Hear an audio interview with UCSF pediatric cancer specialist Dr. Robert Goldsby discussing how pediatric cancer survivors can go on to lead full, healthy lives.
For many cancers that strike children, there has been real progress in the last few years, and children are living, in many cases, and going on to become young adults and often parents and successful adults in life, but there are survivorship issues. We'll hear all about that and the progress being made next on Patient Power.
Hello and welcome to Patient Power sponsored by UCSF Medical Center. I'm Andrew Schorr.
Well, cancer is not common among children, but it does happen, and it can be so super serious, as you can imagine. There are several different types of cancer, and in some of them, many of them, we've made real progress. Some, of course, remain quite difficult. But as children beat cancer or it's knocked back, then there are issues to be attentive to, and that comes under the whole topic of survivorship. We're going to talk about that with a leader from UCSF Medical Center, and that's Dr. Robert Goldsby. He's a pediatric cancer specialist at UCSF's Benioff Children's Hospital, and he's director of The Survivors of Childhood Cancer Program. Dr. Goldsby, welcome to Patient Power.
Dr. Goldsby, I'm right, aren't I, that in a number of cancers that affect children, as tough as it can be, you have medicines now that can beat it often or beat it back, right?
Absolutely. I think one of the triumphs of modern medicine is the successes we've had in pediatric oncology. When I was born, a little more than 50 years ago, if a kid was diagnosed with cancer, it was pretty much uniformly a fatal diagnosis, and over the last 50 plus years we've gotten better and better at taking care of kids with cancer. And now, with a multidisciplinary team approach, with chemotherapy, surgery and radiation, we are now curing probably close to 80 percent of kids diagnosed with cancer.
We've gotten better and better at taking care of kids with cancer. The problem is the therapies we utilize are very intensive and can have some significant consequences.
Right. And I was thinking about a young man I know from Seattle, and he was treated for leukemia at age five and six, as I recall. And then now, at about 19 years, his kidneys were failing, and eventually he needed a kidney transplant. Interestingly, his kidney that was donated for him was from his dad, and now he's in college and he's doing well. But that was, I imagine, what you would call a late effect, perhaps, of the treatment.
One category of issues would be the late effect of the powerful therapies, and then I understand that whether it's from the therapies or maybe the immune system, a child who is growing older may also be at risk for a second cancer as well. Is that right?
That can be true. Again, we're learning more and more. This field of medicine related to survivors of childhood cancer is relatively new, so we're just sort of in our understanding phase. We've learned a lot about how to treat cancer. We've also learned a lot about some of the consequences of our cancer therapy, and more recently we've been trying to tailor therapy and improve therapies to limit those late complications.
This kid you describe, it's hard to know how much of it was related to his therapy, but it is very therapy dependent. Did he have radiation that may have affected the kidney? Did he have chemotherapy that may have affected the kidney? Knowing their therapy and knowing what the long term consequences of the therapy, is very important not only for the survivor but also for the clinicians caring for the survivors.
Right. I understand. Let's talk about this Survivors of Childhood Cancer Program you have. Now, happily, we have children who are living beyond cancer, but there are these issues we've talked about. What goes on at the program? What do you do there?
We're trying to be a resource for survivors, and again, we try to not only help them with any clinical care issues they may need, but also to learn from their experience and to learn through investigation and research about what may be issues that survivors may face as they go forward.
It's also a program where we're trying to educate not only the survivor and their families, but also communities and primary care providers about issues that are important to survivors. And that can be related to insurance coverage and how important that is for survivors to specific medical conditions that the survivor needs to be aware of. What are their risks for second cancers? What are their risks for heart problems? What are their risks for infertility or other major late effects? What are things they can do to limit those risks? Can they modify their health care practices to reduce risks of second malignancies? Are there things they can do to help improve or prepare for issues related to having children?
There are a number of things that we, hopefully, can help educate families and survivors related to their issues, and we can also contribute to knowledge and try to help understand what issues survivors may face.
Right. Well, as more people are living and living longer, of course, that comes up, and I know being a researcher you try to quantify that in actual clinical studies. Now, one of the things I know you've studied actually is a tool. I think you call it a little passport. It's like a wallet card that someone, a pediatric childhood cancer survivor might have in their wallet that helps them understand their situation, and also helps them as a tool with a physician they might see even a few years down the road, right?
Correct. All survivors should have some type of summary of their therapy… so that it is with that summary that you can sort out what long term issues may need to be followed. The survivor passport that we have utilized at UCSF is actually a credit card sized document, and it's something that they can put in their wallet. They don't have to remember that they were treated with cyclophosphamide, and they don't have to remember the dose of radiation they received, but they have a permanent and portable document that they can carry with them, and I think that that's exceedingly important.
We also give them a full letter that has a lot of additional information. And, many programs give tri folds and other things, but the problem with the letter is it ends up filed in a drawer somewhere, and if you can find it, great, if you can't, that's a problem. We do like the portability of the passport that we use at UCSF.
And on the passport it has a summary of their treatment on one side of the plastic card and then on the other side is a summary of recommended follow up, and this is based on the Children's Oncology Group long term, follow up guidelines that were developed over the past five to 10 years, and we borrow from their guidelines to help ensure that survivors are getting appropriate follow up.
All right. You mentioned, along the way, fertility, and I just want to focus on that for a second. That's something that you are very attentive to there, right? In other words, they beat the cancer but knowing that this child may certainly have a future, we hope they do, and that might be as a parent, you guys are attentive to that now, and that's one of the issues that you discuss, right?
Absolutely. Most survivors are not going to have issues with fertility, but there are chemotherapy agents, and certain treatments such as radiation, that can affect fertility, and we do discuss this and refer to infertility experts as needed. But it is an issue that is brought up in the program. I think that is a major issue for survivors. They want to know, are they going to be able to have children, and if they have children are their children going to be healthy?
