Not that long ago, a diagnosis of incurable cancer was a death sentence. Treatment advances in the last two decades, though, have changed the outlook for many patients with hematologic cancers, extending life expectancies and turning some malignancies into conditions that can be managed like chronic illnesses.
A recent analysis of long-term survival estimates found that 10- and 20-year relative survival increased for several common hematologic malignancies, with particularly strong progress made in chronic lymphocytic leukemia (CLL), chronic myeloid leukemia, and non-Hodgkin lymphoma.1
Although improved survival is great news for patients and the field of hematology/oncology, it presents unique challenges for patients living with an incurable cancer, from the anxiety of “watchful waiting” periods to the isolation of never joining the community of cancer “survivors.”
“For patients, it can often feel like you’re on a roller coaster, and you’re going up, up, up, waiting for the drop, and you don’t know when the drop is coming. That uncertainty is a lot to have to face day to day,” said Pamela Handelsman, PsyD, a health psychologist at Fox Chase Cancer Center in Philadelphia.
ASH Clinical News spoke with hematologists, psychologists, and psychiatrists who work with patients with cancer, as well as a patient advocate with CLL to find out how to best support patients living with a chronic hematologic cancer.
Diagnosis Is a Vulnerable Point
For some indolent blood cancers, patients are asymptomatic at the time of diagnosis and don’t require immediate treatment. In fact, about one-third of patients diagnosed with CLL may never need treatment to control their cancer.
Although this may seem like good news, it can be a confusing message for patients. “Being told you have cancer and then being told we’re going to watch it is really a hard process for people. It’s being told that your health status is different than you thought it was before and we’re not going to start treatment,” said Lindsey Roeker, MD, a leukemia specialist at Memorial Sloan Kettering Cancer Center in New York City.
This period of watchful waiting without treatment can be one of the most stressful aspects of a chronic cancer. Most public health messaging around cancer emphasizes the importance of early detection and treatment, and while that is true for most solid tumors, it’s not the right advice for chronic blood cancers, said Russell Patmore, MRCP, a consultant hematologist at the Queens Centre for Oncology and Haematology in England, an honorary visiting professor at the University of York, and coauthor of a recent paper on how patients cope with chronic blood cancers.
“There’s a big difference between reality and people’s perceptions. A lot of having a chronic blood cancer is living with that blood cancer, even when it may not be causing you any physical harm, and because it’s a cancer diagnosis, there’s a very high chance of it leading to significant psychological distress,” Dr. Patmore said.
Adding to the distress and confusion, some patients have never even heard of their chronic blood cancer until the time of diagnosis, said Debra Howell, PhD, professor of health services research at the University of York. In a qualitative study involving in-depth interviews with patients with CLL, follicular lymphoma, marginal zone lymphoma, and myeloma, and their family members, researchers found that many of the patients had no knowledge of their cancer type, with one patient saying she knew only that leukemia was a blood cancer. Patients interviewed said they had no prior knowledge about indolent and acute subtypes of cancer or the outcomes associated with the malignancies.2
Dr. Howell, who authored the paper with Dr. Patmore and other members of the U.K. Haematological Malignancy Research Network, said patients’ reactions to the shock of a chronic cancer diagnosis vary widely; some take it in stride, and others feel significant anxiety.
Brian Koffman, MD, has had CLL for 18 years and is the co-founder of the CLL Society, a patient advocacy group. He said many patients facing this “watch and wait” period are looking for any action they can take, often turning to supplements and diet as a way to try to control their health. “I think what the hematologist has to do is engage the patient. That’s why I don’t like ‘watch and wait.’ I like ‘active surveillance’ or ‘active observation,’” he said.
Dr. Roeker noted that the period of observation can be a good time to get patients up to date on vaccines and age-appropriate cancer screenings to protect against the risk of infections and secondary malignancies. “We don’t need people doing extra, but we want them doing what they should be doing anyway — mammograms, pap smears, colonoscopies — when they are due,” she said. “A lot of my care for patients who are asymptomatic is really focusing on those pieces.”
Nicole Lamanna, MD, professor of medicine and director of the CLL program at Columbia University Medical Center in New York City, said aside from highlighting the preventive actions patients can take before treatment, she tries to bring patients in regularly during the observation period to hear their questions and concerns. “There’s no doubt, for any of these chronic disorders, the first year or two after diagnosis is really tough on them mentally,” she said.
