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People with cancer should be wary of taking dietary supplements
Cancer dietitian Lisa Cianciotta often finds herself sitting across from a patient who suddenly fishes a bottle of antioxidant supplements from their bag and says, “My friend told me this works really well,” or “I read on the Internet that this is supposed to be really good for cancer.”
Although taking an antioxidant pill sounds harmless, Ms. Cianciotta, a clinical dietitian who works with cancer patients at New York–Presbyterian Hospital, knows well that this popular dietary supplement can interfere with a patient’s radiation or chemotherapy.
But many patients with cancer believe these over-the-counter vitamins, minerals, or herbal remedies will help them, and most use at least one dietary supplement alongside their cancer treatment.
And that leaves Ms. Cianciotta with a delicate conversation ahead of her.
. Popular dietary supplements may, for instance, cancel the effects of a cancer treatment, making it less effective, or increase serious side effects, such as liver toxicity. But in other cases, supplementation, such as vitamin D for patients who lack the vitamin, may be beneficial, Ms. Cianciotta said.
These drug-supplement interactions can be hard to pinpoint, given that more than two-thirds of doctors don’t know their patients are using supplements.
Here’s what patients need to know about the potential risks of supplement use during treatment, and how oncologists can address this thorny, often poorly understood topic with patients.
The complex drug-supplement landscape
The list of dietary supplements and how they can interact with different treatments and cancer types is long and nuanced.
But certain supplements appear to affect cancer treatments regardless of other things and should be avoided. Any supplement that strongly alters the body’s levels of the protein cytochromes P450 is one example. This group of enzymes plays a key role in metabolizing drugs, including chemotherapy and immunotherapy agents.
Certain supplements – most notably St. John’s wort extract – may decrease or increase the activity of cytochrome P450, which can then affect the concentrations of anticancer drugs in the blood, said William Figg, PharmD, an associate director of the Center for Cancer Research at the National Cancer Institute in Bethesda, Md. Studies show, for instance, that this common herbal supplement can increase the activity of cytochrome P450, resulting in lower levels of cancer drugs.
Outside of drug metabolism, patients with hormone-related cancers, such as breast and prostate cancers, should steer clear of dietary supplements that can alter levels of testosterone or estrogen, Dr. Figg said. The evergreen shrub ashwagandha, for example, is marketed to reduce stress and fatigue, but can also increase testosterone levels – a potential problem for those with prostate cancer receiving androgen deprivation therapy, which lowers testosterone levels.
Many oncologists counsel patients against using antioxidant-based dietary supplements – particularly turmeric and green tea extract – while they have radiation therapy and certain chemotherapies. These therapies work by creating an abundance of highly reactive molecules called free radicals in tumor cells, which increase stress within these cells, ultimately killing them off. Antioxidants, in theory, can neutralize this effect, said Skyler Johnson, MD, a radiation oncologist at Huntsman Cancer Institute at the University of Utah, Salt Lake City. Some studies suggest that antioxidant supplements may lessen the effects of radiation and chemotherapy, although the evidence is mixed.
Some dietary supplements, including high-dose green tea extract and vitamin A, can cause kidney or liver toxicity, and “many cancer patients already have compromised kidney or liver function,” said Jun J. Mao, MD, chief of integrative medicine at Memorial Sloan Kettering Cancer Center in New York. Even herbs that don’t interfere with how well a cancer drug works, such as stevia, can increase treatment-related side effects, such as nausea and vomiting.
Another potential problem with dietary supplements: It’s nearly impossible to know exactly what’s in them. For instance, just last year, the Food and Drug Administration sent nearly 50 warning letters to companies marketing dietary supplements. The issue is that federal regulations governing production are less strict for supplements than for medications. As a result, some supplements contain ingredients not listed on the label.
One historical example was the supplement PC-SPES, a mix of eight herbs, marketed to men with prostate cancer. The supplement was recalled in 2002 after certain batches were found to contain traces of prescription drugs, including diethylstilbestrol, ethinyl estradiol, warfarin, and alprazolam.