The vast majority of survivors are going to be able to have children, and the vast majority of the children of survivors are going to be fine. And the message, and the data that's available shows that the children of survivors have the same chance of having cancer as the general population and the same chance of having congenital malformations as the general population, so that's important information for survivors to be aware of.
Now, again, there are certain situations that are at higher risk for infertility. Survivors need to be aware of those issues.
Doctor, there are children, of course, who may not have been treated at a center such as yours, where you have a dedicated program. What would you say to someone like that, who may have been treated for cancer earlier, as far as, maybe, considering being connected with a survivorship program, such as yours, where you really pay special attention to the issues that could come up for them even as an adult?
Again, I think it's paramount for survivors to advocate for themselves and advocate for other survivors, and I think one of the ways to do that is to learn and know what your therapies were and what your risks are. And it can help guide your life, to some degree, and I think it can empower survivors to know their risks and get appropriate follow up. Some survivors are done with their cancer, and they don't want to have anything to do with cancer and they feel like, that part of my life is gone and I'm going to live life.
I applaud the enthusiasm for life in survivors, but I also do think it is important for all survivors to have some documented summary of their therapy. And they can either get that from their original treating institution, or if they can't, they can go to a survivor program like the one at UCSF, and we can try to gather up as much information we can and generate this survivor passport for any survivor. And we've seen patients from other institutions and have provided that for survivors. And I do think it's important that survivors have that summary and then also have some sort of review of what their long term, follow up needs are. And, again, this is a somewhat a new field of medicine — there are more and more programs that are offering this type of care, but it does take people who are dedicated to advocate for survivors and dedicated to providing resources for survivors, and I think you do want to go to a place that has a program in place to help you.
Dr. Goldsby I couldn't agree with you more. Certainly now we have a time where, because of therapy that children have received, so many are doing better, but when we look back of course many of them received very aggressive therapy. Now we're working hard to have more targeted, less toxic therapy, but we still have many children who do receive or have received in the past very aggressive therapy, and so that knowledge of what could happen and being followed is so important as part of a survivorship plan.
I want to tell a little story. There's a young woman, who is a young adult now, who we interviewed some time ago, and she was treated as a teenager, I believe, for lymphoma, as I recall, and had a lot of radiation to her chest and the knowledge was that maybe she'd be at higher risk for breast cancer and should be followed more closely as a young woman. And she was. And, sure enough, at the earliest possible time they detected breast cancer. They harvested her eggs because they were going to give her treatment that otherwise could affect her fertility, and this was while she was engaged, by the way. And the breast cancer was treated successfully, and she got married and went on her honeymoon and has the chance to have children later on. Is this sort of knowledge, maybe monitoring, is this the kind of thing that we're really talking about?
Yeah. I think that's a perfect example of how a survivor can not only be empowered to know what their risks are but also change their follow up care needs or be sure to follow up with specific problems quickly. And again in that case, in particular, you have a young lady who was probably vigilant about her follow up care and detected a lump in her breast early and got it taken care of early, and, in all aspects of healthcare, earlier and preventive medicine is better than waiting and delays in care.
I think that's a perfect example of how a survivor program can help survivors be aware of their issues and make sure that they're getting follow up care needs.
Dr. Goldsby, what would be your pitch then to parents of children who are facing cancer now? What hope would you give them and what advice would you give them as far as really recognizing that there's life beyond cancer but maybe even some responsibilities to themselves as part of that?
I think there are several avenues to remind families and patients that are going through therapy. One is, we're as a community and as a society getting better and better at treating cancer. I think we're learning more and more about the molecular mechanisms of cancers, and hopefully we will develop specific targeted therapies with less toxicities, and hopefully there will be fewer issues long term as we go forward in pediatric oncology.
I think for those who are enduring very challenging therapies and difficult times, a couple of main messages. One is, most survivors do exceedingly well. Okay? Most survivors don't have major issues, but it is important to be aware that many survivors do have some long term, chronic medical needs and that some survivors do report having issues that need to be addressed. And the only way to know, as a survivor, what your long term needs are is if you know what your therapy was, and so keeping a record of your treatment is a good idea, and making sure when you’re done with therapy that you get a summary of all of therapy you've received. If you're a parent, getting that summary for your child, because when he is or she is older it will be important that they have that summary of therapy so that they can know what their long term issue may be.
I think it's also another important message that we really haven't discussed much is, the effects on siblings and family members and caretakers. I think this is an area that needs a little bit more attention. We've done some studies looking at risk behaviors in siblings of survivors, and we found that the siblings were at higher risk for having some issues, so we don't want to forget the siblings. We don't want to forget the family members and caretakers as you're going on in life. They also may have some issues related to the trauma of having a cancer affect a family.
Well said. And when I think about the little boy who grew up that I mentioned at the outset, he has a twin brother, fortunately who is doing well, but were there emotional issues or could there be even down the road that that other guy feels or the parents? It's a tough go, for sure, and it definitely affects a family.
Dr. Goldsby, I know your program at UCSF is very dedicated to this, and I want to thank you. And just from Patient Power I want to urge families that may be affected by cancer, with a child, to consult with a program like this because there's a lot of dedication there to help that child have as great a chance for a long and full life.
Dr. Robert Goldsby, director of The Survivors of Childhood Cancer Program at UCSF in San Francisco, thanks so much for being with us.
Thank you very much for having us on your program.
Okay. I'm Andrew Schorr. Remember, knowledge can be the best medicine of all.
Reviewed by health care specialists at UCSF Benioff Children's Hospital.
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