lymphoma patients continue to suffer from fear, anxiety and depression
8 minute read
this year, the lymphoma coalition stands tall behind the “we can’t wait – to focus on our feelings” campaign for world lymphoma awareness day on sept. 15 in an effort to encourage and empower patients to talk about their mental health challenges.
getty images
stay up to date on this topic
when guy bouguet was diagnosed with follicular lymphoma, he knew the treatment he needed to survive would challenge his body in ways he couldn’t prepare for. but despite gruelling radiotherapy, chemotherapy, a marrow transplant and an allograft, it’s the emotional and mental trauma that stands out decades later.
“i feel detached sometimes from important things,” he says. “feeling like it’s [cancer] still here, even though i’m far away from it.”
an engineer by trade, bouguet, 58, took a “mechanical approach” to dealing with his diagnosis. consuming himself in research to understand the cancer and treatment options helped, but an invasive fear remained.
“all patients are different and all patients put in place their own mechanism to cope with this emotional part,” he says. “some of them will talk about it. some of them will do some research. … some people will collapse completely.
“i had an emotional shock because to me cancer was associated with death.”
lymphoma is a type of blood cancer that attacks a part of the body’s immune system, known as the lymphatic system. there are two main kinds of lymphoma – hodgkin lymphoma and non-hodgkin lymphoma. this cancer often commands a medical approach that is heavily skewed towards physical treatments like chemotherapy, radiation, and targeted therapies.
bouguet, who also lost his father to cancer, underwent radiotherapy and chemotherapy after his diagnosis in 2000 before receiving a marrow transplant in 2003. he received an allograft when the cancer returned in 2005 and has been in remission since.
and while these treatments are undoubtedly crucial, there’s an often-overlooked aspect: the emotional and mental health of the patient.
patients live with fear, anxiety, depression and, most importantly, a stigma that hangs a heavy cloud over the ability to openly talk about these emotional and mental health challenges. even when patients do muster up the courage to share their feelings, the healthcare system isn’t always equipped to hear them and act accordingly.
advertisement
”it’s a consistently unaddressed issue because patients talk about the huge impact it [emotional and mental health] has on their well-being,” says lorna warwick, ceo of the lymphoma coalition, a global network of organizations dedicated to supporting patients with lymphoma.
“yet when they bring it up to their doctors, they don’t necessarily get support that’s helpful, and there isn’t usually a re-check from the doctors to see if it’s still a continuing issue for them.”
this year, the lymphoma coalition stands tall behind the “we can’t wait – to focus on our feelings” campaign for world lymphoma awareness day on sept. 15 in an effort to encourage and empower patients to talk about their mental health challenges.
lymphoma coalition 2023 survey: psychological impact of lymphoma
the lymphoma coalition conducts a patient survey every two years with respondents around the world living with lymphomas and chronic lymphocytic leukaemia (cll) to understand how their experiences change – for better or for worse.
the 2023 survey “psychological impact of lymphoma” highlights the increase in psychosocial issues experienced by the respondents in 2022 compared to those in 2020. these issues include forms of anxiety, concerns around body images, relationships changes, depression, fear, isolation, loss of self-esteem, and/or post-traumatic stress disorder.
“every time we ask about what’s having the biggest impact on patients’ quality of life or their well-being, definitely fear rises to the surface,” warwick says.
—
—
the results – four out of five respondents experienced one or more psychosocial issues in the last year – shed light on significant risks to lymphoma patients as a lack of attention to issues like fear, anxiety and depression result in a lack of adherence to treatment plans, unwillingness to use the healthcare services available, decreased quality of life and even lower chances of survival.
advertisement
additionally, numerous studies over the last 30 years also show a correlation between psychosocial care and more positive outcomes through improving patient knowledge of their condition, coping methods, emotional adjustments and satisfaction with their care.
“we know some of the anxiety and depression and fear can be related to a lack of understanding about their disease in general,” warwick adds. “if patients get some really good information on the potential impact of anxiety, depression and fear and what they should do and when it becomes something that would require them to get some external support, that would help ease a lot for patients.”
