Advanced Options for Your High-Risk Oncology Patients

This video series is designed to help referring oncologists and families better understand the different treatment options for patients with difficult or hard to treat cancers. As one of the largest pediatric cancer programs in the country, the Cancer Center at CHOP has dedicated teams of specialists, with focused experience on a certain type of cancer, and often times can offer patients access to certain therapies and protocols that can’t be found elsewhere. The Center works with oncologists and families from all over the world to integrate some of these therapies into their existing treatment programs at home, to create a stronger treatment plan that works for the families.



Erin Chance, Mother of Patrick: In many ways, Patrick is your typical 8-year-old boy.

He loves LEGOs. He loves games. He loves his dogs. He has two sisters that he plays with and enjoys. He loves to go fishing with my husband. That's his biggest thing.

When he was first diagnosed, I think the overwhelming feeling is sort of shock and disbelief. I remember for the first week or so really being in a daze, not really believing that your child actually has cancer because you know as a parent, one of the things that you fear most is that your child would get a terminal disease or a very serious disease like cancer, and so to hear those words actually come out of a doctor's mouth is very shocking. So I think being overwhelmed would be a very good way to describe it.

The doctors told us to take things day by day because it really is an unpredictable lifestyle. So when Patrick's cancer didn't clear, we started doing a lot of research and CHOP was one of the very first places that we learned about that was in the forefront of cancer research, especially neuroblastoma research with their Genomics Department and their cutting-edge research that you cannot get anywhere else.

Thomas W. McLean, MD: When I refer patients, I want them to go to the best.

I want them to go to a highly regarded, well-respected institution where I know they're going to be well taken care of and have good care. And a place like CHOP certainly fits that description.

Change The Course

John M. Maris, MD: The CHOP Cancer Center is special because it seamlessly integrates both our clinical care mission and our research mission.

It's because we work very, very hard to have an integrated approach to that individual child's problem and to have options. When a childhood cancer shows itself to be resistant to the standard treatments, and where sometimes there is no known cure or no known way to combat that, that's the void that we are very much trying to fill and for every different type of childhood cancer, we seek to have a portfolio of options that need to be tailored to that individual child.

Anne Reilly, MD: So if perhaps, the disease is treated and goes into remission and then comes back, that might be a time where the choice of what to do isn't always clear and a second opinion can be very helpful in figuring out what the right course is for a child.

If a child's disease isn't responding to therapy and a new therapy is needed, that's another time that a second opinion may be helpful and here at Children's Hospital we have lots of new therapies that are just being brought out, that have just been discovered, and a second opinion may give you a chance to get a therapy that isn't available in other places.

When There's No Roadmap

Thomas W. McLean, MD: I feel confident that we can treat just about any type of pediatric cancer that comes through our doors. But there are occasionally innovative or new protocols, new drugs that we don't have available here, even from the outset, that we consider referral to other institutions. I personally welcome second opinions.

I think the more opinions we have the better because I'm always learning and I think that there are obviously new and better treatments being developed all the time, and if our patients can benefit from those, I am all for them.

Erin Chance, Mother of Patrick: We were kind of excited about trying a new therapy because the first time we actually talked to the doctor about going to CHOP was in late 2006 because that was when Patrick's marrow hadn't cleared, after induction therapy. So there wasn't really a road plan for us to follow if we weren't going to follow the normal course of treatment for his type of cancer.

Frank M. Balis, MD: Children's Hospital of Philadelphia is one of the largest cancer centers in the country and I think the most important thing as a physician, in terms of knowing how best to manage a patient, comes from experience.

So the more patients that a physician sees, the more one knows about the oddities or the exceptions that can occur in patients in terms of determining what the best therapy is for that patient and managing that. And so we like to think that because of the experience here, we have something to offer to physicians who may be at smaller hospitals in terms of the numbers of patients that they've seen and we're happy to provide that expertise.

Rochelle Bagatell, MD: Many times we'll see a patient for a second opinion and agree completely with the recommendations of the treating physician.

And in that case, I think the patient and family feel more confident pursuing the road that had been recommended and oftentimes we'll have a nice dialogue with the treating physician who may also walk away feeling confident in their treatment plans.

