|CANCER & TREATMENTS FOR CANCER CENTER PATIENTS PREVENTION & RISK ASSESSMENT CLINICAL TRIALS & RESEARCH LIVING WITH CANCER|
U-M CCC - Progress Newsletter Spring 2004 Online
“It was just a little red bump on her leg,” recalls Mary Ann Fischer about the beginning of her daughter Hannah’s struggle to overcome melanoma. “Kids get bumps.” When she asked her pediatrician to take a look, she was assured it was not a concern. But it was growing. Several consultations with a number of doctors in her area yielded the same answer: it was growing because Hannah was growing. Spurred on by a mother’s intuition, Fischer pressed to have the bump removed. Ten days later, a pathology report was returned, confirming melanoma. Hannah was just five years old.
For Hannah and the Fischers, countless trips to numerous doctors at four different institutions preceded their first visit to the University of Michigan Multidisciplinary Melanoma Clinic. Additional surgery including a sentinel lymph node biopsy and lymph node dissection revealed melanoma in two of Hannah’s lymph nodes. “I wish we would have come to Michigan right from the start,” says Mary Ann Fischer. Hannah’s disease called for treatment beyond surgery to check the cancer’s recurrence. The most common approach is the use of the drug Interferon, but at Hannah’s young age, other institutions were reluctant to provide Interferon treatment. The team at Michigan believed the approach was appropriate and began her treatment immediately. Although she did experience the expected side effects – flu-like symptoms, muscle aches and headaches – she tolerated the regimen well. “She’s a strong girl,” says Fischer.
For Ken Kraemer and his wife Bernadine, the journey to U-M was more direct, but took longer. A suspicious spot on Kraemer’s left temple remained virtually unchanged and represented “only a nuisance” for nearly eight years before he decided to have it removed in 1992. The spot returned the following year, and Kraemer sought another consultation. “The doctors weren’t sure what it was,” Kraemer recalls, “so they referred me to Michigan.”
It was only after the growth was removed and pathology reports confirmed melanoma that Kraemer and his wife Bernadine worried. “I never questioned that all would be ok,” says Kraemer, “but I think my wife was more concerned.” Additional surgeries were required to remove both surrounding lymph nodes and any potentially cancerous areas bordering the melanoma. Thankfully, in Kraemer’s case, no evidence of spread to the lymph nodes was found.
The surprising face of melanoma
Hannah and Ken are only two of the over 1,100 new cases seen in the U-M Cancer Center’s Multidisciplinary Melanoma Clinic each year. Although their stories differ, they both demonstrate the importance of vigilant self-screening and timely diagnosis and treatment. One American dies every hour of melanoma. The number of new cases continues to rise faster than any other type of cancer. Currently, one in 37 people born in the U.S. this year are projected to develop either an invasive (below the top skin layer) or in situ (in the top layer) melanoma over their lifetime. The presence of any one of a long list of factors –family history, eye and hair color, skin type, early-age sunburns, the presence of many normal moles or any irregular appearing moles— can significantly increase that risk. In 2004, 95,880 new cases of invasive or in situ melanoma will be diagnosed in the U.S. – over 1,600 in the state of Michigan. Just how rare is Hannah’s case? Only about 3% of melanoma cases occur in patients under the age of 20, and an even smaller number are found in very young children. However, as reported in the New England Journal of Medicine (Vol. 332 No. 10. 656-662), in up to 60% of cases, decreased survival rates among children have been attributed to delays in diagnosing the cancer, most commonly due to physicians being hesitant to recognize melanoma in children. (When found early, most melanomas are curable. Please check your skin regularly using the self-screening card.)
Many people assume melanoma afflicts only “sunworshippers” who scoff at sunscreen. Mary Ann Fischer is quick to correct that myth: “Melanoma isn’t as simple as that. We’ve always been a very sun-safe family, and always use sunscreen,” she says. “If it can strike a perfectly healthy little kid like Hannah, we all need to learn from that.”
In the Fischer family’s journey through diagnosis, treatment and recovery, they discovered that one group with a lot to learn is doctors. With great frustration, she recounts a conversation with a friend whose husband had just been diagnosed with melanoma. “My friend shared Hannah’s experience with their doctor, who told her emphatically that there has never been a 5-year-old diagnosed with melanoma – it was impossible.” This anecdote, along with Ken Kraemer’s experience, reveal the importance of remaining vigilant not only in checking skin for problems, but in continuously following up with doctors to consider every possibility. As Fischer puts it, “follow your instincts and keep pushing until you’re satisfied with the answers.” For both the Fischers and the Kraemers, those answers were finally found in the Multidisciplinary Melanoma Clinic at Michigan.
