Endocrine Care for Childhood Cancer Survivors
This site is intended for healthcare professionals

COMMENTARY

Beyond Survival: Improving Endocrine Care for Childhood Cancer Survivors

Jessica Sparks Lilley, MD; Priyanka Bakhtiani, MD

Disclosures

March 15, 2022

0

It's a Small World columnist Jessica Sparks Lilley, MD, interviews Priyanka Bakhtiani, MD, director of the new Children's Hospital Los Angeles clinic for survivors of childhood cancer with endocrine issues. Dr Bakhtiani is also secretary for the Pediatric Endocrine Society's Tumor Related Endocrine and Neuroendocrine Disorders special interest group.

This transcript has been edited for clarity.

Jessica Sparks Lilley, MD: I'm so excited to highlight your work. I have a strong interest in late effects, as it was one of my first exposures to pediatric endocrinology. I have a cousin who we call my twin brother as he is only 3 weeks younger than me. He's doing great now that we're almost 40. But in the 1980s, he had leukemia and was treated with intracranial radiation when we were 3.

Jessica Sparks Lilley with her cousin, Jordan (left), a childhood cancer survivor, and her husband, Smith (right), at her 2007 medical school graduation.

He ended up having growth failure when we were 10. I remember talking about the suspected cancer risk of growth hormone treatment at family gatherings. All those decision points. His family chose to pursue treatment with growth hormone, and it did everything it was supposed to do.

Can you tell me a little bit about what drew you over to late effects?

Priyanka Bakhtiani, MD: When I was a resident, I rotated through Memorial Sloan Kettering, where I became interested in oncology and transplantation. I had a patient pass away when I was on call, and I knew I couldn't do it as a career.

Then I fell in love with endocrinology. In my endocrinology fellowship, my clinical mentor ran the endocrinology late effects clinic. My research mentor was actually an oncologist who worked with immunotherapy, so that's what my research was.

My husband is a pediatric oncologist, so I have him on speed dial and can ask, "Hey, what does this chemotherapy agent mean, and what kind of category does that fall in?"

I feel a lot of personal connections. By preemptively screening and providing multidisciplinary care, we're able to help these patients live a relatively, if not a completely, normal life. After what they've gone through, we do what we can to make a difference. It's pretty awesome.

Lilley: How early in the process are you getting involved? When do you think is a good time for the endocrinologist to be added to the care team?

Bakhtiani: That's a question for the ages, right? Currently, the guidelines recommend you should start screening at that 1-year mark, and that's when patients get referred to survivorship clinics. I think the advantage of having a dedicated clinic and being that point person is that I can screen them even as these kids get diagnosed. We're establishing that continuity before they get to that survivorship stage.

If they have a relapse a year later, I had that year. We communicate regularly with our oncology team. It makes a difference to have that collaborative care and have those communication channels open. They don't have to be a year after being in remission. We can start testing and identifying these things sooner as well. It definitely has been very insightful.

Lilley: Where are our biggest opportunities as pediatric endocrinologists to improve our care for these patients? What do you see as our biggest frontier, the next big thing we need to consider?

Bakhtiani: This field is changing as we speak. Our excellent oncology colleagues are working on more focused treatments and prevention issues. We're also seeing some novel therapies with newer endocrine side effects.

The biggest things we can do as endocrinologists are stay on top of it, be involved, and try to identify these trends sooner than later.

It comes to a team effort with oncology because a lot of times, these diagnoses will get missed, because the oncologists are screening and they might not be familiar with all the nuances of endocrinology. We can screen these kids appropriately and manage and prevent any clinical effects from endocrine issues. It makes such a big difference in these patients' lives. Having that teamwork allows us to look at the patient from all sides and make sure that these things do get identified.

Lilley: We have to have a seat at the table. It's important to be in the room where these guidelines are being written, making sure that our trainees are exposed. We need to claim our space and say, "Yes, you [as oncologists] are going to help them survive their illness, and we're going to help them for the rest of their lives, to make sure we're optimizing everything in their health, so they can have their best quality of life and that's everybody's shared goal."

What are the most common complications that you see as an endocrinologist?

Bakhtiani: We see many of the same complications that are consistent with the available data. We see pituitary growth failure, as you mentioned. As you know, most kids who undergo cancer treatment will get alkylating agents [and thus we have fertility concerns]. Short stature is very common. We are seeing more metabolic effects — maybe COVID-19 has something to do with it? We're seeing low bone mineral density, a topic that endocrinologists love to talk about.

Lilley: Let's talk about the impact on quality of life and making sure that those concerns are addressed. Tell me a little about fertility and alkylating agents. What do we have to offer a boy who comes in who has had exposure to alkylating agents? Is that a conversation you want to have before therapy starts? That's a very open-ended question, and the answer is way different for boys and for girls. But we need to make sure we think about 15-20 years down the road, when they begin sexual development that will lead to them being parents (if they want to).

What are the options available to them, and how have these changed over recent years?

Bakhtiani: All patients are counseled about fertility preservation and diagnosis. But it's not really the time when people are thinking about fertility. They're not thinking about 30 years down the line, "Do I want to have kids or not?" They're thinking, "I want to live for the next year." There's a lot of information being offered to them.

Gamete preservation is an option for teenagers who are postpubertal. I don't think the rates of people taking up those options are really high in our institution. When these kids are in remission and I do see them in that survivorship clinic, we're focusing on thriving not just surviving, and that's when these things come up.

If I ask a teenage boy, "Do you want to have kids when you grow up?" and the answer is "No, I don't want to talk about it," I try to have an open communication with them and let them know it's okay to think about this at this age. Ask them open-ended questions identifying their known priorities in life and then guide them accordingly.

I think we could do a lot better than we're doing right now with fertility preservation.

Lilley: There's a lot of fires at once, as we see with anybody with a life-changing diagnosis. They remember so little from the initial meeting. They're in shock. I'll have people say, "You never told me," even though we talked about it. Even though we think we do a good job with this, we have to keep in mind that we're meeting people on the worst day of their lives, when they're having this traumatic diagnosis for their child.

We talked about boys. What are the options for girls? Are they getting better? When I was in training and thinking about these questions, there wasn't a lot on the table for girls. People say, "Freeze her ovaries. We'll freeze her eggs." But the technology is not as great as people think it is.

Has this gotten better? What is there available to young women who are coming to your clinic?

Bakhtiani: I definitely think oocyte preservation is an option. The rates of girls asking for it, or families — especially if it's a teenage girl — is a little higher than what we see in males. But then there's the pressure of, are you going to wait for the next 4-6 weeks and do this vs are you going to start your chemotherapy sooner?

The other barrier is insurance. Insurance does not cover fertility preservation, so it has to be paid out of pocket, limiting it to a certain percentage of our patients. We're in Los Angeles, and more than 75% of our patients are publicly insured. A huge proportion of our patients are Hispanic and often don't speak the same language, so in terms of providing resources to our patients and communication, that is a priority at diagnosis.

We have patients whom, in collaboration with reproductive endocrinology at the University of Southern California, we would put on puberty suppressors as they start chemotherapy. This is debatable, as there's mixed evidence, so we would have that conversation with patients. There is the thought that suppressors temporarily put your ovaries on pause, and this maybe prevents some oocyte destruction, giving us a higher chance of being able to proceed with oocyte preservation.

  • 0

Comments

3090D553-9492-4563-8681-AD288FA52ACE
Comments on Medscape are moderated and should be professional in tone and on topic. You must declare any conflicts of interest related to your comments and responses. Please see our Commenting Guide for further information. We reserve the right to remove posts at our sole discretion.

processing....