It Takes a Team

John M. Maris, MD: We have developed a series of multidisciplinary review conferences for children at any phase of their treatment and for each of the subspecialty care teams, there are special conferences that are designed to make sure that each child is getting the best possible recommendation. So the way that we've approached forming our care teams is by asking the question, "What would a family want in a care team model as they enter into our center at any stage?"

Stephan A. Grupp, MD: Each of these groups have not just doctors, but nurse practitioners, nurses and other people associated with care that really have a lot of experience in the specific group of diagnoses that they see most often.

I think an incredibly important part of the care teams are nurses at various levels. The nurse practitioners here subspecialize. I think that's really important. They have terrific experience in taking care of patients with specific diagnoses.

Rochelle Bagatell, MD: We have surgeons of just about every imaginable subspecialty as well as medical people like myself and my colleagues that I think bring everything together to make a treatment as unified and cohesive as it can possibly be.

Stephan A. Grupp, MD: The nurses in the clinic, the nurses in the inpatient unit, also, they tend to have focus areas that they're most comfortable with and certainly within our transplantation group, we have a group of nurses that almost exclusively takes care of transplant patients and we think that that's an extraordinarily important part of the care of the patient.

Frank M. Balis, MD: I think secondly, CHOP has all the other subspecialties that are covered and experts in every field. These patients with cancer oftentimes undergo very complex therapy that has a number of toxicities associated with it, and oftentimes that requires experts from other areas – Cardiology, ICU, Nephrology – to manage those complications in the best way.

A Powerful Collaboration

John M. Maris, MD: When a referring physician or a physician in the community is faced with a child whose cancer has proven to be resistant to standard treatments or there are questions about what is the next best step in that child's care, we are creating a program where those physicians will think of CHOP and physicians here to consult with.

Thomas W. McLean, MD: I view myself as the primary physician perhaps coordinating that child's care and helping the family make decisions about the recommendations. When I refer a patient to CHOP, I'm confident that they view themselves as a consultant and not as the service that's going to take over the care of the patient. They very much keep us involved and we appreciate that.

Erin Chance, Mother of Patrick: When I think about how CHOP and our doctors work together at home, what strikes me is a quote actually by our treating physician at home where one day he walked in with a fax and his words were simply, "This is how it's supposed to work."

John M. Maris, MD: It's our goal to do what's right for the child. It is a seamless integration of a new care team with the home referring team.

Ellen Tracy, RN: Helping a family cope when their child has cancer is complicated.

If the adults surrounding the child are on the same page and connected, and that's our top priority, that they're all focused on that child and getting that child through whatever difficult experience is about to come.

Anne Reilly, MD: We do believe that children often do best close to home, being treated by their primary oncologist. When we see one of your children in referral for a second opinion, you should get a phone call that day or the next day explaining exactly what happened while the child was here, what we've done and what recommendations we've made for the family. We'll also then issue a formal report that will come to you and to the family about our formal recommendations. And we want to maintain the lines of communication with referring physicians to make sure that the family and the child get the therapy that's actually best for them.

Rochelle Bagatell, MD: We like to work hand in hand to be able to deliver care where it's going to fit the patient's needs the best. So for example, if we have a complicated patient who would benefit from radiation or surgery here at CHOP, we're very happy to work with them to be able to deliver part, or most, or some component of therapy here, or in the referring center, to minimize the travel for the patient, and keep the referring physician very closely involved in their care.

Together We Advance

Erin Chance, Mother of Patrick: Probably the resources I find most useful at CHOP are the fact that there are cutting-edge, Phase 1 chemotherapies trial here that you cannot get anywhere else. If you want this medicine for your child, it's at CHOP. So the fact that they make it easy to get here, easy to deal with the doctors and nurses, easy to have a relationship with between your home hospital and the hospital here, is great because if you want the hope of the newest, best medicines, then this is the place to be.

Thomas W. McLean, MD: I would say the best thing about working with CHOP and the physicians at CHOP is knowing that they have the ideal blend of cutting-edge research but excellent clinical care.

