Surgical Oncology Options at The Children's Hospital of Philadelphia

Treated for Neuroblastoma at CHOP

Speaker: So Mathewos, can you spell your name?

Mathewos Yakob: M-A-T-H-E-W-O-S.

Speaker: And your last name, can you spell it for me too?

Mathewos Yakob: Y-A-K-O-B.

Speaker: Nice. So why do you like trains so much?

Mathewos Yakob: They look cool and I like the way they sound.

Speaker: Tell me about some of your train sets that you have.

Mathewos Yakob: I have a big one that's Rio Grande--

Peter C. Phillips, MD: One of the things that we understand from and deal with in our patients is that we learn from each and every one of them. The varieties of human condition and what people bring to us in terms of their understanding, their love for their children, their love of life, becomes a constant source of inspiration to all of us.

Mathewos Yakob: We traveled through cold, dark forests.

Peter C. Phillips, MD: The fighting and indomitable spirit of these kids as well as their families continuously inspires us. So I think that one of the things that's most rewarding about working in pediatric oncology is that we have the opportunity to make a huge difference. Not just for this moment, but for the rest of this child's life. And that's a responsibility that we willingly take on.

Yakob Habtesion, father: As soon as we knew what the diagnosis was, me and my wife were thinking, "Okay, we got to take him to the best hospital that we possibly can take him." So that kind of gave me time to think, "Okay, now I have, you know, the right doctor here, but I still needed a little more homework." And the goal was to really start the treatment as early as possible because, you know, they didn't want to waste days for us, but we had to make a decision quickly. So when we start talking, really seriously meeting with his oncologist locally here, we--you know, she made some recommendations. And the thing that really made me feel, or my wife feel really comfortable was, you know, his doctor said, "If Mathewos was my son, this is the hospital I would take him." And that hospital was CHOP, Philadelphia.

 

Surgery for Children with Solid Tumors

Yakob Habtesion: There's no other hospital, in the U.S., at least, that does more neuroblastoma than CHOP. They see the most volume than any, so we decided to also go interview the doctors over there. And as soon as we completed the interview, we knew we wanted to take him to Philadelphia.

N. Scott Adzick, MD: For a child and for a family facing cancer, we have every surgical resource imaginable at the Children's Hospital of Philadelphia. When you think about it, we have an array of pediatric surgical specialists. Seventy-five in number, more than any center in the world that can provide any expertise that a child with cancer needs.

Peter Mattei, MD: The nice thing about a place like CHOP is that we have experts in really just about every area of pediatric subspecialty. And so if patients come with a problem that is unusual or uncommon, we know that we can find the expertise.

John P. Dormans, MD: I can think of eight to 10 different techniques that we've developed here in response to challenging situations or problems. The whole field of limb-sparing surgery has been around for a long time, but within the umbrella of that field there are many different nuances and variations that have been developed here at CHOP over the years.

Phillip B. (Jay) Storm Jr, MD: The right approach to surgery on the brain is a little bit different than other surgeries because the function is not quite as well defined, the whole mind-brain barrier. So a great concern is always to be aggressive without being reckless. You want to remove as much tumor as you can and leaving them neurologically intact.

Peter Mattei, MD: The majority of patients with neuroblastoma eventually require surgery. Surgery is an integral part of the care of most patients with neuroblastoma. Most of the time is spent painstakingly removing the tumor, literally millimeter by millimeter. And sometimes it means separating it very carefully from these very delicate structures. We always have to take our time and be very careful.

Rochelle Bagatell, MD: A surgeon has to have a great deal of technical expertise in order to be able to carry out, for example, a limb salvage procedure. I think what sets the team at CHOP apart is an ability to understand the chemotherapy, the radiation considerations, and all the other aspects that go into the entirety of a patient's care. Patients come from a very long way to take advantage of the expertise and the volume that we have here at CHOP.

Peter C. Phillips, MD: Volume is critical in a surgical program for the simple reason that the more experience somebody has in all the varieties of that clinical presentation, the better off the patient is going to be in terms of that surgeon being able to anticipate, as well as to deal with the unexpected. If you're doing 100 operations for brain tumors a year, the variety and the differences of clinical experience that you're going to have and be able to bring to this individual patient is going to be much richer and much more powerful.