After her patients’ first visit, Dr. Lamanna also offers them an informational booklet about their cancer and a cheat sheet about health care maintenance and vaccines. She advises patients to put all the material aside if it’s too much and wait until they’re ready to learn about their cancer to look at it. She also points them toward credible sources of patient information like the Lymphoma Research Foundation and the Leukemia & Lymphoma Society, as well as patient advocacy groups such as the CLL Society and Patient Power.
Assessing Distress
Receiving a chronic cancer diagnosis is a stressful time for all patients, but some will need professional mental health support. Dr. Roeker said she relies on a combination of what the patient says in the visit, what she senses from their demeanor and behavior, and what family members and caregivers tell her to guide referrals for mental health services.
“There are people who when I meet them the first time, it’s clear this is going to be a huge transition, and those are people who right off the bat I connect with social work,” she said. “If I hear something that makes me aware that the person is having significant issues with anxiety or mood changes, that’s when I involve psychiatry.”
Cancer centers are required to screen for psychosocial distress as part of their accreditation from the American College of Surgeons Commission on Cancer. The requirement, which was phased in starting in 2015, calls for patients to be offered a distress screening at least once during the first course of treatment. Programs can determine the type of questionnaire, but preferred tools are standardized and validated or have established clinical cutoffs. Patients with “moderate or severe distress” should be evaluated further by the oncology team to confirm the screening results and identify appropriate referrals.3
Distress can be broken down into practical, emotional, spiritual, social, physical, and behavioral elements, said Shawna L. Ehlers, PhD, associate professor of psychology and director of behavioral health for the departments of oncology and hematology at Mayo Clinic in Rochester, Minnesota.
Practical distress factors include food insecurity, transportation, and housing, which are also known as social determinants of health. The most common elements of emotional distress are depression and anxiety, while physical and behavioral factors include fatigue, pain, or tobacco use.
The team at Mayo Clinic is broad and interdisciplinary and includes financial counselors, patient navigators, social workers, and nurse navigators who function as first responders to a positive distress screen. Beyond that, staff members in psychology and psychiatry can be called in for more complex issues, Dr. Ehlers said.
When patients get referred to the psychology team, it may be the result of distress screening or clinical judgment, Dr. Ehlers said. “Across the country, we all know that we’re mandated to screen for distress, but most cancer centers struggle a bit to respond to that mass of assessments,” she said.
A Menu of Support Options
For patients dealing with chronic cancer, there are lots of potential stressors. Along with the shock of diagnosis, they may experience fear and anxiety around progression and may also struggle to explain to loved ones that their cancer is a lifelong journey requiring different types of support, explained Emmie Chen, MD, director of the psychiatry section at Fox Chase Cancer Center in Philadelphia.
Psychologists and psychiatrists often help patients with cancer learn to communicate their needs, whether that is to an oncologist or a family member, Dr. Chen said. “That can be really difficult for people who are not used to being in that role of asking for help or being vulnerable.”
Patients need different types of support, said Dr. Handelsman, who works with Dr. Chen at Fox Chase. They may need someone to check in on them and know all the details of their cancer care, or they may just need someone who can distract them with something lighthearted, like sports news.
Dr. Handelsman said the mental health support services are not one-size-fits-all. For instance, if a patient is feeling isolated and not well understood, a support group may be the way to go. She recommends groups that are moderated by mental health professionals or trained peer support. There is also a form of cognitive behavioral therapy (CBT) known as acceptance and commitment therapy that can be helpful for patients with chronic cancers. It focuses on mindfulness and teaches patients how to live a meaningful life with their anxiety and depression, she said.
“Rather than challenging your thoughts, it’s more about accepting that you have these feelings and doing what is important to you anyway,” Dr. Handelsman said.
Dr. Ehlers also sees a role for CBT among patients with chronic cancer because of its ability to target fears of progression. “I think it’s the intrusive thoughts that are difficult for most people,” she said. “Feeling like, ‘I can’t stop thinking about cancer.’”
Psychiatrists play an important part when a patient’s symptoms may warrant medication, Dr. Chen said. Seeing a psychiatrist who has experience in cancer can be helpful when considering potential drug interactions with treatment. However, she said, for many patients, medication may not be needed.
