S3 Episode 3: Young-Onset Adult Cancer Survivorship

Medscape

2 days ago

This transcript has been edited for clarity. For more episodes, download the Medscape app or subscribe to the podcast on Apple Podcasts, Spotify, or your preferred podcast provider.
Kathryn J. Ruddy, MD, MPH: Hello, I'm Dr Kathryn Ruddy. Welcome to season three of the Medscape InDiscussion Cancer Survivorship podcast series. Today, we'll discuss young-onset cancer survivorship.
First, let me introduce my esteemed guest, Dr Narjust Florez. Dr Florez is the associate director of the Cancer Care Equity Program, co-director of the Young Lung Cancer Program, and a thoracic medical oncologist at Dana-Farber Brigham Cancer Center. Dr Florez's clinical interests include targeted therapy for lung cancer and the care of women and young individuals with lung cancer, including their cancer survivorship. Dr Florez, welcome to the Medscape InDiscussion Cancer Survivorship Podcast.
Narjust Florez, MD: Thank you, I'm very happy to be here. Dr Ruddy was one of my mentors when I was at Mayo Clinic, and there were around 6 months during my training that I was considering specializing in breast cancer. So, this feels full circle, coming back and having this discussion with one of the individuals I learned how to conduct survivorship research with. Thank you.
Ruddy: Thank you, Dr Florez. Some of you may remember that Dr Florez was part of this podcast series in previous years, so we're thrilled to have her back again in season three. Dr Florez, could we start by having you talk about the incidence of young-onset cancer and how young-onset cancers can present?
Florez: Thank you for that very important question. Since 2010, and even before that, we have seen an increased number of cases of young-onset cancer. What is young-onset cancer? These are patients who are usually diagnosed before the age of 50 or 45.
These patients are diagnosed with cancer during a very disruptive time of their lives and often don't have any other person in their circle who has been diagnosed with cancer. The number of cases is increasing. Colorectal cancer is one where we have seen the highest rise in the number of cases, and that's why a large campaign is pursuing colorectal cancer screening to start at age 45 instead of 50. So 45 is the new 50. Dr Kimmie Ng spearheaded a lot of these efforts.
When I was at Mayo with you, Dr Ruddy, we saw increased incidences of lung cancer in younger women. Young-onset lung cancer is higher in younger women compared to colorectal cancer, which can be seen in either sex. Young breast cancer is rising in certain groups and declining in others. This is the reality. Younger patients are getting cancer. Cancer should no longer be seen as a disease of older adults.
We have to open our eyes to this diagnosis, because often, these patients don't get a timely diagnosis because of the lack of association with these solid tumor cancers in younger individuals. We often see testicular cancer and lymphoma in this subgroup. Now, a new group of cancers is affecting this population.
Ruddy: In addition to those potential diagnostic delays, what are the unique challenges that your patients face during and after treatment when they are diagnosed at a young age?
Florez: When we talk about young-onset cancers, we must consider their challenges across the entire spectrum. Let's start with the first one, which is diagnostic delays. This is very unique to this population and to patients with colorectal and lung cancer, in which the symptoms cannot be as specific. We know from our own study that young women with lung cancer are often told that they may have a mental health issue instead of lung cancer. The number one misdiagnosis in this group was anxiety. This data will soon be presented. We interviewed over 114 young women with lung cancer and identified that chest pressure was often attributed to anxiety when in fact it was the tumor growing. For diagnosis in young individuals with colorectal cancer, mental health is often included, and these patients with [gastrointestinal] symptoms are diagnosed with irritable bowel syndrome based on symptoms without specific imaging: leading to delays in diagnosis. And a lot of these patients are, unfortunately, diagnosed via stage IV when there are limited treatment options.
That brings up a very important aspect that affects the entire spectrum of survivorship, which is stress and the healthcare system. Many young patients have had to seek care multiple times due to the diagnosis. Many of them believe that they could have been diagnosed at an earlier stage. Issues of trust affect survivorship because, up until the diagnosis, the patient was not heard.
