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Pediatric cancer staff uses a process to bring hope

Pediatric cancer patients weather a lot, and are great teachers, says Dr. Martin Brecher, shown above with leukemia patient Brett Struble, 5, of South Dayton. (Robert Kirkham/Buffalo News)

By Scott Scanlon – Refresh Editor

Dr. Martin Brecher’s job has been more rewarding in recent years because the pediatric cancer doctor has seen a growing percentage of his young patients beat back their diseases.

Still, the road to successful treatment continues to be a challenging one.

That’s what I came away with earlier this week after sitting down with the good doctor for an “In the Field” feature story at Roswell Park Cancer Institute, where he is chairman. He also is chief of the Division of Pediatric Hematology and Oncology at Women & Children’s Hospital, and an associate professor at the University at Buffalo Medical School, his alma mater.

Brecher, 67, also serves on the Advisory Board of the Leukemia & Lymphoma Society of Western and Central New York, which will host its largest fundraiser of the year, the sold-out Diamond Ball, tonight. (To donate to the society, visit its website.) He was the society’s “Service to Mankind” award recipient in 2006.

What is it like to tell a family that a child has cancer?

“It’s probably among the most devastating pieces of news a family can receive, to learn your child has a serious illness, a potentially life-threatening illness,” Brecher said. “Some families have been suspicious. Others are caught completely off-guard, because many of these illnesses present with symptoms that are seen very often in much more common and much less serious disorders.

“There’s usually an element of shock. We tend to spend a good deal of time talking with them, even on the first visit, just so they have a sense that there’s a plan, that there is hope, and most of the time now, with most of these diagnoses, we can truly be hopeful that treatment will be successful.

“I also have come to appreciate that many families, after they hear the word cancer or leukemia, don’t hear a whole lot else that you say. I think they’re head starts to spin and I’m not sure what they absorb, but it sets the stage for a recognition that we’ve got a way to approach this...

It’s important to go over and over again, especially those first few weeks. It’s hard to think straight. The child might be feeling really ill. It’s just a whole life change, and not just for the parents. The siblings, grandparents, everybody.”

I also asked Brecher several other questions about the treatment process after the diagnosis. Excerpts are below.

Can walk us through treatment?

In pediatrics, the whole family is your patient. You’re treating the child, but the whole family is in need of assistance. So I try to explain things in terms that people understand. ... I usually tell people, ‘The first few weeks, keep a pad and pen by your bed.’ If you’re like me, your mind goes blank, but at 2 in the morning, when I’m staring at the ceiling, I think of all the things I should have asked. ... I always tell people, ‘Please ask any question that you have, as often as you need to, until it makes some sense to you.’ It’s absolutely essential to be 100 percent honest with people. This is a child, and they need to know whatever we know. If the child is old enough to comprehend things, I always encourage parents to make sure – whether it’s immediately or whether the first few days or weeks, depending on how the child is feeling – that they’re honest with them and let us know what we need to tell them. First of all, kids tend to know anyway, and if they think we’re not being honest with them, they don’t believe anything else we’re saying, we’ve kind of lost the trust.

It’s the most important thing going on in their lives right now, and if that’s the one thing they can’t talk about – because everybody’s trying to protect everybody else – (that doesn’t work well).

It’s a team approach. The nurses are critical, because they work so closely at the bedside the families. There are social workers helping the families to get the services. There’s financial burdens on the family. You miss work time. How do you address those kinds of issues? Psychology. Sometimes families say, ‘I’m not crazy, I don’t need a psychologist.’ This is not a normal situation for any family. Everybody can use some help when something like this happens.

Once you know what you’re dealing with, does chemotherapy start?

Most childhood cancers are now what we call low-grade, (and feature) localized tumors that can be treated with a local therapy or surgery. ... Very often, these cancers – even if they appear to be local by our tests – have at least a microscopic spread, individual cells that have gone elsewhere in the body. So, almost always, there is a systematic therapy required. That means chemotherapy, which can travel around the body.

Once we know the exact type of cancer, we participate in national clinical trials, called the Children’s Oncology Group, COG, which is an NCI (National Cancer Institute) clinical group for pediatric cancer. These tests may improve the outcome but, if it becomes too much, “we back off.”

There’s a lot of decisions to be made at an emotional time, when the child is sick, and there might be emotional relatives, job issues, something else. It may be a single-parent home and ‘What do I do with the other kids?’ All the issues that swirl around people’s lives these days, they’re also dealing with that. You have to walk them through, ‘What does this mean?’ ‘What are the options?’ ‘Let’s talk about the pros and cons of each.’ Ultimately it’s up to each family, or the patients, ... but they’re looking to us for guidance.

Can you walk us through how the staff at Roswell devises these plans? Do you get into a room, talk about several cases at once?

I work at Women & Children’s and Roswell and, combined, we are one pediatric hematology/oncology program. If a child is diagnosed, we may have a fairly set regimen. Let’s say we have a newly diagnosed child with acute lymphocytic leukemia (ALL, the most common form of childhood leukemia). We pinpoint how high-risk or low-risk that patient is by some of the characteristics of the cells. If we’re participating in a clinical trial, we’ll talk about that with the family.

