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News Archive - Progress Newsletter Fall, 1999 Online

A Key in the Gateway of Care

The University of Michigan Comprehensive Cancer Center recently opened a Late Effects Clinic to address the long-term survivorship issues of U-M pediatric patients. Following is a recent interview with Marcia Leonard, R.N., P.N.P., nurse practitioner in the clinic and the driving force behind its creation.

Why was the Late Effects Clinic started?
When a pediatric cancer patient finishes treatment, they are seen monthly for the first year to eliminate the worry of relapse. In the second year they'll usually be seen every three months and in the third year every six months. After four to five years we'll switch to a yearly visit. For many patients these annual check-ups become a social visit or a request for adult medical care as they move beyond their pediatric years. We find we are unable to address their needs within our regular clinic where we have kids who are desperately ill. Our post-treatment kids would only get a physical and blood work, or some would say, 'I like coming, I like visiting, but what are you doing for me?' In reality, there are a lot of medical issues beyond the cancer going on with these kids. We're finding more and more that they are left on their own to cope, with physicians who are unfamiliar with their cancer treatment history.

How does the Late Effects Clinic help these patients?
Our work begins before they arrive for their clinic visit. We've learned that with children we need to know the cumulative dosages of all of their therapies. This is not always easy to recreate, but it is key to their follow-up care. Some patients treated over a decade ago with anthracylines may be predisposed to heart problems. This is a problem, because I love all these patients we have treated, I've known them all their lives but I'm not a cardiologist. They need to be seen by a cardiologist. In the Late Effects Clinic we function as their gatekeeper. We can identify problem areas based on their treatment history and direct them to the specialist who can care for them.

When the patient then visits another provider, how do they explain the issues the Late Effects Clinic has identified?
Most of our patients were very young when diagnosed, but even teenagers do not remember the details of the experience. Every Late Effects Clinic patient receives a personalized summary of their treatment history and our recommendations for their present and future care. The summary includes their age when diagnosed, the total level of radiation received, doses and known effects of drugs that were used and any problems that have occurred. Our recomendations are instructions based on the problem areas we've identified. Each individual is told when to return for a follow-up visit, and this will vary. In older patients we may leave it open - check back in with us in three years or if there is something you need sooner let us help you. We continue annual visits for younger kids. Similar information will also be sent to the patient's healthcare providers.

What other post-treatment concerns arise?
In the Late Effects Clinic, instead of focusing only on the cancer we are looking at the whole life situation. Our focus has changed. When they were first diagnosed our major concern was their survival. But survival comes at a price for these kids. Now, our whole mindset is on these patients and what's going on in their lives. Some may feel isolated from their peer groups due to their cancer experience and some may have growth and fertility concerns. Many are now having children of their own and want to know if their cancer or cancer treatments will affect their babies. We help them find some answers. We can't cure everything, but we can make everything a little bit better.

The Pediatric Late Effects Clinic is open to U-M pediatric patients who have completed their therapy five or more years ago. For more information, please call (734) 936-9814.

Rachel Pixley Rachel during treatment
Four year-old Rachel Pixley just prior to treatment for rhabdomyosarcoma of the eye orbit Rachel during treatment

"I was very scared when I came for my visit in the Late Effects Clinic. I came with my friend and my boyfriend. I was grown up now and did not have mommy and daddy to hold my hand, so I was nervous. When I got in the room, I remembered Marcia and she made me feel at home."
-- Rachel Pixley, age 18 14-year cancer survivor

Rachel today at 18

Rachel today at 18.

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