A ‘low-judgment zone’ needed to manage the psychosocial needs of breast cancer survivors
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A woman in her late 50s is currently receiving treatment for her second bout of breast cancer. She is thought to be in remission, but Neelam Desai, MD, worries about more than just the disease.
“I can tell she knows she needs to see someone,” Desai, a hematologist/oncologist at Atrium Health Levine Cancer Institute, told Healio. “There’s a lot of internal stigma around admitting that she has anxiety and depression, and getting help for it.”
Desai has referred her to social workers and psychiatrists on multiple occasions, but the patient declines. Still, Desai has the conversation with her whenever they meet.
“I try to understand and address whatever concerns she might have,” Desai said. “I just saw her recently and she was like, ‘Well, next time push me one more time, and I’ll see.’ I feel like she’s slowly getting to that point — so not giving up. You recognize sometimes they just need patience and kindness — and a low-judgment zone, which they might not have any other place.”
Bringing psychosocial needs to light
Healio previously reported that the American Cancer Society estimates there will be more than 310,000 breast cancer diagnoses in the U.S. in 2024, but because of improved detection and treatment, its researchers predicted the mortality rate to be less than 14%.
However, breast cancer survivors do not deal with just the disease. They face an additional lengthy list of psychosocial obstacles.
“They all go through many feelings of anxiety, depression. There is a subset who have documented posttraumatic stress disorder from their treatments,” Anne Blaes, MD, director of the Screening, Prevention, Etiology, and Cancer Survivorship Program at the Masonic Cancer Center, told Healio. “They go through a lot regarding fear of recurrence. Many have anxiety around the time of scans and appointments, and many patients will tell you, ‘I’m living from scan to scan.’
“We oftentimes use the word ‘grief’ to think about death, but many of them will have grief related to the loss of certain roles,” Blaes said. “I take care of a lot of young patients. They might have been parenting and not be able to do all the things with their kids that they want, or they needed to change their job based on the demands. They’ve dealt with a life-threatening illness, and sometimes friends and family don’t know how to respond to them.”
ounger breast cancer survivors’ fertility and ability to have children, Blaes said, adding that “many breast cancer survivors have a lot of psychosocial needs around menopausal symptoms, hot flashes, changes in sexual function and changes in body appearance.”
Confronting all those issues can be challenging for breast cancer survivors. In 2020, Amulya Prakash, MD, chair of medicine at Haywood Regional Medical Center, and colleagues published a study in Cureus that noted more than 77% of patients did not want their oncologist to initiate discussion of these psychosocial issues, but 57% wanted their oncologist to manage their symptoms if they had already been diagnosed.
“There is a lot of confusion among the patients,” Prakash told Healio.
It can also be difficult for oncologists, who are trying to guide patients through an overwhelming ordeal.
“The day you meet, they’re scared about cancer and what’s coming,” Desai said. “Then, they are worried about how to tell their family. Then, they’re dealing with all of it and trying to live their lives. Then, they’re dealing with all the side effects of endocrine therapy, which affect mood and sleep and weight and sense of self and everything. Then, when we finally taper down treatment, some of my patients tell me they feel more anxious because they were comforted in knowing that they were seeing us all the time. They felt like someone’s keeping an eye on them.”
Desai and fellow oncologists do not have the time to address every patient’s psychosocial needs in addition to discussing treatments and side effects. They need help.
“I’m a firm believer that there is a team in oncology care,” Blaes said, mentioning nurses, social workers and nutritionists, among others, who can help guide patients.
Timing can be difficult though. Patients are not always ready to talk about the potential issues until they are already experiencing them.
“Patients come in with a new diagnosis, and they meet with the nurse navigator and they’re given a binder of resources,” Blaes said.
“Most patients forgot they ever got that binder,” she added. “At the time, they were so worried about going through their initial treatment that they’re not worried about, let’s just say, sexual function. They might not really be worried about that until later.”
Solutions to psychosocial needs
Blaes, Desai and Prakash all stressed the importance of screening for anxiety and depression early in the process. Both Blaes and Desai said their patients go through a distress screening when they begin their care.
“Sadly, these things are not being used everywhere, and we do not have clear guidelines on this matter,” Prakash said.
Fertility and financial counseling should also be standard care for patients with breast cancer, Blaes added.
“The oncology team certainly needs to have resources to address these, and some of that is partnering with community resources as well,” Blaes said.
She said nonprofits can be extraordinarily beneficial to patients, but they are more accessible to some patients than others — although breastcancer.org and Susan G. Komen for the Cure are great places to start no matter a patient’s location.
Identifying which groups of women need the most help would also be useful.
“If you were designing a system, you’d want to identify who your highest risk group is,” Blaes said. “Is that your underserved populations and those with more financial constraints? Is it somebody with baseline anxiety at the beginning? Is it somebody without support from family or friends? Some of our own publications have looked at the fact that the stresses on single moms with breast cancer are enormous.”
Blaes, Desai and Prakash spoke about the importance of communication between oncologists and primary care physicians when treating patients. They said doctors must also communicate with patients that they need to advocate for themselves.
“I have a young patient in her 40s,” Blaes said. “She’s got teenage children. She went through chemotherapy, surgery, radiation; went on antiestrogen treatment; had severe anxiety on the medications to the point that we had to stop them. She’s now a couple of years out, and I would say this continues to be a really difficult problem for her.
“How have we addressed it?” she continued. “We’ve had open conversations about distress and the impact of antiestrogen therapy on her mental health. We’ve connected her with both therapists as well as psychiatrists. [Also] by medications. And I would say oftentimes we use a team approach around integrative health, so incorporating exercise and other well-being into that.”
Oncologists will not be able to solve every psychosocial need of their patients, but being aware of them, understanding patients may have a stronger connection to them than their PCPs, and understanding how to listen to them and refer them to clinicians that can assist them is imperative to improving care.
“We try to meet them where they are,” Desai said. “I try to always bring it up, but I don’t push people too much. I just say, ‘Whenever you’re ready, let me know. These are the resources we do have that can help you.’”
References:
- Prakash A, et al. Cureus. 2020;doi:10.7759/cureus.9171.
- Siegel RL, et al. CA Cancer J Clin. 2024;doi:10.3322/caac.21820.
For more information:
Anne Blaes, MD, can be reached at blaes004@umn.edu.
Neelam Desai, MD, can be reached at neelam.desai@atriumhealth.org.
Amulya Prakash, MD, can be reached at amulya.prakash.md@gmail.com.
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