A typical day in the U-M melanoma clinic
“There’s no such thing,” says clinic director Timothy Johnson, M.D. “Because every patient is different, every day is unique.
That’s why comprehensive care in a multidisciplinary setting is so important. There are no “one size fits all” answers in treating cancer. The best treatment is defined by how well it is individualized to the patient’s specific case.” But certain constants define melanoma care at Michigan, and help explain why Hannah Fischer and Ken Kraemer – along with six in ten melanoma cases diagnosed in the state – eventually came through the door of Dr. Johnson’s clinic.
Clinic coordinator Amy Young-Sereno, R.N.,B.S.N., describes the atmosphere of the clinic as controlled chaos. “It might appear like that, but behind the scenes, everything we do is designed to make the patient’s experience as stress-free as possible. We understand that patients are full of questions – and anxiety—and we work hard to make sure that every question is addressed and that we use the patient’s time wisely.” Young-Sereno notes that much of their effort takes place before the patient even arrives for an appointment.
“The first person you encounter when you call our clinic is a registered nurse, who not only handles appointment scheduling but can answer questions about the disease and, hopefully, alleviate some initial concerns.” The nurse takes a health history and begins to assemble the pieces necessary to make the most out of the initial clinic consultation. The clinic staff coordinates with the referring physician to ensure that all necessary records and test results are sent to the clinic nursing office before the appointment, often making frequent follow-up calls when records don’t arrive in time. As needed, the clinic nurse may also help the patient connect with the Cancer Center’s social work staff to address any psychosocial needs or concerns.
The patient’s prior test results are scrutinized by the clinic’s dermatopathologist who renders an expert opinion on the diagnosis before the clinic appointment. This is a critical step in determining what additional tests, and ultimately what treatment plan, will be re-commended. In a significant number of cases – about 10-20% – the original diagnosis and subsequent treatment plans are altered somewhat after the U-M pathology review and consultation have been completed.
Clinic patients first see a dermatologist trained in skin oncology for a thorough skin exam and further education about their melanoma diagnosis and management. At this point, any additional surgery is scheduled. Advanced cases are reviewed by the clinic’s multidisciplinary tumor board, consisting of surgeons, medical oncologists, radiation oncologists, pathologists, geneticists, nurses and a specialized psychosocial team, all focusing on melanoma. As with all multidisciplinary care at the Cancer Center, this allows a team of experts to address cases from every possible angle, ensuring a comprehensive diagnosis and plan of attack.
“In the clinic, nothing’s more important than the peace of mind of our patients,” says Johnson. “A cancer diagnosis is perhaps life’s cruelest wake-up call, and our staff is constantly aware of the psychological impact cancer has on the patient and his or her whole family.” In Hannah’s case, the staff knew that although she might be too young to understand the implications of cancer, her folks knew the risks. Recalling their first clinic visit, Fischer recounts how several physicians consulting on the case noted that they too were parents, and could understand the difficult situation they faced. “Everyone was incredibly accommodating and caring.”
Ken Kraemer tells of a similar clinic experience. “What stands out in my mind is the quality of the people. From our initial check-in to the very last moment, they could not have been more friendly, capable and interested in my case.” Kraemer also recounts the concern he and his wife felt prior to coming to U-M. “This was our first encounter with the hospital, and we were overwhelmed by the number of people being treated there. When cancer strikes you, it’s easy to say ‘why me?’ or ‘I’m the only one going through this.’ Well, that’s not even close.” Seeing so many people going through what they were facing was comforting to the Kraemers, but also raised additional concerns. “We wondered whether, with so many patients, we would be treated like a number. But just the opposite proved true.” The clinic staff also keeps in mind the important role of the referring physician in the long-term wellbeing of their patients. “We update our referring doctors on the status of patients after surgery,” says Johnson. “They play a key role in the long term success of the patient. That doctor is our partner in melanoma care, so we want them to be reassured about what we’re doing from the very start.”
Facing the Future
Hannah celebrated her eighth birthday in February, cancer free and, according to her parents, “a happy-go-lucky kid.” As for Kraemer, although a fan of the state’s other Big Ten university, he made a pact with his wife. “I told her, ‘on the day I get the all-clear, I’ll stand on the steps of the hospital and sing the Michigan fight song.’” He did just that, and recently celebrated the first anniversary of his Michigan serenade. For both families, the risk of melanoma returning is real, but they remain optimistic. “We’ve found that the key to success – before, during and after treatment – is to stay upbeat and 100% positive,” Kraemer says. “It’s easier said than done, but good things happen when you do.”
For more information on the U-M Comprehensive Cancer Center’s
Multidisciplinary Melanoma Clinic, call the Cancer AnswerLine™
at 1-800-865-1125 or visit their web