Health Topics

Long-Term Survival

Andrew Schorr:

All right. In that situation, now, where are we with the hope of curing it and long term survival?

Dr. Conrad:

The cure rate is higher for children under the age of 20 than it is for adults. The average survival for a child with a high grade sarcoma whether it's in bone or soft tissue is about a 75 percent survival rate over the first five years, and very few of them fail after that, but there are some failures after five years.

In the adult world it's much closer to a 50/50 game with high grade tumors. About 50 percent of the patients will survive five years, and 50 percent will not. It's very dependent on the tumor subtype, the age of the patient and the size of the tumor.

Andrew Schorr:

That's right. It's certainly not a one size fits all prediction at all. And I would say even when the statistics may be not in someone's favor or in someone's favor you need to have that personalized discussion with your clinical team. Dr. Conrad, so therefore what follow up might somebody have. And in the case of a teenager, for instance, who had that one surgery, might they need others?

Dr. Conrad:

If they have a bone tumor and they get a fancy mechanical knee, they have a pretty significant risk of having multiple procedures. It's somewhere between 25 and 50 percent, depending on the age of the child. So they have multiple procedures for sure when they have bone cancer as a young child. But most of them have good function, and most of them have an effective knee that they can use. They can't play high school football, they can't do vigorous sports, but they do have a very functional knee that gives them good daily function, and they can do sedentary things in sports, like swimming and golf and cycling, and their function is pretty good. It's better function than an amputee would have.

Andrew Schorr:

In either case, whether it's a child or an adult though, they will be followed closely over many years.

Dr. Conrad:

Yes. All of them are followed five years. When they have a high grade tumor they're followed every three months for two or three years and then every year for an additional couple of years. And then they go into long term follow up programs where there are people that will assist them with the overall general health after treatment, which are critical programs at least to be connected to every couple of years.

Andrew Schorr:

Right. That's my vote for the survivorship program. Certainly there's one at the Seattle Cancer Care Alliance now and how critical it is for a cancer survivor so have that sort of specialized assessment. And that brings me to a question. Either because of the drugs or the sarcoma itself, is there a higher likelihood that someone might have another cancer that could follow later on?

Dr. Conrad:

They do have a slightly higher risk. After going through chemotherapy and radiation therapy, they have a one percent sometimes a two percent risk of having a secondary leukemia, and they're followed carefully for that. And that's more common in some of the harsher sarcoma subtypes. We know how do identify those risks by the subtype of the sarcoma, so it doesn't apply to all the patients but it does apply to some of the patients.

Andrew Schorr:

All right. We've gotten a few questions in. One relates to diagnosis. We talked about this a little bit earlier. Sandra wrote in from San Francisco and she says, "My daughter is waiting on biopsy reports. They have been sent to several places, and the diagnosis has been, quote, favorable, for melanoma two times, but one melanoma oncologist believes it is a sarcoma in the cartilage. Are there similarities with these two cancers? How do we know which treatment to do?

Dr. Conrad:

There are similarities between melanoma and sarcoma. It makes the diagnostic separation occasionally extremely difficult. It's a little bit unusual in a child. It's more of an adult scenario, and you don't usually confuse a cartilage tumor with a melanoma, but there are exceptions to that too. If you had that scenario my advice would be to go to some of the bigger centers with established pathology services. And, you know, if it really was a challenge I would have the slides sent out to two or three different places to see what the jury verdict was returning on the best assessment by those two or three different people.

Andrew Schorr:

Dr. Conrad, you mentioned that at Seattle Children's, for example, you try to see people within a week when they're referred to you, and that sounds like there's a speed involved. Yet here we have people from maybe anywhere in the country or even outside the country trying to get an accurate diagnosis before they pull the trigger on any treatment plan. So help us understand the speed at which treatment would be required, the right treatment to really knock back, hopefully cure one of these sarcomas.

Dr. Conrad:

Whether it's a child or adult my advice is not to have a delay more than six to eight weeks in terms of initiating treatment. And the extreme limit would be two or three months. But as a general rule we like to not have delays in therapy at about six weeks. Six weeks is a long time when you're initiating a plan. Usually you can, you know, you can only generate so many slides from any one piece of tissue, so the slides have to sort of be shared around. So if you're getting two different opinions it's hard to orchestrate that, but you need to get those opinions and make a decision and proceed with therapy, and I think the six week rule is a pretty good basic rule.

Andrew Schorr:

Dr. Conrad, over many years you've met a lot of parents and you've met a lot of kids and you've dealt with adults as well and families. I've read that you have a high level of respect for them, and I can just imagine a parent, now, trying to navigate what's right for their child, and then, as you mentioned, some treatments can be pretty aggressive. These people have a lot of courage, don't they?

Dr. Conrad:

It's incredible. The courage of the average man and woman is, they're not average people, and I'm astounded. It's a source of strength in a sometimes frustrating, humbling profession to see the courage of people when they're staring at the sarcoma tiger and all the challenges, even when they're failing their therapies. But people are predictable, and they want to have what's best for their family, what best for themselves, and are especially passionate about what's best for their children. You don't stay in this business very long if you can't tolerate high expectations, and it has a lot to do with communications and how you respond to new patients and to failures. We try to be very, very responsive to our patients and their families.

Andrew Schorr:

Now, when a diagnosis comes to sarcoma typically the family has never heard of it, really, or isn't clear about it, and then there are all these subtypes. We got an e mail in just a couple minutes ago from a gentleman named Remy, and he said he was just recently diagnosed with synovial sarcoma on his left knee, and it's been seen that there are metastases to his lungs. So he's trying to get a handle on this. How does he find out what treatments are available for that?

Dr. Conrad:

He can call around his regional center. He can go to the national guidelines. Most people are doing lots of computer searches. The NCCN guidelines are a great basic information source for patients who want to know what the basic steps are for treatment. In terms of the details of what you should have as a metastatic synovial patient, then I think you need to sort of talk to one or two experts on what they think. The best treatment for metastatic disease is some kind of chemotherapy and evaluation of the responses, but there's a lot of good basic information on the internet. I think the NCC guidelines are the guest beginning source for treatment protocols for sarcomas. It has all the different cancer types in that system, and sarcomas is pretty well developed, and the experts have worked on that together from around the country.