To further complicate matters, some dietary supplements can be helpful. Most patients with cancer “are malnourished and missing out on nutrients they could be getting from food,” said Ms. Cianciotta.
Patients are tested routinely for vitamin deficiencies and receive supplements as needed, she said. Vitamin D and folic acid are two of the most common deficiencies in this patient population. Vitamin D supplementation can improve outcomes in patients who have received a stem cell transplant by aiding engraftment and rebuilding the immune system, while folic acid supplementation can help to raise low red blood cell counts and hemoglobin levels.
Although she rarely sees vitamin toxicity, Ms. Cianciotta stressed that more is not always better and supplement use, even when it seems safe or warranted due to a deficiency, should be taken under supervision, and monitored carefully by the patient’s care team.
Bringing supplement use into the light
Too often, providers are unaware of a patient’s supplement use.
A core reason: Dietary supplements are often touted as natural, which many patients equate with safety, said Samantha Heller, a senior clinical nutritionist at New York (N.Y.) University Langone Health.
That means patients may not know a supplement can act like a drug and interfere with their cancer treatment, and thus may not see the importance of telling their doctors.
Still, the promise of herbs, vitamins, and minerals can be alluring, and there are many reasons patients decide to partake. One major appeal: Dietary supplements can help some patients feel empowered.
“Cancer is a disease that takes away a lot of control from the individual. Taking supplements or herbs is a way to regain some sense of control,” said Dr. Mao.
The phenomenon can also be cultural, he said. Some people grow up taking herbs and supplements to stay healthy or combat health woes.
Pressure or advice from family or friends who may think they are helping a loved one with their dietary recommendations may play a role as well. Friends and family “cannot prescribe chemo, but they can buy herbs and supplements,” Dr. Mao said.
Patients seeking greater control over their health or who feel high levels of anxiety may be more likely to take suggestions from friends and family or more likely to believe false or misleading claims about the efficacy or safety of supplements, explained medical oncologist William Dahut, MD, chief scientific officer for the American Cancer Society.
Plus, social media often amplifies and normalizes this misinformation, noted Dr. Johnson. In a 2021 study published in the Journal of the National Cancer Institute, he and colleagues found that one-third of the most popular articles on cancer treatment posted to social media in 2018 and 2019 contained false, inaccurate, or misleading information that was often harmful.
Some of the false claims centered on unproven, potentially unsafe herbal remedies, according to Dr. Johnson. These included “lung cancer can be cured with cannabis oil” and “golden berries cure and prevent cancer.”
Given exaggerated claims of “cures,” some patients may keep their supplement use under the radar out of fear they will be judged or criticized.
“Clinicians should avoid making patients feel judged or telling people not to go online to do their own research,” Dr. Johnson said.
Guiding patients, instead, to accurate sources of online information may be one way to help patients feel empowered, he said. Cancer.gov and the Memorial Sloan Kettering Cancer Center’s About Herbs database provide accessible and accurate information on dietary supplements and cancer treatment for both health care professionals and patients, he noted.
If a particular supplement is not safe during treatment, providers should be able to explain why, said Ms. Cianciotta. In a recent study, 80% of health care providers surveyed believed that interactions between herbals and medications could be problematic, but only 15% could explain why.
“Being able to explain why we are discouraging a particular supplement right now tends to be much better received than just telling a patient not to take something, because it is bad,” she said.
Another key is listening closely to patients to understand why they may be taking a particular supplement. Does the patient feel out of control? Is nausea a problem?
“Allowing patients to tell you why they are using a particular supplement will often reveal unmet needs or psychosocial challenges,” Dr. Mao said. This information can allow providers to suggest an evidence-based alternative, such as mindfulness meditation or acupuncture, to manage stress.
And if a patient has received a dietary supplement from well-meaning family and friends?
“Simply telling a patient that a given supplement is useless or harmful could create family tension,” said Dr. Mao.
