Learning to Manage Cancer

By Erica Heilman

Many people say that receiving a cancer diagnosis is like being punched in the stomach. It leaves them feeling helpless, hopeless and in despair. In the midst of this extreme emotion, the work of managing the cancer begins. Patients and their families are suddenly faced with the task of learning about a complex disease to help them make critical decisions about treatment. The process can seem impossibly complicated, and for many it is hard to know where to start.

Diane Blum is the Executive Director of Cancer Care, Inc., a national non-profit organization that provides free, professional help to people with all cancers through counseling, education, information and referral and direct financial assistance. "We don't provide medical advice, but we can help people understand their options," Blum says. "If a person calls up and says, 'I just don't know what to do,' we can help them." Below, Ms. Blum talks about the challenges that face people newly diagnosed with cancer, and how to begin to make effective treatment decisions.

How do most people respond to a cancer diagnosis?
Most people are shocked by it. There is a subset of people who have, in some ways, prepared themselves for it because of a strong family history or a symptom that has persisted for a long time that started to enter their minds. But most people are so shocked they have a hard time concentrating on the physician's words after that. It takes their breath away.

Also, nobody enters the diagnosis of cancer in a vacuum. Everybody's got problems in their life and things that they're dealing with already. A lot of people will say, "I don't have the time to deal with this. I don't have the energy to deal with this." It's also hard to be told you have cancer without thinking you're going to die. Even if the prognosis is very good, people often respond to it as though it is a potentially fatal illness.

What are some of the first steps you see people take after diagnosis?
Today, most people seek out information right away. And it is often a family member who will first get mobilized. They will start researching the disease and talking with various organizations. Often the family member has more energy for it at first.

Is this initial stage of collecting information overwhelming?
Yes. There's been enormous progress in cancer treatment, and there are lots of different ideas about how to treat. So with more options to choose from, there are more considerations to be made by the patient. And this puts an enormous burden on the person who is diagnosed and those people close to him to try and make these decisions when there aren't always the right resources there to help them choose.

What are some important questions to ask your doctor?
You may be seeing several physicians in order to get some different opinions. Some good basic questions to start with are: What kind of cancer do I have? Where is the cancer at the moment? Has it spread? What symptoms will it cause? What kind of tests do I need? What are the treatment choices? What are the different side effects? How long will it be before I know if my treatment is working?

Do you have any tips for people during doctor visits?
We really recommend that you have somebody with you, that you take notes, and that you write down your questions beforehand for meetings with your doctor. Ask your physician if he or she e-mails because many of them do now. Really try and use the small amount of time you have effectively and understand ahead of time what you need to know.

I also recommend that people take tape recorders with them. Some physicians don't like that, but others are perfectly happy. There is lots of data that shows patient satisfaction and compliance are really enhanced when they a tape their consultation and follow-up visits.

What are some considerations in choosing a doctor?
First, cancer patients have very long-term relationships with physicians. It makes sense to have somebody who you have some degree of comfort and chemistry with. But you also want to make sure that the physician has some skill in that area. If you have breast cancer, you should be seeing a breast surgeon. You shouldn't be seeing a dermatologist or a general surgeon. There should also be somebody who is coordinating your care. A lot of people go from physician to physician with no one really managing this process.

Who is that point person?
In the best of all worlds, you had an internist who is trying to manage some of this for you or the medical oncologist fills that role. But there is no model for who should be managing this. But once your treatment starts, there should be somebody who is in charge and is coordinating the care. And good, quality care in the year 2003 should be interdisciplinary. The woman with breast cancer, for instance, should be having her care discussed by a surgeon oncologist and radiation oncologist. Social workers, nurses, health educators, nutritionists, chaplains-there are lots of people who make up the team, and one person from the team should be coordinating the patient's care.

What advice would you give someone overwhelmed by the process?
They can certainly call us at Cancer Care. We have a professionally trained staff with a lot of experience in oncology that can help people get oriented, and help them understand their options. We also try to educate people about clinical trials, which sometimes can be your best treatment.

What role can support groups play for people newly diagnosed with cancer?
If you're the kind of person who wants to be in a support group, they can be very helpful. People often will tell you when they have cancer that they feel like they're crazy. When you find a whole room full of people who feel exactly as you do, it's enormously validating. Also, there really is something in talking to somebody who has been through it. They can offer different perspectives and coping strategies.

More than 30 years of psychosocial literature in cancer show that most interventions-things like individual counseling, support groups, or educational programs-increase a person's sense of control, self-esteem, and ability to participate in their own care.

Does managing treatment get easier for people with time?
People have really different ways of coping. But the point at which most people really settle down emotionally is when treatment actually begins. Most people feel better when they're doing something, and after they've made some decisions. I think it does get easier.

There are also crisis points, of course. There are times when the world gets turned upside down again. But as you move through the treatment, like everything else, it develops some kind of routine qualities. Like anything else in life, you learn how to do it. You learn how to be a patient. You make friends in your setting.

People do incorporate it into their lives. Does anybody want to have cancer? No. But people do live much better today with cancer than they used to. There are much better ways of managing the symptoms and side effects of the disease. There is much more support. There is much more openness. Most people go to work. They maintain their activities of daily living. And most people will tell you that they do learn how to live with it. It is amazing the degree to which people are able to cope.