For those of you who are just starting the journey, you may want to put a note in your journal since you most likely will be preoccupied with the current treatment of your breast cancer and can’t even begin to think of a recurrence at this moment. However, if your cancer treatment is completed and you feel an unexplainable anxiety even though your trials are apparently over, read on.
These feelings are common and occur, in part, because the end has come to the frequent visits with your various doctors, which can serve to comfort — giving you the tangible evidence that someone is watching over you and your health. But, aside from that, you may be struggling with the fear of recurrence that many women experience at this time. Remember, during the treatment planning process, you want to develop a plan to optimize your chance to a cure and to carry out that plan. When done, it is time for you to go on with your life. For some women, this means putting the whole process behind them, not allowing the experience even to enter their thoughts. But, for many women, life cannot ever be the same again. These women feel that they must do something to give the cancer meaning in their overall life experience — such as becoming an advocate for other women who may be suffering. Breast cancer enables major changes to take place in your life, whether they come in the form of helping a new friend or whoever, or another activity which may create that meaning or sense of purpose for you. But, whatever you do, it is important to leave as much of your fear of cancer behind as possible.
Once a woman has breast cancer, there is an underlying fear of recurrence. A patient of mine once said, “Don’t you realize you are never cured?”. I said, “No, that’s not true; women are most often cured, but none are ever absolutely sure.” Unfortunately, some women do have recurrences, even after they have done everything they are supposed to do to prevent it.
But once you and your treatment team have done the best job possible, you must commit to continue on. Although this may be different initially, it becomes easier as time passes. I am often asked how a cure is defined. “Is it five years or ten years without recurrence?” The truth is that there is no magic length of time, although each of these anniversaries is very welcome to any breast cancer patient and her doctors. If a woman’s cancer is destined to recur, over 75 percent will do so in the first five years following diagnosis, and over 90 percent will recur in ten years.
There is tremendous controversy regarding how much and what kind of surveillance is necessary following the treatment of breast cancer. How closely would you be following for recurrence and by whom? Since you are most likely being treated by several team members (surgeon, radiation, oncologist, and medical oncologist), once your treatment is complete, you should discuss with your team who is the leader and who will order future tests for you.
At the least, you should be examined by a physician, usually the same examiner, every six months. If breast conservation with radiation, or lumpectomy alone, has been your local treatment, I recommend that you have a mammogram approximately six months after completion of your radiation or surgery. This serves as a new baseline that future test results can be measured against. You should then have a mammogram repeated on an annual basis. If you have had a mastectomy with or without reconstruction, the tissues just beneath the skin and axilla (armpit) are the areas of possible local recurrence, and a physical exam is all that is necessary for follow-up in your case. Although rare, it is important to discover local recurrence as soon as possible, and that is what these guidelines I am sharing are aimed at doing.
There is also controversy about how much testing is necessary to look for a systemic relapse. If you are on protocols testing new drug regimes, there may be set schedules for doing blood work, chest X-rays, and bone scans. I don’t recommend performing bone scans, CT scans, MRIs, etc, as routine follow-up if you are asymptomatic (without symptoms) because (1) these tests are expensive; (2) they expose you to radiation; and (3) studies show that finding a systemic recurrence a few months early, as these tests allow you to do, does not affect your further treatment or response.
Some oncologists order periodic blood tests that can reveal abnormalities with bone and liver function. There are also several markers in the blood that often rise with systemic recurrence, and which doctors can measure. Two marker blood tests that physicians widely use are the carcinoembryonic antigen (CEA) and the CA 27.29, also known as CA 15-3. Although the policy at our centers has been to order these blood tests every six months, I have a certain amount of ambivalence about this. My experience has been that a clear, incremental rise in the CEA or the CA 27.29 usually means impending systemic relapse with metastatic disease. Presently, my philosophy and approach for women with systemic relapse is palliation, which primarily deals with treating symptoms, prolonging life, and optimizing quality of life. It is difficult to treat a woman with systemic chemotherapy when she is asymptomatic except for an abnormal blood test and the quality of her life as excellent.
As part of everyday living and aging, we all experience a certain amount of achiness and fleeting intermittent body pains. Once you’ve been diagnosed with breast cancer, every new ache and pain can bring up the fear of recurrence. I suspect no woman ever completely gets over this fear, but time seems to make it more bearable. My general rule is for you to regard any new ache or pain for what it probably is: an ache or pain not related to recurrent breast cancer. Treatment is usually a mild anti-inflammatory and the tincture of time. If a pain persists and increases over a three-up to four-week period, then it is probably important for you to see your doctor. However, even with this rule, it might be helpful for you to know that a majority of the more significant pains still turn out to be unrelated to the cancer.
It is very important to discuss follow-up with your physicians. Determine who is in charge and what is to be done in the years to come. Your return visits to your doctor, which once were a comfort, now can be traumatic because of their association with last heartache and pain. Knowing what to expect helps. Is it acceptable to be followed by your primary care physician only? I think so, as long as he or she is comfortable doing thorough examinations for local recurrence.
Once you have had breast cancer, you join a large group of women, well over two million strong, who are survivors. Your life will have changed in many ways forever. The way you choose to cope with being a survivor and meeting the fear of recurrence head-on will greatly influence the quality of the rest of your life.