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Cancer treatment can make you sick. It's tiring, frightening, and expensive. So it's no wonder that many people will count the minutes till treatment's end. But Diane Blum, Executive Director of Cancer Care, Inc., reminds us that in addition to looking forward to the end of treatment, it's important to understand that this time will introduce new and often unexpected challenges. Cancer Care is a nonprofit agency that provides educational, emotional and practical support to people with cancer, and Diane Blum has worked for twenty-five years counseling people at all stages of treatment and recovery. Below, she talks about some of the challenges that patients face when cancer treatment has ended.
How many people who have been treated for cancer live with the fear that the cancer will recur?
Everybody. It's kind of the elephant in the room. It's always there. And I would say the major factor that makes this fear of recurrence recede is time. The longer you get away from it, the less you think about it. But a lot of people experience great anxiety at the completion of treatment. Treatment makes you feel like you're doing something-you're getting treatment, you're seeing doctors, people are watching you-and then you're done with treatment and you're on your own with your body, which can be frightening. Your body betrayed you once, so it could betray you again.
There are major cancer centers in this country that on the last day of a patient's treatment will say, "See you in three months." That's it. And that approach is not my recommendation. I think that staying in touch with the medical team after treatment is very important.
Is there a level of fear of recurrence that you think is healthy?
Fear of recurrence that makes you vigilant is good. So on one end of the spectrum there are those who deny that anything bad can ever happen to them, and on the other there are those who let worry and pessimism dominate their lives. Someplace in the middle is what we would want to aim for. You want people to do the follow-up care that they need and to be aware of their bodies. And if you've been treated for cancer, it's perfectly normal to get worried about normal, everyday symptoms, like a stomachache. Hopefully you have a relationship with a physician that you can call and discuss any symptoms that you're worried about.
Also, we often see that people lose touch with their cancer physicians after treatment. I know a woman who had breast cancer, who, eighteen years after her treatment started having back pain. She was treated for a year by chiropractors. Nobody ever considered that she could have metastatic breast cancer. Had she been seeing her cancer physician on a yearly basis, the cancer might have been found sooner.
What are some suggestions for coping better with fear of recurrence?
How people cope and manage varies tremendously on who they are. I get upset when people are told that they have to take charge of their care in a particular way, or feel a certain way, or do this and do that. You really have to look at what people are comfortable with, what their capabilities are, and what their resources are. Some suggestions for managing after treatment might work for you and some won't. But what does work is really the question to answer. Most people will be able to tell you what gives them some pleasure, some release, some relief, and some support. Most people will be able to identify that. And that is the most important question to answer first in figuring out how to cope with the challenges of life after cancer. There is no "one-size-fits-all."
In general I think that it helps to be educated about your cancer, and have some understanding of how you can expect to feel after treatment, and what you should be watching for in terms of any recurring symptoms. A lot of people worry that they're going to become hypochondriacs. People want to understand what the right balance of concern is.
It's important to be educated about what you should be doing, what kind of tests you should have, and what kind of schedules you should be on after treatment. When should you be seeing a physician and who is that physician? Knowing these answers helps with the fear, and helps you feel more oriented after treatment.
Do you think it's helpful or harmful to think about a coping strategy before treatment is over? What should people be anticipating?
People put an enormous amount of energy into thoughts about the end of treatment. And you don't want to negate that for them, but you do want to help them anticipate some of the feelings they might feel when it's over. You will feel better when it's over, but doctors always underestimate how long it takes to feel better. So people are often tired after months of treatment. It's going to take a few months. You're not going to feel better the week afterward treatment. I always tell people: Give yourself a break. It's going to take a bit longer than you think. Try and pace yourself. There are good days and bad days. You might really feel well for a few days and then you might not feel so good again. Fatigue is one of the big issues post-treatment, and there will be days when you just want to go back to bed and rest.
The other thing that often surprises people after treatment is that all the problems that were there before treatment return. Nobody enters cancer in a vacuum. Sometimes problems go on hold while they're being treated, and must be faced after treatment.
What role can family play after treatment?
Some families want everything to be normal right away. Others go on treating the person like a patient. We hear both sides, and each can be problematic. The ideal is to gradually move to feeling better and doing more and more as you can, with good communication and patience among family members.
Cancer is often a life-changing experience. Are people ever surprised by what they learn from this?
There are lots of people who tell me that having cancer is the best thing that ever happened to them. That it changed their perspective, made them more appreciative, and that they have a different understanding of the world and their relationships. Often they say that they didn't know what counted before. I wouldn't wish cancer on anybody, but many people do see it as something that makes them appreciate their lives more. When you're healthy, you tend to take things for granted. There's nothing like a life-threatening situation to make you appreciate what you've got.