Rochelle Bagatell, MD: Many of our physicians are heavily involved in the development of the clinical trials that are available nationwide. And so those physicians and the colleagues who work with them benefit from their own experience, but also the experience of other centers who have patients enrolled on the study. So if a physician has been involved in the development and conduct of a study, they will have thought about and grappled with a wide array of complications that can arise, extenuating circumstances that may have come up, and they'll have an appreciation for how things can be handled both when things are going smoothly and when it's more difficult.

Frank M. Balis, MD: Over many years we've studied and learned about the pathogenesis, the causes of different types of cancer in children and adults, and now that research is just bearing fruits in terms of identifying drugs that are much more selective and specific for the cancers and hopefully much less toxic to the patients. And there are a number of other relatively rare diseases that we didn't have many studies for or good treatments for that have benefited directly from an understanding in the laboratory and translating that directly into the clinic.

John M. Maris, MD: If a discovery is made and there's a new treatment, we have the resources to get that implemented quickly. We strive very, very hard to have many of these new discoveries arise here. So in many respects the families that are here will get first shot at something that is new or very interesting for the care of a particular disease.

Anne Reilly, MD: Here at CHOP we're one of the first places that a proton program was conceived and built with children in mind, and built side by side with our oncology program there to support it. So that a child that comes here to get proton therapy has the advantage of the CHOP oncology program there to support the child in their chemotherapy, and all their other medical needs while they're getting their proton therapy.

John M. Maris, MD: Research to us is not enrolling children onto a clinical trial. Research to us is the process of using the most recent advances to impact in a positive manner the lives of children living with cancer today.

A Confident Choice

Thomas W. McLean, MD: It's really a privilege to be able to be involved with these families and to take care of these children, and it's so important that the families feel good about the care.

Erin Chance, Mother of Patrick: At CHOP it's always been easy and smooth and it's never a concern for me that I'm going to get here and things aren't going to be done right. And my experience has been fabulous. They're immediately going to put you at ease. They're going to make you feel comfortable, and they will also help the parents acclimate to a new environment. They will make sure that you know what you're doing, where you're going, and what's expected of you at all times. And I've never, ever had a problem one time with the relationship between our home doctor and the team here at CHOP.

Rochelle Bagatell, MD: CHOP is big, but we work very hard as a team to bring the place down to size, and to sort of hold the patient and family's hand as they walk through all the different areas of the hospital and of our own oncology division. A patient can expect to be sort of wrapped in our arms in some ways because the nurses and physicians and child life people... everybody is there specifically because they want to take care of children with cancer, and they know how hard the experience can be and they're at the ready to help.

Ellen Tracy, RN: I think when families come from another center, they've already had that initial shock. Now they're in a new cancer center trying to integrate, and we want to understand where the family is, what they already know. We want to say, "How's your cancer journey been so far? What can we do to meet your needs? How can we help you where you are now?" We expect people are going to be scared and anxious and impatient. You know, when your child is sick, you're not at your best – and we don't need you to be at your best. We're going to accept your family wherever they are and help you through it.

Anne Reilly, MD: Cancer is a big challenge. And it's such an unexpected and really hard thing for a child to go through, that if you can help a child and a family get through both the medical and sort of the psychological aspects of getting through their cancer, treating cancer and getting over it, you know, you've set them up to have the rest of their life feeling normal. And that's a really neat thing to be able to do.

John M. Maris, MD: We're very encouraged by the pace of discovering the way things are moving very quickly. At the center of it all is the child, and we are very much tuned in to the fact that these children have very different past histories, different amounts of side effects that they've had, different social situations and so there's not a one-size-fits-all approach to this here. So balancing innovative treatment with quality of life is something that is central to every recommendation we make.

Frank M. Balis, MD: I think what's also hopeful to me here at this hospital is knowing that discoveries will be made here that'll impact on children who develop cancer in the future and improve even further the treatments that we have available.

Erin Chance, Mother of Patrick: I would tell other referring physicians about our relationship with CHOP in the sense that they're not going to lose their patient. We are still fully committed to our home institution and we more look at the relationship between Children's Healthcare of Atlanta and The Children's Hospital of Philadelphia as a collaboration. And I truly believe that they view it that way as well, that they're partners working towards a goal. And you can't really ask for more than that.

Related Centers and Programs: Cancer Center, Relapsed Leukemia and Lymphoma Program, Refractory Neuroblastoma Program