You have had the date circled on your calendar for months. Maybe you get to ring a bell, or maybe the nurse and doctor just give you a hug as you walk out of the office. Either way you are done! You have finished cancer treatment and are well.
Your family and friends rejoice with you. Everyone is delighted that you will be back to your normal activities. But your happiness may be tinged with anxiety. Your attempts to get back to your normal activities may just leave you exhausted. You worry about side effects and recurrence. How do you move from being a cancer patient to being well?
Much will depend on how extensive your treatments were and what your prognosis for recurrence is, but the transition often hits some hurdles.
Cancer treatments may have left you with less energy. Surgery, chemo, and/or radiation take a toll on your body that you may have been unprepared for. In an article on post-cancer fatigue in Cure Today, cancer survivor Brenda Denzler explains, the “growing body of evidence about the biological basis of serious, long-term, post-treatment fatigue has yet to make its way into the consciousness of most oncologists, it would appear, much less into the counseling given to new patients about what to expect from treatment.”
Don’t expect to jump back into your usual routines all at once. If you have been out of work on disability, you might inquire about whether you can start back part-time. If you have worked all through your treatment, don’t expect to pick up all those volunteer activities you used to do right away. Whenever possible, allow for some extra rest. The longer your treatment lasted, the longer it will take your body to recover. Post-cancer fatigue is real, so pace yourself. It took me over a year to get most of my energy back, but even 19 years later, I find that I still need more rest than many other people my age.
You will need to watch for treatment side effects. Ideally your doctor took the time to explain your risk for lymphedema, neuropathy, or other treatment side effects. Some of these, like “chemobrain,” may have started during treatment, but new ones can crop up even years later. If you are on hormone blocker drugs as part of your follow-up treatment, you may have some side effects that can be managed if you discuss them with your doctor. If you had surgery or radiation involving your lymph nodes, you will need to be especially careful about lymphedema. Watch for swelling, and don’t just hope it will go away on its own. Call the doctor immediately. Don’t suffer in silence with neuropathy pain. Ask for a referral to a neurologist who can help you come up with a good plan to treat it. Years later, scar tissue may affect your range of motion. You needn’t worry about these problems, but you do need to be proactive if they develop and ask for help.
You need to be alert for signs of recurrence for the rest of your life. An estimated 30 percent of patients with early stage breast cancer will have it come back as metastatic disease. That means that there is 70 percent chance that you will be fine with no evidence of cancer for the rest of your life. You should try to move on with joy at your survival. However, you can’t ignore health problems that may arise. It can be hard to know when you need to see your primary care doctor or your oncologist for a cough. Is that pain in your back strain from moving furniture or a sign that breast cancer cells are growing in your spine?
Depending on your personality, you may be immediately convinced that every pain means the cancer has returned and that you will be in your grave within the year. Or you may deny that a persistent cough is anything other than allergies. One rule of thumb that I have found helpful is the two-week rule. Most run-of-the-mill health issues will get better on their own in 10 to 14 days. If a problem lingers, you need to call your doctor. Depending on the issue, you might want to start with the primary care doctor, but if the first line of treatment doesn’t work, call the oncologist. Finding the balance between constant worry and ignoring health issues may take some time.
Suppose you are at high risk for recurrence. Should you ask for routine scans? You can discuss this with your oncologist, but usually your doctor will want to see you at first every three months and will do a physical exam and blood work. That little vial of blood tells more about whether your cancer has spread than you might think. For example, abnormal levels can indicate progression in the liver or bones. If the doctor notes a problem in the physical exam or blood work, then scans will be ordered. Most doctors no longer order routine scans because research does not show they are effective for extending survival, and they expose patients to unnecessary radiation. You have to be your own “scanner.” If you notice something that doesn’t feel right, make a note of it on your calendar and call the doctor if the problem persists. Do not be afraid of sounding like a hypochondriac or bothering the doctor. The doctor is counting on you to pay attention and to be proactive.
You may have to educate your family and friends about what you can and cannot do anymore. Everyone wants you to be your old self, but you will never be the same after cancer. It may have left you with an incredible gratitude and joy in life. You cherish your family and friends with new appreciation. However, they will need some education. If you can no longer go on long hikes over rough terrain because neuropathy has left your feet too numb to be sure-footed, you and your family will need to find new ways to enjoy nature together. We often don’t want to burden people with our limitations. It can feel embarrassing to explain why we can’t do what we used to do. You needn’t tell the PTA bake sale organizer why you can’t send in six dozen cookies, but the people closest to you need to understand your limitations.
The transition from patient to survivor may be tricky to navigate, but you can do it. Be realistic about what to expect. Hug your children. Go on that trip you’ve always wanted to take. Rejoice that you are alive.
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Phyllis Johnson is an inflammatory breast cancer (IBC) survivor diagnosed in 1998. She has written about cancer for HealthCentral since 2007. She serves on the Board of Directors for the Inflammatory Breast Cancer Research Foundation, the oldest 501(3)© organization focused on research for IBC. She is a list monitor for an online support group at www.ibcsupport.org. Phyllis attends conferences such as the National Breast Cancer Coalition’s Project LEAD® Institute. She tweets at @mrsphjohnson.