“Especially for long-term treatment, there’s a lot of evidence to support talk therapies, like CBT for insomnia being much more effective than sleep aids and benzodiazepines, which in the long run can possibly worsen anxiety and sleep quality and cause problems with dependence and tolerance,” Dr. Chen explained.
Mehak Sharma, MD, a psychiatrist at Memorial Sloan Kettering Cancer Center, said psychotherapy is important, but medication can be a useful tool for patients with a high level of distress. “It works faster, and it allows that distress level to come down enough so they can engage in therapy and be in that reflective state where they can talk about those issues,” she said.
Working Together
Cancer centers have multiple models for incorporating mental health services. Some oncologists may refer patients to the psychiatry department within the cancer center, or psychiatry services may be embedded within each oncology team. No matter what the setup is, bidirectional communication works best, Dr. Handelsman said.
She provides patient updates to her oncology colleagues regularly, and if they are within the center, they can also read her patient notes, she said. But hearing from the oncologist about the patient’s treatment and prognosis is also helpful. For instance, she recently had a patient who was doing well and was preparing to terminate the sessions, but the oncologist asked her to hold off until after the patient’s next scan. It turned out there was a progression. “Because of that communication, that patient didn’t get dropped right at the moment that they were receiving some bad news,” Dr. Handelsman said.
When going outside a cancer center for mental health services, the ease of communication is reduced, but patients can consent for providers to share information, Dr. Handelsman explained.
Going outside of the cancer center for mental health services makes sense if the patient already has a relationship with an outside therapist, Dr. Lamanna said. It was also necessary at times during the COVID-19 pandemic when Columbia’s team of mental health providers was swamped with patients. “When COVID hit, the problem was there weren’t enough therapists for patients. They were inundated just like everyone else,” she said. “It’s still challenging. We need more therapists.”
If patients need support but don’t want to talk to a therapist, Dr. Lamanna works with them on other techniques to reduce stress, like yoga, exercise, educational classes, acupuncture, or music or art therapy. She encourages them to find a little extra time each day or week to pursue their interests and make it a habit by programming it into their routine schedule via their cellphone.
Dos and Don’ts
Dr. Sharma advises oncologists to establish strong relationships with patients with chronic cancers because it is a long-term relationship and they need additional emotional support. “Connect with them in a way that the patient feels that you care,” she said. “Caring goes a long way, especially in an illness like this.”
She also advises not being afraid to ask how patients are doing emotionally. “It might take an extra five, 10, 15 minutes in that appointment, but it can be so invaluable in helping the patients cope with this long journey. Spend that time with them to find out how they are really dealing with it,” Dr. Sharma said.
It is also important not to minimize the experience of a patient with chronic cancer. Dr. Koffman, who is a retired family physician, said he often hears from other patients with CLL who are upset after hearing from their physician that they should be happy to have a chronic cancer.
“Never say, ‘This is the good cancer,’ or ‘If I had to choose a cancer, this is the one I would choose,’” Dr. Koffman said. “As a doctor, I know that I would rather have CLL than pancreatic cancer, but you should never use the word ‘good’ and ‘cancer’ in the same sentence with a patient.”
It is okay to remind patients that they should keep living their life and not let it be dominated by their cancer, he said. “In my 18 years of having CLL, there were probably several months where the CLL was it, and that’s all my life was about. But the rest — 17 and a half of those years — wasn’t all about CLL. It was about my family, my children, my grandchildren, and everything,” Dr. Koffman said.
References
- Pulte D, Jansen L, Brenner H. Changes in long term survival after diagnosis with common hematologic malignancies in the early 21st century. Blood Cancer J. 2020;10(5):56.
- Howell DA, McCaughan D, Smith AG, et al. Incurable but treatable: understanding, uncertainty and impact in chronic blood cancers-a qualitative study from the UK’s Haematological Malignancy Research Network. PLoS One. 2022;17(2):e0263672.
- American College of Surgeons. Optimal resources for cancer care: 2020 standards. 2019. Accessed Nov. 6, 2023. https://accreditation.facs.org/accreditationdocuments/CoC/Standards/Optimal_Resources_for_Cancer_Care_Feb_2023.pdf.