Follow-up Care: Balancing Vigilance and Faith
January 15, 1999 I finished eight and a half months of cancer treatments: chemo, surgery, more chemo, and radiation. Finally, I was done, ready to get back to my normal life. From early March 1998 when I first saw a doctor for my breast symptoms, I had not gone longer than two weeks without a medical appointment.
However, like many breast cancer patients, I didn't feel relieved; I felt adrift; I felt afraid. As an inflammatory breast cancer survivor, I was statistically likely to have a recurrence within two years, so how would I know I was OK without all those doctor's appointments? When patients finish their cancer treatment, they have almost as many fears and questions about appropriate follow-up care as they did about their original diagnosis.
The American Society of Clinical Oncology's guidelines say, "The evidence supports regular history, physical examination, and mammography as the cornerstone of appropriate breast cancer follow-up. All patients should have a careful history and physical examination performed by a physician experienced in the surveillance of cancer patients and in breast examination. Examinations should be performed every 3 to 6 months for the first 3 years, every 6 to 12 months for years 4 and 5, and annually thereafter."
But what about all those imaging tests with the cute names like cats and pets? If you have a friend who had those as part of follow-up treatment after cancer, you may want a machine to tell you all the cancer is gone. If you are uninsured, you may suspect that the doctor isn't ordering those because they are expensive. No, your doctor is following the clinical guidelines for appropriate follow-up care. The only routine imaging test recommended is a mammogram.
What has happened since your friend had all those tests is that studies have found they are not effective in saving lives and that many tests add to the life-time amount of radiation you are getting, which ironically could lead to another cancer. By the time a recurrence is large enough for the scan to pick up, it is sending out other signals like pain or abnormal values in blood work. In some cases, survivors are tested more frequently if they are in a clinical trial or research study, but most breast cancer survivors in Stages I, II, or III do not need routine scans.
As a breast cancer survivor, your job is to show up for every scheduled physical. How often you have them will depend on the stage of your cancer and how you responded to treatment, but the guidelines say you should be checked at least every six months, so speak up if you are not scheduled for an appointment every six months for the first three years.
At your visit, the doctor will poke on your liver, examine your scar, feel all your lymph nodes, and listen to your lungs. You will receive a thorough physical exam to catch swelling or lumps that you may not notice. Your doctor will also ask you questions about other possible symptoms of a recurrence. Blood work will show if there are problems with your liver, lungs, or bones--three of the most likely places for breast cancer to metastasize. If any worrisome symptoms show up, the doctor will then order the most appropriate imaging test.
The other part of your job as a breast cancer survivor is to report any pains or unusual physical symptoms to the doctor between scheduled visits. Often women don't want to worry the doctor with that ache in their bones. They tell themselves that it must be too much bending in the garden. That cough is probably just a chest cold. Maybe the problem is something minor. If your pain isn't acute, or if your cough is just like the cough your toddler brought home from preschool, then you could wait a week or two to see if it goes away. But most muscle aches or viruses will resolve in a week or two, so call the doctor for any problem that lasts longer than that. Ask your doctor for some guidelines about what to look for and when to call.
In practice I found that I had more than enough follow-up scans and appointments. Because I was at high risk for a recurrence, my doctor had me in for a bone scan the same day that my blood work came back with a slightly elevated value often associated with bone metastasis. Everything was fine, and my next blood test was back to normal. When I called the doctor about a severe headache, he sent me to the emergency room for a CT to look for spread to the brain. It turned out the headache was a reaction to a medication. Between annual appointments with my primary care doctor, my surgeon, and radiation oncologist, and quarterly appointments with my oncologist, my first three years out of treatment, I had routine appointments every two months, and other appointments as needed. After five years, I went on an annual schedule with the oncologist and primary care doctor, which I schedule in the spring and fall.
Finding the balance between putting cancer behind you and being vigilant for signs of recurrence is tough. It's easy to get stuck in fear. I can't tell you that I didn't have many fearful moments following my cancer treatment. In 1999, most people with my type of cancer were dead within three years. In my situation, worry was a rational response to the facts, but living in fear and worry burns the energy needed for recovery. For most breast cancer survivors today, the odds are greatly in their favor.
Post-treatment is a time for faith. Putting faith in Providence, God, medical treatments, or your body's own healing power helps when fear stabs and immobilizes you.
I found making long-term plans helped. Planting bulbs in the fall was an act of faith. I needed to believe that I would see them bloom in the spring. I've known other survivors who went back to school to get the degree they had always wanted. Others take up a hobby or learn a skill they had always wanted to try.
In October while I was still in treatment, my husband and I took a step in faith as we made plans for a trip to Hawaii in March. It was our first trip to a tropical island, my first experience with snorkeling. Floating in the blue water with brilliant yellow fish flashing by, wonder and joy overwhelmed me. I was alive. Months of treatment had brought me to that amazing moment. I didn't know if I would have another year or an another eleven years, but for that moment, I was filled with gratitude.