes to educating yourself about your diagnosis and treatment options. Your capacity to integrate and tolerate information may be different from other folks; it may even differ for you from time to time. Sometimes you may need to take a break!
Georgia P., Massachusetts, USA: Faced with what could be one of the most difficult decisions you will ever have to make, I feel being informed and educated is important. Taking time to get a second opinion, or research your disease, could make a huge difference in how you will approach your treatment options. Very often you will find that your doctor may not discuss issues with you as thoroughly as you would like; however, it is "your" body and you should be very involved in making choices of what will be done to you.
There are also emotional issues which you will face, and these are very much a part of the "informed decision" process. Take a deep breath, decide what you want to know, and then ask questions until you have the answers you need. Perhaps you don't want to know everything there is to know, but even a little knowledge could go a long way in helping you understand what lies ahead.
I find I have to ask my doctor questions to gain information about my illness. Why doesn't he just tell me everything?
Cyndee D., Pennsylvania, USA: From my very limited experience, I believe that the doctors do not PUSH to tell you everything for several reasons:
They kind of "feel you out" to see the type of person that you are. Some people (like me) push their oncologists or medical professionals to the limit. I want to know every single detail and all the possibilities that surround this disease. Some women want to know it bit by bit, as they get too overwhelmed, while others want to know nothing.
In the beginning, and well into treatment, there is a tremendous amount of information to absorb. We need time to take it all in and digest what is happening to us. As we do this, we come up with thoughts and questions we want answered (usually after the doctor leaves the room!). It doesn't surprise me that it sounds like your doctor is letting you take the lead. Good for you for asking questions! I did, and I felt it gave me some control over what was happening.
Susan L., Michigan, USA: My advice to anyone with a rare cancer is to go to the best major cancer center you can find. At large cancer centers, more research is done and if the center is also a medical school, the students and doctors have to keep current on what is new in their field. Even though we're in a minority, there is no lack of care for those of us with rare cancers at a major cancer center - in fact, it is the opposite: the students and doctors do all the research they can to help you, and you're not lost in the crowd among the patients who have the more common cancers. Rather than carry the burden alone, the gynecologic oncologist has the residents help with research. In such a competitive environment, when research is part of a residency, it is done well.