Knowledge Makes a World of Difference
by Dr. Joyce Brothers
When Eileen Waldron was diagnosed with colorectal cancer, her first words to her colorectal surgeon, were, “Oh my God, my mother died a horrible death of the same disease.” Katherine Elwyn, MD, immediately responded, “Eileen, you are not your mother.” These words set the course for a positive patient-physician relationship that has grown stronger over the years. In providing both knowledge and support, Dr. Elwyn empowered Eileen to cope with cancer.
About a year after initial diagnosis, Eileen had to face cancer recurrence. The return of cancer can be devastating and brings back painful emotions experienced during an initial diagnosis and treatment. However, there are ways of coping with cancer recurrence.
Information provided by Dr. Elwyn, along with encouragement, enabled Eileen to take charge of her disease. She learned to cope with the return of cancer by taking an active part in the management of her disease. As a result, she gained a sense of control and became a fighter and not a victim.
When Cancer Comes Back
Recurrence typically results from the survival of tumor cells after treatment. These cells can grow into another tumor in the original site (a local recurrence) or spread through the bloodstream or lymph system elsewhere in the body.
A regional recurrence involves the growth of a new tumor in the lymph nodes or tissues near the initial location of disease. Metastatic disease means that cancer has returned in another organ or tissues distant from the original site.
While most cancer is destroyed during initial treatment or by the body’s own defense system, monitoring for recurrence is an important part of a cancer survivor’s checkups. The procedures used during initial diagnosis are often used for surveillance of recurring cancer.
Laboratory tests are generally the way physicians first suspect recurrence. After verifying an abnormal result, physicians try to determine where the disease has returned and how far it has spread. This information is then used to choose the best course for treatment.
Knowing all the sites of recurrence and finding them as early as possible is key to successful treatment. Often doctors and patients are frustrated when lab tests indicate the presence of tumor growth but their location can not be identified. Exploratory surgery is an option. However, in Eileen Waldron’s case, surgeons found a way to know where to look for recurrence.
Eileen underwent surgery to remove colorectal cancer and received radiation and chemotherapy. In monitoring Eileen’s progress, Dr. Elwyn found that a blood test, which measures the level of certain tumor markers (CEA), was elevated, suggesting cancer recurrence.
CT and MRI scans did not help find the recurrence. Eileen was very thin which made the interpretation of such tests difficult. Exploratory surgery was considered, but then Dr. Elwyn learned about a new imaging agent for colorectal and ovarian cancer. The technique used tumor-seeking antibodies to search out cancer recurrence and identify the extent and location of disease.
Dr. Elwyn and Eileen agreed that was the best option for detecting the recurrence and were hopeful that the cancer would be at an early enough stage to eliminate it through surgery.
The scan pinpointed a tumor less than one inch in diameter. This was the information Eileen and Dr. Elwyn needed to choose the surgery option. It also helped Dr. Elwyn plan and direct Eileen’s surgery.
Because Dr. Elwyn shared information with Eileen, together they were able to make the best decision for her.
“From our initial meeting, I felt very confident with Dr. Elwyn. She gave me a secure kind of feeling,” said Eileen. “She’s very reassuring and positive, and that has helped me a great deal.”
Coping with cancer recurrence
I too have experienced cancer, not firsthand like Eileen, but through my husband’s experience with bladder cancer and my father’s fight against colorectal cancer. Through those experiences, I came to understand the difficulties of physically dealing with cancer recurrence, but I also gained insight on ways to cope emotionally and psychologically.
Tips for doctor/patient relationships
- Make sure you are comfortable with your doctor.
- Make a list of questions, and don’t be afraid to ask for clarification if you don’t understand the answers.
- Ask someone to come with you to your appointment for a second pair of ears and for back-up. You may find this person will remember things that you did not and provide additional feedback.
- Report honestly about how you feel, and if problems arise, tell your doctor.
- The more cancer patients know about their disease and its recurrence, the better they can cope, both physically and psychologically. Information empowers patients to take an active role in their diagnosis and treatment.
My advice is to allow yourself to experience the succession of emotions that comes with cancer recurrence. These emotions are natural. Denial, shock, or anger may be your first reactions. You may think, “This can’t be happening to me again,” or “Why me?” You may snap at your friends and relatives and curse the world. You may also feel anxiety, fear or depression. You may think, “Am I going to die?” or “Will the treatment work this time?”
These feelings are healthy and may ultimately help your progress. They should not be suppressed or ignored and learning to deal with them will help you feel in control. Acceptance will follow, and you will find that the knowledge you have gained from your initial battles can empower you as well.
How to deal with stress
At times you may be stressed by constant changes to your life and body. Some stress is good. It may encourage you to take action. Too much stress, though, can harm your health and make you feel like you are losing control.
Knowledge makes the difference
- Knowledge can make a world of difference in your fight against recurrence. Build upon the knowledge you already have from your experience with cancer.
- Tap into resources available for information and psychological support: cancer centers, support groups, survivor groups, counseling, psychologists, etc.
- Gather information about diagnosis and treatment for your recurrence.
- Get more than one opinion, and ask lots of questions.
- Be aware of new medical advances.
Take part in diagnosis and treatment
The knowledge you gain will allow you to become more involved in the decision-making process. Taking an active part in your diagnosis and treatment will help you feel in control. Talk to your doctor about goals, methods and side effects of various treatment options. For example, Eileen Waldron felt that additional chemotherapy was important for managing her disease. When her chemotherapist was hesitant to administer it, Dr. Elwyn helped Eileen find one who would support her decision.
Doctor/patient relationship is critical
The doctor/patient relationship is critical in the fight against cancer. If information is provided by the physician in an honest and caring manner, cancer patients are motivated to keep fighting. According to Dr. Elwyn, “Doctors need to become educators as well as caregivers.”
Eileen and Dr. Elwyn have developed a special relationship that is both honest and supportive. Eileen gets much of her information from Dr. Elwyn, who willingly answers all of Eileen’s questions and provides reassurance. They are not just doctor and patient, but partners.
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This article was originally published in Coping® with Cancer magazine, November/December 1993.