After diagnosis, we know isolation is a big challenge in their survivorship. They don't have peers who have gone through this. They often have a parent or a grandparent who may have had cancer treatment. There is a lack of having that community. Luckily, social media has helped with some of that isolation, but my patients often report that they're the only young person in the entire waiting room. They don't have anybody to lock eyes with. They don't even have anyone in the hallway to say, 'Man, this is difficult.' So we have created a lounge at Dana-Farber, specifically for young adults with cancer, so they can have this little space in which they can connect, even if it's not the same type of cancer, they have the same challenges with diagnosis.
One thing that we often forget to talk about with young-onset cancer is the effect on families. Young-onset patients are often the backbone of caring for others and the family nucleus. So, younger women, younger men, and non-binary individuals are often taking care of younger children, ages 4-18 or more. They also care for older adults, such as their parents or grandparents. In society, this group of patients is the caregivers. The issue is, who cares for the caregiver when the caregiver gets sick?
Finally, these patients tend to have more aggressive treatments because they're able to tolerate them. The consequences of that are a large number of long-term side effects that affect all aspects of their survivorship.
Ruddy: Can you discuss fertility concerns and fertility preservation? This is a topic near and dear to my heart because of my own interest in fertility preservation during cancer therapy, which was inspired by a close friend's cancer diagnosis during medical school. It was actually what led me to become an oncologist and sparked my passion for cancer survivorship research. I would love to hear you tell our audience a bit about how this plays a role.
Florez: We both have a mentor who also studies fertility. We're all passionate about this. Through my own personal experience with fertility, I have firsthand experience with this challenge. One main issue is that oncologists get very limited training about fertility and fertility preservation. You may get a lecture or two, and if you are fortunate, like me, my mentors specialize in this, so you receive extra training; but you have to go out of your way to learn about it. Most patients are not provided the opportunity for fertility preservation, regardless of the subtype of cancer. Breast cancer has been at the forefront, and they have done more research and have more options. Lung cancer is on the back burner. It's behind like it is 1995. The lack of training is a big issue. There is also a rush to treat many of these young patients who are often very sick. We often discuss delays in diagnosis, so these patients need to begin treatment immediately.
But it is not our role as providers to decide fertility preservation for our patients. It is our duty to give them options. There are many options for fertility preservation. It can be easier for biological men. For them, we have sperm collection. For women, it tends to be a little more complicated.
It can range from injections all the way to full stimulation and preservation. However, the main thing is that we keep the options open for patients to make their own decisions, rather than making the decision for them, because we don't know what their cancer journey will bring. With new advancements in therapies, I have patients with metastatic lung cancer living for 12 years. It is not my role to decide if and when they want to be parents or if they want to have additional children. It's not only about those who haven't had children, but also about those who may want more children. Having the discussion is the first step, and it is not expected of medical oncologists or community oncologists to know what to do, but to know who to refer the patient to. We have nurses, nurse practitioners, and specialists. Dr Elizabeth Ginsburg is a remarkable individual who has conducted extensive research in this area.
The main thing is to ask our patients about fertility preservation. I have a template in Epic because we're often so busy that we forget about so many things. However, if you have it in your template, before closing the note, you need to click 'Discuss' or 'You will discuss' so that you can close the note. That's a little tip that has helped me remember.
Ruddy: That's a great tip. The Epic templates are so helpful for so many aspects of our care, so thank you for that. Can you talk about your pregnancy and lung cancer registry?
Florez: When I talked about pregnancy and lung cancer registry on the podcast the last time, we were not even live. It was an idea and a journey. It all started with a phone call from one of my friends, an OB attending physician, who said, 'NJ, I need your help.' I said, 'Do you need help moving?' Do you want me to pet sit your cat? What is happening?' They said, I have a pregnant patient with lung cancer. I still remember the feeling. My belly just fell. They said, 'Well, you take care of young patients.' I was like, yeah, but not pregnant patients.