We also have a weekly Tumor Board conference. We videoconference between both hospitals. There will be the oncologist, who may be giving the chemotherapy and seeing the patient; the radiation therapist may attend because the patient may or may not need radiation therapy; pediatric surgeons may be there because surgery may be part of the treatment or a biopsy may be required to make a diagnosis; the pathologist may be there to show the biopsy material and help pinpoint the diagnosis; the radiologist will be there with the scans and X-rays to define the extent of the tumor and whether they’re getting better or worse. So it truly is a multidisciplinary conference. Usually as few as two or three up to  six or seven cases may be discussed over an hour. We’ll discuss treatment options, what other testing, if any, needs to be done, and what might be the best recommendation. Hopefully, after that Tumor Board meeting, we’re coming out with a plan...

Once in a while, you get very difficult cases where we’re not 100 percent certain what the best approach is. Everybody around the country has their own areas of expertise, so we’ll call, email experts who are running a national study in the particular disorder and say, ‘There’s something unusual about this case? Does what we’re thinking sound unreasonable to you? Do you have any other recommendations?’ They do the same with us.

If a patient goes on a trial, there’s a lengthy consent form (that serves as kind of a written treatment plan).

There’s a whole host of new categories of drugs that are pushing us, hopefully, to a new level of cancer care. That’s why we might recommend a clinical trial. If families are comfortable with that, they can let us know that.

What would be a standard treatment for ALL?

There’s usually a period of least a few months up front of fairly aggressive chemotherapy that brings patients back to the hospital fairly often. Then there’s a prolonged period of a year and a half, up to two and a half years, that’s called ‘maintenance treatment.’ It’s mostly oral medicine they’re on at home, with an occasional trip to the clinic. So that’s a long period of time, two to three years.

Solid tumors, lymphomas, sometimes 12 weeks of intensive therapy is all they need.

Cancers is a category of diseases that are so variable ... they’re treated differently...

There’s still a lot we don’t understand about how cancers respond. You can have 10 patients with a very similar stage of the same cancer, getting the same treatment, and seven of them will do great and three of them will recur. And we don’t fully understand what was different about those three. There’s a lot of research going on in this arena.

What is the hardest part of your job?

When things don’t go as well as you hope they will go. You get very close to your families, and these are people you see over and over and over again. You get to know the patient. You get to know the family well. When someone has been doing well, and you have high hopes they will continue to do well, and suffers a setback or the outlook has now changed, there’s no way to make that easy.

Even when you reach a stage when there’s no medical intervention that’s going to make a change in the outcome, that doesn’t mean you can’t help that patient and your family. They still need a lot of assistance going through whatever they’re going through, whether it’s control of physical symptoms or emotional support. Hopefully, there’s a lot you can do for a family and a patient when the medical outlook is not so good, which fortunately is a much less often than when I started.

How do you get through this?

One thing I can tell you is that dealing with kids, they get you through it. Kids are amazing in terms of their resilience. ... Looking at myself, I know that if I’m sick, I just want to lie in bed. Don’t bother me. I feel horrible and I’m really depressed. For many kids, it’s, ‘I want to ride the Big Wheel, so let’s get this thing over with. I want to get on with my life.’

There’s a lot of mutual support within the team. There’s a lot of critical support if you’re going to be successful, as well.

Sometimes, you’re just upset for a while about how things are going. I won’t tell you there are no days that are not hard, but it is a very rewarding field. The tremendous improvement in outlook for many of these cancers has made it a much less depressing arena to work in than it was 30, 40 years ago because our outcomes are much better.

But of course, every individual is still an individual, and for every one person it’s still 100 percent or zero in terms of how things turned out.

What are the most important pieces of advice you give to parents as you begin this journey?

Some of the stuff about writing things down.

I always tell them, ‘You’re the key players here, this is your child. We will keep nothing from you. Make sure you understand what you’re talking about, you’re comfortable with what we’re talking about, and please keep pushing us if you don’t understand.’ I also talk to them about being honest with their child ... at age appropriate levels.

If at all possible, I tell them to keep the child’s life as normal as possible. There’s a tendency when a child gets diagnosed with a severe illness to either become protective – don’t let them do anything because they might break, they might get infected, let’s keep them in a hypothetical bubble. That’s usually of no benefit. It just makes their lives different from all their peers, which is the last thing a child wants their life to be, and doesn’t accomplish anything medically. Or they go the other way, and become totally permissive – ‘Do whatever you want, you poor, sick child’ – which also isn’t good for family dynamics in the long term.

At the end of this, you want a child who’s not only physically healthy but emotionally healthy.

That’s easier said than done.


Twitter: @BNrefresh

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About The Refresh Buffalo Blog

Scott Scanlon

Scott Scanlon

Scott Scanlon is an award-winning reporter and editor who has covered various topics in his quarter-century as a journalist in South Florida, Syracuse and Buffalo. He is aiming to pass along what he is learning these days about health, fitness, nutrition and family life.

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