John P. Dormans, MD: The fact that we see so many children with rare, uncommon, difficult tumors, I think, leads to this or helps foster support this environment of innovation. Trying to find new and better ways.

Peter Mattei, MD: For most patients and parents whose child is about to undergo a major operation under general anesthesia, it's often the anesthesia that is the scariest part for those patients. And so we try to address that in a proactive way ahead of time. We reassure them that general anesthesia is very safe for patients, especially young patients. But we also reassure them that it is a very serious business.

John P. Dormans, MD: We're fortunate to have an anesthesia pain program here at CHOP, which I believe is very unique and hugely valuable after this type of surgery. Our anesthesia team is looking for catheters or regional blocks or postoperative pain management techniques that will help make it a less painful experience for the child after surgery.

 

The Surgical Oncology Team Approach

Kurt Kovach, father: I would tell any parent who is considering a course of action for their child's cancer treatment to take a good, hard look at the people and the processes here at Children's Hospital of Philadelphia. There's a great team here.

Rochelle Bagatell, MD: When parents are considering picking up and coming to a new institution for a very important surgical oncology procedure, the reason to pick CHOP is because of the expertise that every member of the team brings to bear. As things go along in the patient's treatment, sometimes things come up, sometimes things have to change. And we're in such close communication as oncology and surgery teams that we're able to have the flexibility that each individual patient needs.

John P. Dormans, MD: The working relationship between the members of our cancer team here at Children's Hospital of Philadelphia is fantastic. We all have a common goal in mind. We all are very dedicated to the concept of creating the best center that we can create to take care of these kids.

Phillip B. (Jay) Storm Jr, MD: Everyone seems to appreciate the urgency and the need of collaboration, how important it is to do expeditiously and effectively. People are just willing to rearrange their schedules at a moment's notice to provide the best care.

Peter C. Phillips, MD: The collaboration between surgeons here compared to any place else that I've ever worked is really the closest and the most comprehensive. It really kind of sets a model for me of how this should be done.

Peter Mattei, MD: In many ways the nurses are the glue that hold together the entire team. We lean on the nurses, not just for the traditional role of caring for the emotional needs of the child, but also to help us to know exactly what is right for this particular child, for this particular family.

Erin Armideo, RN, MSN, CRNP, CPON: The families and patients that come here for their surgical procedures, or who are CHOP patients and have surgery, often look to me to educate them about what they can expect with surgery as well as about their treatment protocol and any side effects. I usually defer to the surgeons to talk about the surgical approach. And often we will have the physical therapist, occupational therapist, and the medical team discuss with the family what to expect afterwards.

Rochelle Bagatell, MD: I think nurses are the front line, really, for surgical oncology patients. And having an experienced nurse at the bedside who knows what to look for, knows how to interpret the patient's issues, and to support the family through a challenging time is really a very important part of the CHOP experience.

N. Scott Adzick, MD: Well, each child is unique and each child with cancer is unique. We believe in family centered care at The Children's Hospital of Philadelphia. So for the child with cancer, all that expertise envelops the child and the family.

Rochelle Bagatell, MD: Nobody knows a child as well as their family members. And so just as we partner together with surgeons, oncologists, nurses and all others who are involved in the patient's care, we include the families as part of the team. And I think that really brings about the best outcomes for the patients.

 

How CHOP Communicates with Referring Physicians

Yakob Habtesion, father: The hospital quality was very important to us. We wanted to do all the check ups, but we wanted to make sure there was proper communication between the different doctors so that there's no hiccup or some error that is created because we decided to take him somewhere else.

N. Scott Adzick, MD: When a child with cancer is referred to The Children's Hospital of Philadelphia, a child who needs an operation, it's very important to communicate well with that referring oncologist to make certain that the records are transferred appropriately, to make sure that there is robust and frictionless two-way communication, and it's important for us to keep that referring oncologist up to date with the child's progress.

Rochelle Bagatell, MD: I think the relationship that we've developed with a number of different referring physicians, both surgeons and oncologists, has been really quite tremendous. We've been able to partner with our colleagues so that care can be delivered close to the patient's home. But right around the time of surgery, we all come back into the picture, help the patient through what can potentially be a challenging situation, and then communicate back what's happened in the perioperative period to the oncology and surgery teams that are going to be taking care of the patient down the road.

