Taking Charge of Your Treatment: A Breast Cancer Two-Timer Shares Her Experience

The diagnosis of cancer is a highly charged emotional event. It can throw us off for days before we can begin to think clearly. The inclination may be to follow whatever the person delivering the news tells you. Not always the best idea. As a nurse/medical writer who has breast cancer twice, here is what I recommend and live by:

1. Don’t accept the first treatment recommendation you receive. Get a second and a third opinion, and listen to the reasons for each one’s recommendations. One doctor may recommend less treatment than you think you need. Get as many opinions as you need to feel comfortable about your decision. You don’t have to decide today.

2. Ask other cancer patients, friends, and people in the medical profession for names of doctors for second and third opinions. Don’t use two doctors in the same practice, and make sure they are not affiliated.

3. Set up your appointments as soon as possible, and get copies of all your medical records to them in advance. Create a paper trail. You should have a complete file of any surgical or biopsy reports. They may be needed years later and be difficult to track down.

4. Do your own research-but wait until you have all the facts. It will help you ask the right questions. If you don’t have a feel for the reputable medical websites, make friends with a health professional. One of mine was upset by my diagnosis and said she needed an assignment. I asked her to research the relative risk of recurrence with and without chemotherapy for my type of cancer. When she had the information together, we sat down and made a list of questions for me to take to my appointments. I felt more in control, and she knew she had really helped me.

5. Take someone with you to the appointment or tape record it. When dealing with a highly emotional issue like cancer treatment, even nurses don’t always hear everything. A second set of ears or a tape will allow you to re-hear it in a more neutral environment. None of the doctors I saw: my surgeon, radiation oncologist, or the medical oncologists had any problem with taping our session.

6. Ask them to put chances of recurrence with various treatment options in a way that makes sense to you. For me, percentages worked. If surgery plus radiation and tamoxifen has an 85% cure rate, and chemotherapy would only add an additional 2-3%, is it worth the trauma and side effects of chemotherapy? That was my situation and I could live with a 2-3% risk. Another woman I met in radiation, a stockbroker accustomed to taking risk on a daily basis, was in the same boat. She opted for chemotherapy because she needed to feel she was doing everything possible. That’s the point. What is right for you may not be right for someone else.

7. Don’t give away the treatment decision to your doctor. It is your body. For any treatment to be effective, it must have your full mental and emotional support. Your immune system will not be fooled. Only you can decide your risk comfort level. My first oncologist had declared that I needed six months of chemotherapy in addition to the radiation and tamoxifen. I thought I would die either way. Both the second and third opinion physicians felt that chemotherapy was not even clearly indicated in my case. And because they both agreed, but for slightly different reasons, I felt comfortable going with my gut feeling that chemotherapy was not really right for me. It has been 13 years since that second diagnosis.