This led to an examination of the literature, revealing that there are no established guidelines. Most of the data precedes targeted therapy. There is no data available on immunotherapy, and all of these agents are what we are using most frequently in these young patients. As a result of that experience and having to give chemotherapy to a pregnant woman, for the first time in my career, I remember texting my mentor, saying I can't sleep. My patient starts chemotherapy tomorrow. My mentor said, 'Yeah, I've done it a hundred times.'
We created the registry. The registry is housed at Dana-Farber, but is an international registry, so anybody across the globe can enter cases. The cases are anonymous, and we ask for a follow-up 6 months and 12 months after the case has been entered.
To meet the goal of processing as many cases as possible, patients can enter their cases. This process is fully IRB-approved. And it's because sometimes I don't remember the Apgar score of the offspring that may have been treated, but the mothers have the capacity to get such detailed information. Providers from around the world can submit cases to the registry, including nurses, nurse practitioners, and physicians. Families and patients can also enter the cases. We have 72 cases so far. So we have the largest cohort of pregnancy and lung cancer. We learned that there's a significant lack of uniformity in treatments. We have cases from many countries around the globe, and we have seen a lack of uniformity. And it's risky, because a lot of these targeted therapies have not been approved, and they have not been studied for this population whatsoever. Immunotherapy, for example, was studied in non-sexually mature baboons. That's the data we have. As a consequence of the registry, we have launched the Pregnancy and Lung Cancer Consortium with Dr Imbimbo in Switzerland and Dr Marina Garassino, in which people can bring pregnant cases to us. We're happy to guide them because the literature is so diverse.
Ruddy: That's a phenomenal resource and design. I'm very excited to hear more about your future results. Another topic you talked about last year on the podcast was the importance of sexual health. Have there been any new data or interventions over the last year that you'd like to update the listeners on?
Florez: As we're talking about young-onset cancer, sexual health has to be at the forefront. It's unfair to expect a 32-year-old woman diagnosed with colorectal or lung cancer or breast or lymphoma to remain celibate until the end of her days. Sexual health has many benefits, including health, self-esteem, and well-being. It can decrease even the amount of opiates that you may need. Sexual health is cancer care. That's the first thing I want to talk about. As a result of her studies and the Sexual Health Assessment in Women with Lung Cancer study (SHAWL study), which is our study, Dr Sharon Bober has launched the SHARE study, which is sexual health after cancer treatment, focused on younger patients.
This is for women aged 19-49 and is based at Dana-Farber Cancer Institute. No medications are involved in the intervention. The interventions focus on cognitive behavioral therapy, physical therapy, and provide educational online sessions about body changes that these patients may experience during their cancer treatment and after the cancer treatment and how to cope with that and see your new body, your new sexual health, activity, and intimacy. This study is very interesting. Patients will be randomized to either group sessions or individual sessions. It's called the SHARE study, which is sexual health and rehabilitation. While we have documented the sexual dysfunction, this study is the next step, which is an intervention to improve sexual health in young patients with cancer, and the SHARE study is regardless of the type of cancer. If people are interested, they can Google SHARE study, with Dr Bober, who's here at Dana-Farber. I think the time for sexual health interventions is now.
Ruddy: That sounds like an extremely important study, so congratulations on taking that forward with Dr Bober. Do you want to say anything about the potential for integrative approaches to be helpful for young patients, specifically, with regard to other areas of survivorship?
Florez: Yes. I think early onset cancer care is multidisciplinary care, because we have to look at these patients very long term, right? One, two, three decades after they have been diagnosed with cancer. The plan is not to fix issues after we have caused them. The plan is to address them before that.
So, a very important aspect is cardio-oncology and survivorship. I currently have two football players who underwent treatment. Now they're resuming their strenuous activity. I have to work with cardio-oncology to ensure their heart is in shape to run on a football field.