Instead, he recommends reframing the issue.
“We want to have a better understanding of how patients are tolerating chemo or immunotherapy before throwing other things on top of it. Let them know that now may just not be the right time to add a supplement to the mix,” Dr. Mao said.
The bottom line: “Patients want to play an active role in their own care, and we want to help them do that in a safe way,” he said.
A version of this article first appeared on WebMD.com.
Cancer dietitian Lisa Cianciotta often finds herself sitting across from a patient who suddenly fishes a bottle of antioxidant supplements from their bag and says, “My friend told me this works really well,” or “I read on the Internet that this is supposed to be really good for cancer.”
Although taking an antioxidant pill sounds harmless, Ms. Cianciotta, a clinical dietitian who works with cancer patients at New York–Presbyterian Hospital, knows well that this popular dietary supplement can interfere with a patient’s radiation or chemotherapy.
But many patients with cancer believe these over-the-counter vitamins, minerals, or herbal remedies will help them, and most use at least one dietary supplement alongside their cancer treatment.
And that leaves Ms. Cianciotta with a delicate conversation ahead of her.
. Popular dietary supplements may, for instance, cancel the effects of a cancer treatment, making it less effective, or increase serious side effects, such as liver toxicity. But in other cases, supplementation, such as vitamin D for patients who lack the vitamin, may be beneficial, Ms. Cianciotta said.
These drug-supplement interactions can be hard to pinpoint, given that more than two-thirds of doctors don’t know their patients are using supplements.
Here’s what patients need to know about the potential risks of supplement use during treatment, and how oncologists can address this thorny, often poorly understood topic with patients.
The complex drug-supplement landscape
The list of dietary supplements and how they can interact with different treatments and cancer types is long and nuanced.
But certain supplements appear to affect cancer treatments regardless of other things and should be avoided. Any supplement that strongly alters the body’s levels of the protein cytochromes P450 is one example. This group of enzymes plays a key role in metabolizing drugs, including chemotherapy and immunotherapy agents.
Certain supplements – most notably St. John’s wort extract – may decrease or increase the activity of cytochrome P450, which can then affect the concentrations of anticancer drugs in the blood, said William Figg, PharmD, an associate director of the Center for Cancer Research at the National Cancer Institute in Bethesda, Md. Studies show, for instance, that this common herbal supplement can increase the activity of cytochrome P450, resulting in lower levels of cancer drugs.
Outside of drug metabolism, patients with hormone-related cancers, such as breast and prostate cancers, should steer clear of dietary supplements that can alter levels of testosterone or estrogen, Dr. Figg said. The evergreen shrub ashwagandha, for example, is marketed to reduce stress and fatigue, but can also increase testosterone levels – a potential problem for those with prostate cancer receiving androgen deprivation therapy, which lowers testosterone levels.
Many oncologists counsel patients against using antioxidant-based dietary supplements – particularly turmeric and green tea extract – while they have radiation therapy and certain chemotherapies. These therapies work by creating an abundance of highly reactive molecules called free radicals in tumor cells, which increase stress within these cells, ultimately killing them off. Antioxidants, in theory, can neutralize this effect, said Skyler Johnson, MD, a radiation oncologist at Huntsman Cancer Institute at the University of Utah, Salt Lake City. Some studies suggest that antioxidant supplements may lessen the effects of radiation and chemotherapy, although the evidence is mixed.
Some dietary supplements, including high-dose green tea extract and vitamin A, can cause kidney or liver toxicity, and “many cancer patients already have compromised kidney or liver function,” said Jun J. Mao, MD, chief of integrative medicine at Memorial Sloan Kettering Cancer Center in New York. Even herbs that don’t interfere with how well a cancer drug works, such as stevia, can increase treatment-related side effects, such as nausea and vomiting.
