A Conversation with Kimberly Frederick, MSW, LCSW
Manager, Information Resource Center, The Leukemia & Lymphoma Society


Q: The emotional aspects of cancer chemotherapy are often overlooked. What feelings should newly diagnosed people expect?

A: With a cancer diagnosis there’s that initial shock. Once people start to adjust, they will ask, what is my best treatment option? [Some people never completely adjust but they may adjust enough so they can face what comes next.]

Typically, chemotherapy is one of the major treatment options. Knowing this can bring relief—they’ve figured out what they’re going to do. Only later do people start to deal with both the physical and emotional effects of chemotherapy.

Q: What are some of these emotions?

A: A diagnosis of cancer can bring uncertainty, fear of suffering, and anxiety over the prospect of therapies. These may be as hard to handle as the disease itself.

The realization that chemotherapy will cause changes in a person’s life can prompt a range of feelings. These include fear, depression, anxiety, stress, hopelessness, denial, mood swings, irritability, and insomnia. Also, the hormonal and chemical changes caused by chemotherapy may have an emotional impact.

Q: So emotional distress when facing chemotherapy is normal?

A:Absolutely. It’s important for patients, family, and friends to realize that emotional distress is not something people can "will" themselves out of, or talk themselves out of. It’s a natural result of a significant life-altering issue such as a cancer diagnosis.

Q: Why are the emotional aspects of chemotherapy sometimes ignored?

A: The physical side effects of chemotherapy are more visible so doctors address them first. Hair loss, nausea, fatigue, or mouth sores are obvious. Also, physical side effects command a lot of attention because they can be serious, even life-threatening.

For some people, the physical side effects are easier to talk about and may be more socially acceptable. But the emotional side effects are very real.
It’s important for patients to understand that emotional effects can have a tremendous impact on the success of their chemotherapy treatment. It’s important for them to address them as soon as they come up.

Q: Why do you think some people find it easier to talk about the physical instead of the emotional effects?

A: It depends on the individual. People may want to appear strong for others.
Older people are more apt to avoid saying how they’re feeling because they’re of the generation that thinks the doctor knows best. So they’ll call our Information Resource Center saying, "I don’t want to bother my doctor. I don’t want him or her to think I’m not a good patient."

What I say is, "You’re choosing to have this doctor treat you. Your doctor is the expert on treatment, but you’re the expert on your body. You know what feels right and doesn’t feel right. You need to have an open dialog with your doctor to maximize your quality of life. What’s important is that your doctor is hearing your concerns. Your focus shouldn’t be on how your doctor might interpret or judge those concerns."

Q: Can you name some physical side effects that evoke strong feelings?

A:One is hair loss. Although there are medications that help reduce hair loss, most patients undergoing chemotherapy still lose a good portion of their hair. No one looks forward to losing their hair. Some people take control—shaving their head, wearing a hat, scarf, or wig.

Women, who are often defined by their hair, may suffer more emotionally from the baldness than men. It’s important to remember that hair will grow back. It may come back a little thicker or curlier, but it will come back.

Chemotherapy commonly produces a feeling of exhaustion. If people have to take a leave of absence from work, or they’re used to doing certain activities they’re not able to do, there is this sense of loss of independence.
Some people adapt fairly easily to this reality. For others, the fatigue is difficult to handle. The difference has a great deal to do with each individual’s personality style. There are excellent medications that patients can talk to their doctors about that help with fatigue. Changes in the diet, rearranging their priorities, and ensuring they get adequate rest can help.

These reactions are unpleasant but they are usually temporary. They’re more exaggerated during times of aggressive treatment and then subside completely, or they can come and go during periods of maintenance therapy.

Q: How can people navigate strong emotions during chemotherapy?

A: It depends on each individual’s coping mechanisms, and their sources of support. If they have a supported environment prior to a diagnosis, then it’s important for them to pull from that support, whether it be family, friends, or colleagues.

If someone is alone, and they don’t have strong inner or outer support, it can adversely affect them. That’s why it’s important for them to know about organizations like The Leukemia & Lymphoma Society, where we have family support groups available. We have chapters all over the country. We also have a peer-to-peer support program, where we can match them up over the phone with someone who is living with the same diagnosis. There’s a lot of support out there. If they call here, we will get them connected. The Information Resource Center of The Leukemia & Lymphoma Society is available by calling 800-955-4572 and is staffed Monday through Friday, 9 a.m.-6 p.m. EST. A master’s degree-level nurse, public health specialist, or social worker answer questions. For more information on The Leukemia & Lymphoma Society, go to www.lls.org.