Another important aspect of multidisciplinary care is psycho-oncology for these patients. These patients struggle with significant mental health issues. As a millennial myself, we were born with a little touch of anxiety to start with. My patients say I'm only 42 years old, and I'm tired of being part of historical events. So, I had the pleasure of working with Dr Cristina Pozo-Kaderman, a psycho-oncologist. She helps these patients cope with the diagnosis and new ways of treating some of these mental health issues outside of medications. Medications are very helpful, but therapy plays a very important role in their survivorship.
In breast cancer, colorectal, and lung cancer, mental health issues have a higher prevalence in younger patients. There's a higher prevalence of depression, adjustment disorder, and anxiety. Working with psycho-oncology is key for the survivorship of these patients because it goes by in phases. At the beginning, everybody's all hands on deck, right? And eventually, the layers of support peel off as the patient moves in their cancer journey. Another multidisciplinary care that we often forget for young-onset patients is financial advisors and social work.
These patients don't have lifetime savings. These patients often need to remain in their jobs to keep their insurance, which affects their survivorship, including whether they can make it to appointments, and worrying about switching to COBRA insurance when they can't work. So financial advisors and social workers are essential for treating young patients because it allows them to apply to foundations, adjust things as needed, and know about resources that, often, even doctors don't know about.
I'm in Massachusetts. I'm very fortunate to be in a state with Medicaid expansion. There are a lot of things I'm not familiar with, so these are only three of the things that are very important when we're looking at survivorship for young-onset cancer patients. The fourth thing is family members and caregivers. They are part of the cancer care team as much as the surgeons, as much as radiation oncologists, because sometimes grandma needs to help with childcare. Sometimes grandma needs to help drive somebody. So they need to be included in conversations as well. Young-onset cancer care is no longer just the medical oncologist's job; it is everybody's responsibility, including society as a whole.
Ruddy: I completely agree, and I hope we can come up with new and better ways to support caregivers in future years, because this is, as you say, a very critical part of our care team. Is there anything else you want to tell our audience today before we close, Dr Florez?
Florez: I would like to ask our audience to look at patients with their eyes open. And remember that what we learned in medical school has changed; the patient we learned about in our USMLE step 1, 2, and 3 is no longer the full reality. Lung cancer is not limited to older men with a previous tobacco history anymore. Colorectal cancer is not limited to older men. Come with open eyes. See the patient's needs because, unfortunately, this phenomenon will continue to grow, and more and more younger patients will be diagnosed with cancer. Remove some of the gender bias, remove some oncologist bias, and see these patients with higher needs instead of assuming they can do it on their own. They actually need additional support.
Ruddy: Thank you so much, Dr Florez. Today, we spoke with Dr Narjust Florez about cancer survivorship issues in young adults. Thank you for tuning in. Please take a moment to download the Medscape app to listen and subscribe to this podcast series on cancer survivorship. This is Dr Kathryn Ruddy for the Medscape InDiscussion Cancer Survivorship podcast.
Listen to additional seasons of this podcast.
Cultural Competency and Cancer Survivorship: Humility, Lifelong Learning, and Effectively Communicating With Patients
Trends in Cancer Incidence and Mortality Rates in Early-Onset and Older-Onset Age Groups in the United States, 2010-2019
US Preventive Services Task Force Recommendations for Colorectal Cancer Screening: Forty-Five Is the New Fifty
Lung Cancer in Women: The Past, Present, and Future
Cancer Statistics, 2025
"Too Young to Have This Kind of Diagnosis": A Qualitative Exploration of Younger Adults' Experiences of Colorectal Cancer Diagnosis
Dana Farber Young Adult Program (YAP)
From Approximation to Precision: Fertility and Pregnancy Questions in Young Patients With Lung Cancer
Oncofertility in Children and Adolescents
When the Unimaginable Happens: Lung Cancer Diagnosis During Pregnancy
Sexual Health Assessment in Women With Lung Cancer Study: Sexual Health Assessment in Women With Lung Cancer
Sexual Health and Rehabilitation Online (SHAREonline)