Counseling and support needs of patients and their families

Helping children deal with cancer in a parent

The degree to which children communicate their concerns to their parents varies with age. Children in the third through about the seventh grade worry a lot, and they’re pretty open about it. Children in the upper grades worry a great deal too, but they don’t verbalize it. It’s particularly uncomfortable for teenage girls when their mother has breast cancer. They’re just developing breasts, and it’s embarrassing for them that everybody’s talking about breasts.

Children need just enough information, but not too much. They need to be spoken to directly about what’s happening to mom and the family, otherwise they may conjure up horrible thoughts about what’s going to happen. They also need to know that a lot of moms receiving adjuvant therapy are going to be fine for a long time.

It frightens children to see their mother sick, particularly when they lose their hair. If mom isn’t going to feel well while undergoing treatments, children need to know that while she may feel poor for a while, she will feel better after the treatment is completed. Moms handle hair loss in different ways, depending on their own family situation. Some kids help mom cut off her hair and some help their mother throw the hair onto the bushes in the spring so that it gets made into bird nests.

— Anita Rush-Taylor, RN, CCRC

Counseling patients about chemotherapy in the metastatic setting

When we talk to patients with metastatic disease, we always try to help them understand that there are many options. Part of the way we do this is by presenting them with the idea of a tool kit. We let them know that we have many different tools in our kit and will pull out the right one for whatever job we’re trying to accomplish at that time.

The doctors whom I work with are quite clear with patients and communicate to them that once their disease recurs, it’s not curable as we know it today. They focus on the fact that we’re continually working on new things to try to control the disease for as long as possible with as good a quality of life as possible. That is the big thing — we are going for quality and not quantity of life. Quality is so important.

For some people, that is what they want to hear. They want to know from the beginning where they are. But we have patients who have come to us for second opinions who haven’t been told about metastatic breast cancer and are totally crushed when they learn that it is incurable. However, ultimately, I think patients appreciate honesty and will ask questions like, “What kind of time do I have?” It is a long visit when a patient comes back with newly diagnosed metastatic disease.

— Anita Rush-Taylor, RN, CCRC

Talking to patients about stopping late-line chemotherapy

I talk to women about the idea of stopping chemotherapy at some point, and these discussions begin when they’re first diagnosed with metastatic disease. It is also something we talk about essentially every time the disease progresses and we need to shift to a different therapy. Stopping therapy is a very individual decision, and I need the patient’s thoughts on it.

I certainly have some patients who were clear that they were done with chemotherapy long before I thought I was out of reasonable options, and I respect their decisions. That is actually more common than women who are insistent that they need other therapy when there really isn’t anything else that I would feel comfortable providing them.

I believe counseling patients in this regard works best as an ongoing conversation and constantly revisiting the goal of helping the patient live as well as possible for as long as possible. However, that means at some point, quite simply, the drugs won’t be good enough and won’t help meet that goal. They will only make things worse by adding toxicity.

At that point, not adding more therapy would be the best way to help. When that happens, I always tell the patients, “You’re still stuck with me. My nurses and I will continue to care for you and help you with your disease. It just won’t be with chemotherapy anymore.”

— Kathy D Miller, MD

Factors contributing to effective coping with breast cancer

I believe patients who have a large support group or who can find a way to feel in control of their situations do better. I also think that patients with a strong spiritual background tend to do better. Their mindset typically is, “God will only give me what I can deal with, and He will be with me through whatever He gives me.” They tend to do better than patients who feel, “God is vengeful, and what have I done to earn this?” The patients who are able to talk about their situation and wrestle with it tend to do better.

We do not really tell patients, “If you have a positive attitude, you’ll be fine.” Rather, we provide them with things they can do like listening to their bodies, eating and drinking as well as they can, being active and trying to keep as much of their normal lives going as possible.

We have a lot of support services that can help patients work with their children and give them some place where they can talk things over. I believe having a place where patients feel safe to say all the things they don’t want to say to a family member goes a long way in helping them cope.

— Anita Rush-Taylor, RN, CCRC

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