Another potential problem with dietary supplements: It’s nearly impossible to know exactly what’s in them. For instance, just last year, the Food and Drug Administration sent nearly 50 warning letters to companies marketing dietary supplements. The issue is that federal regulations governing production are less strict for supplements than for medications. As a result, some supplements contain ingredients not listed on the label.
One historical example was the supplement PC-SPES, a mix of eight herbs, marketed to men with prostate cancer. The supplement was recalled in 2002 after certain batches were found to contain traces of prescription drugs, including diethylstilbestrol, ethinyl estradiol, warfarin, and alprazolam.
To further complicate matters, some dietary supplements can be helpful. Most patients with cancer “are malnourished and missing out on nutrients they could be getting from food,” said Ms. Cianciotta.
Patients are tested routinely for vitamin deficiencies and receive supplements as needed, she said. Vitamin D and folic acid are two of the most common deficiencies in this patient population. Vitamin D supplementation can improve outcomes in patients who have received a stem cell transplant by aiding engraftment and rebuilding the immune system, while folic acid supplementation can help to raise low red blood cell counts and hemoglobin levels.
Although she rarely sees vitamin toxicity, Ms. Cianciotta stressed that more is not always better and supplement use, even when it seems safe or warranted due to a deficiency, should be taken under supervision, and monitored carefully by the patient’s care team.
Bringing supplement use into the light
Too often, providers are unaware of a patient’s supplement use.
A core reason: Dietary supplements are often touted as natural, which many patients equate with safety, said Samantha Heller, a senior clinical nutritionist at New York (N.Y.) University Langone Health.
That means patients may not know a supplement can act like a drug and interfere with their cancer treatment, and thus may not see the importance of telling their doctors.
Still, the promise of herbs, vitamins, and minerals can be alluring, and there are many reasons patients decide to partake. One major appeal: Dietary supplements can help some patients feel empowered.
“Cancer is a disease that takes away a lot of control from the individual. Taking supplements or herbs is a way to regain some sense of control,” said Dr. Mao.
The phenomenon can also be cultural, he said. Some people grow up taking herbs and supplements to stay healthy or combat health woes.
Pressure or advice from family or friends who may think they are helping a loved one with their dietary recommendations may play a role as well. Friends and family “cannot prescribe chemo, but they can buy herbs and supplements,” Dr. Mao said.
Patients seeking greater control over their health or who feel high levels of anxiety may be more likely to take suggestions from friends and family or more likely to believe false or misleading claims about the efficacy or safety of supplements, explained medical oncologist William Dahut, MD, chief scientific officer for the American Cancer Society.
Plus, social media often amplifies and normalizes this misinformation, noted Dr. Johnson. In a 2021 study published in the Journal of the National Cancer Institute, he and colleagues found that one-third of the most popular articles on cancer treatment posted to social media in 2018 and 2019 contained false, inaccurate, or misleading information that was often harmful.
Some of the false claims centered on unproven, potentially unsafe herbal remedies, according to Dr. Johnson. These included “lung cancer can be cured with cannabis oil” and “golden berries cure and prevent cancer.”
Given exaggerated claims of “cures,” some patients may keep their supplement use under the radar out of fear they will be judged or criticized.
“Clinicians should avoid making patients feel judged or telling people not to go online to do their own research,” Dr. Johnson said.
Guiding patients, instead, to accurate sources of online information may be one way to help patients feel empowered, he said. Cancer.gov and the Memorial Sloan Kettering Cancer Center’s About Herbs database provide accessible and accurate information on dietary supplements and cancer treatment for both health care professionals and patients, he noted.
If a particular supplement is not safe during treatment, providers should be able to explain why, said Ms. Cianciotta. In a recent study, 80% of health care providers surveyed believed that interactions between herbals and medications could be problematic, but only 15% could explain why.
“Being able to explain why we are discouraging a particular supplement right now tends to be much better received than just telling a patient not to take something, because it is bad,” she said.
Another key is listening closely to patients to understand why they may be taking a particular supplement. Does the patient feel out of control? Is nausea a problem?