John P. Dormans, MD: Often the pediatrician has known this patient and family for years and they see them yearly, if not more frequently, and they care deeply about the patient and family. So it's a huge priority for us to communicate back to that referring physician, pediatrician, family doctor, and keep them in the loop, and involve them when we can with the care of the child.

Peter Mattei, MD: So we make ourselves very available. We provide e-mails, cell phone numbers, any way that they need to get in touch with us pretty much 24/7 so that we can help. Oftentimes the patient will come to us from a long distance, have their surgery, and then return home for their recovery. And so there are issues that can sometimes arise, and we're always available to make sure that we help them with not just complications, but any of the side effects of their surgery.

 

Second Opinions for Cancer

Rochelle Bagatell, MD: I think what most people who are considering second opinions at CHOP want to know is, "Can the best possible surgical resection be achieved with the fewest possible complications?"

Kurt Kovach, father: One of Rachel's biggest concerns coming into this process was that her leg would be amputated. You know, knowing that Dr. Dormans is a preeminent authority on limb salvage gave her confidence that she was going to get through this with both of her legs.

Rochelle Bagatell, MD: Our surgical oncology team here at CHOP has developed expertise in performing limb salvage surgeries even in cases where other orthopedic oncologists have not thought that limb salvage was feasible.

John P. Dormans, MD: We're here for any family that has a child with cancer or cancer-related type of problem. There are times when they come here for a second opinion and we reinforce what's being recommended at home. There's other times where we are able to offer something new or different.

Peter Mattei, MD: And it's important, I think, to be honest with families and to explain that, in relative terms, we either have more experience than other institutions or we have something else to offer to their child. They'll often ask, "Should I get other opinions?" And I'll always encourage parents to get another opinion. You can never have too many opinions when it comes to the care of your child.

 

Childhood Cancer Research

Kurt Kovach, father: We didn't know what Children's Hospital was. We didn't know anything about Ewing's sarcoma. We had no experience with Children's Hospital of Philadelphia. We later came to find out that the oncology team here did the foundational research and developed the protocol for treating Ewing's sarcoma, the protocol that's used around the world now.

Richard B. Womer, MD: Something one occasionally hears from patients and families and sometimes even from referring physicians is that they don't want their children or they don't want their patients to be part of a clinical trial or part of a research study. My response to that is the reason that we are here, the reason we come to work every day is to cure the child and to give them the best possible quality of life afterwards. If while we're doing that we can make things better for the future children with cancer, then that is a very important fringe benefit, but doesn't change our primary goal, which is to do our best for that patient.

John P. Dormans, MD: The cancer field is moving at a very rapid rate of discovery. We're learning things every day that are new and different. Things that are exciting and help us have optimism for the care over the next decades. If we're in this situation where we have the privilege and the opportunity to take care of children with very rare, difficult, uncommon situations, we also have the responsibility to find new and better ways.

Peter C. Phillips, MD: Children's Hospital of Philadelphia in many, many, many different areas is a leader in new research techniques and taking ideas that have come from the laboratory and embodying those ideas in actual clinical therapeutic benefit. In this kind of a situation, again, our responsibility is to build on what has been the best and to make it better. That's really what research is about.

 

Hope for Children with Cancer

Rachel Kovach: I think I might want to come work at CHOP as a pediatric oncologist because going through treatments I have seen how many kids are being diagnosed with cancer, and being a cancer patient myself I think I can reassure them that everything will be okay and that they can make it through their treatments.

Peter Mattei, MD: There are few things more rewarding than helping a child with cancer. It's a very difficult operation. In many cases, it's very challenging from a technical standpoint. It's very difficult from an emotional standpoint. But, again, the rewards of a job well done are greater than probably in any other field that I can imagine.

John P. Dormans, MD: The motto of our hospital is "Hope Lives Here." And it does in the sense that we're constantly working with children that have very difficult, challenging and often rare disorders. And looking back as few as 10 years ago, the advances and discoveries and progress that has been made is remarkable.

Kurt Kovach, father: It's important for parents when just finding out about a cancer diagnosis for your child to understand that there is a very capable team here at CHOP that have treated the cancers that your child has many, many times. If it can be treated, it can be treated here.

Unknown Speaker When I was 15 years old, I was diagnosed with a brain tumor.

John M. Maris, MD --is built on the shoulders of some giants.

Kurt Kovach, father: There is hope, lots of it. And our daughter is a living, breathing example.