“when you look at clinical practice guidelines that look at distress, they recommend right away that everybody gets information, but only a small percentage of our patients are getting that.”
distress guidelines are another challenge altogether. they exist across the globe, but the lymphoma coalition survey says the consistent execution of those guidelines is hit and miss, especially in clinical practice.
it’s not for lack of trying either. major regulatory bodies have their own set of guidelines to screen and treat cancer patients with emotional and mental health issues, including the american society of clinical oncology (asco), the european society of medical oncology (esmo), the national comprehensive cancer center (nccn). the international psycho-oncology society (ipos) standard on quality cancer care calls psychosocial care a “universal human right.”
“the tools that are recommended in those distressed clinical practice guidelines again are really simple,” warwick highlights. “it’s something a patient fills out when they go into the clinic. it’s very short questions and all the doctor, or even if they’re assigning it to somebody else in the clinic, the nurse, whoever that might be, needs to do is look at it and see if there are signs of significant distress and then recommend extra support for those people.”
advertisement
there is a reasonable amount of responsibility that falls to the physicians of these suffering patients, the survey highlights and warwick echos. on the frontline of disease management, physicians can act as gatekeepers to important screening, monitoring and treatment options.
a proactive physician also leads to proactive and empowered patients.
“if somebody asks you the question, it’s harder to ignore, right?” warwick asks, referring to distress screening practices. “from a patient perspective, if they really understood better the connection between the psychological and how that can impact their actual physical well-being, they might be more likely to talk about it and get some support.”
living with lymphoma and learning to talk about it
having moved to france from the united states around the time of his diagnosis, bouguet’s initial instinct was to research information about follicular lymphoma and the support services in the u.s. while there was plenty of information and resources in the u.s., there was a significant absence of options in france. it was the lack of resources in france that inspired him to found the patient organization france lymphome espoir, now named ensemble leucémie lymphomes espoir (ellye), in 2006.
despite being in remission today, bouguet, who is the standing president of ellye, admits the fear of recurrence (for) never leaves you. the lymphoma coalition survey shows that 50 per cent of respondents suffer from for while 47 per cent suffer from fear of progression (fop), which is the worry that the condition will worsen.
“you stop making plans, like long-term plans and short and medium-term plans … and the whole family and the whole ecosystem around the family and the social environment has to adapt,” he says, also referring to a french phrase that translates to “sword hanging over your head ready to fall” in english. (épée de damoclès or sword of damocles references events in a person’s life that cause a constant fear of impending tragedy)
advertisement
“we still have difficulties to plan the future because it’s [fear of recurrence] still here.”
it’s been a long physical and emotional journey for bouguet over the last two decades. the trauma of the experience changed him then and continues to change him now, especially as organizations around the world – ellye and lymphoma coalition included – strive to empower patients to talk about their condition and the feelings that plague them.
“if you don’t talk about it, it does not exist,” he says, remembering how he first felt about living with cancer. “i know today, it’s completely wrong, because if you don’t talk about it, if you don’t let it out, then it’s still part of you.
“by expressing your emotion, people around you are going to understand what you’re going through, and it’s not negative to feel sad or to feel stressed and insecure about the treatment and the future.”
sharing his experience with others, encouraging self care and empowering people to speak honestly about their emotional and mental health challenges has become his calling. through all the pain and suffering, triumphs and tribulations, physical and emotional hardships, bouguet wants others to know they aren’t alone.
he wishes he knew it much sooner.
“the mistake that i made is i didn’t use those ears that were around me,” he says. “so talk to people.
“to the health system – it’s important to provide the option to patients to have access to a psychologist or to groups where patients can express themselves, among themselves, and share their emotions.”
lymphoma coalition turning information into action
warwick and all the members of the lymphoma coalition are working tirelessly to break down barriers and have their voices heard by the institutions that can make a difference.
the immediate efforts focus on more awareness for the emotional and mental health of lymphoma patients, which comes through a myriad of campaigns, a video series and other informational materials to provide to patient associations, member associations, thought leaders at in-person events, regulatory bodies and community advisory boards.
advertisement
after awareness comes practice, where warwick hopes to see more implementation of mental health screening processes and trials to continue to improve the treatment of lymphoma patients living with psychosocial issues.
“as this becomes more of a priority even from a trial perspective or what doctors are seeing from different opportunities that are coming into the clinic, it may help them integrate things differently into their general practice as well,” she says. “so we’re constantly trying to think of different ways that we can pull this back into larger-scale conversation.”
thank you for your support. if you liked this story, please send it to a friend. every share counts.
share story