“Allowing patients to tell you why they are using a particular supplement will often reveal unmet needs or psychosocial challenges,” Dr. Mao said. This information can allow providers to suggest an evidence-based alternative, such as mindfulness meditation or acupuncture, to manage stress.
And if a patient has received a dietary supplement from well-meaning family and friends?
“Simply telling a patient that a given supplement is useless or harmful could create family tension,” said Dr. Mao.
Instead, he recommends reframing the issue.
“We want to have a better understanding of how patients are tolerating chemo or immunotherapy before throwing other things on top of it. Let them know that now may just not be the right time to add a supplement to the mix,” Dr. Mao said.
The bottom line: “Patients want to play an active role in their own care, and we want to help them do that in a safe way,” he said.
A version of this article first appeared on WebMD.com.
Cancer dietitian Lisa Cianciotta often finds herself sitting across from a patient who suddenly fishes a bottle of antioxidant supplements from their bag and says, “My friend told me this works really well,” or “I read on the Internet that this is supposed to be really good for cancer.”
Although taking an antioxidant pill sounds harmless, Ms. Cianciotta, a clinical dietitian who works with cancer patients at New York–Presbyterian Hospital, knows well that this popular dietary supplement can interfere with a patient’s radiation or chemotherapy.
But many patients with cancer believe these over-the-counter vitamins, minerals, or herbal remedies will help them, and most use at least one dietary supplement alongside their cancer treatment.
And that leaves Ms. Cianciotta with a delicate conversation ahead of her.
. Popular dietary supplements may, for instance, cancel the effects of a cancer treatment, making it less effective, or increase serious side effects, such as liver toxicity. But in other cases, supplementation, such as vitamin D for patients who lack the vitamin, may be beneficial, Ms. Cianciotta said.
These drug-supplement interactions can be hard to pinpoint, given that more than two-thirds of doctors don’t know their patients are using supplements.
Here’s what patients need to know about the potential risks of supplement use during treatment, and how oncologists can address this thorny, often poorly understood topic with patients.
The complex drug-supplement landscape
The list of dietary supplements and how they can interact with different treatments and cancer types is long and nuanced.
But certain supplements appear to affect cancer treatments regardless of other things and should be avoided. Any supplement that strongly alters the body’s levels of the protein cytochromes P450 is one example. This group of enzymes plays a key role in metabolizing drugs, including chemotherapy and immunotherapy agents.
Certain supplements – most notably St. John’s wort extract – may decrease or increase the activity of cytochrome P450, which can then affect the concentrations of anticancer drugs in the blood, said William Figg, PharmD, an associate director of the Center for Cancer Research at the National Cancer Institute in Bethesda, Md. Studies show, for instance, that this common herbal supplement can increase the activity of cytochrome P450, resulting in lower levels of cancer drugs.
Outside of drug metabolism, patients with hormone-related cancers, such as breast and prostate cancers, should steer clear of dietary supplements that can alter levels of testosterone or estrogen, Dr. Figg said. The evergreen shrub ashwagandha, for example, is marketed to reduce stress and fatigue, but can also increase testosterone levels – a potential problem for those with prostate cancer receiving androgen deprivation therapy, which lowers testosterone levels.
Many oncologists counsel patients against using antioxidant-based dietary supplements – particularly turmeric and green tea extract – while they have radiation therapy and certain chemotherapies. These therapies work by creating an abundance of highly reactive molecules called free radicals in tumor cells, which increase stress within these cells, ultimately killing them off. Antioxidants, in theory, can neutralize this effect, said Skyler Johnson, MD, a radiation oncologist at Huntsman Cancer Institute at the University of Utah, Salt Lake City. Some studies suggest that antioxidant supplements may lessen the effects of radiation and chemotherapy, although the evidence is mixed.
Some dietary supplements, including high-dose green tea extract and vitamin A, can cause kidney or liver toxicity, and “many cancer patients already have compromised kidney or liver function,” said Jun J. Mao, MD, chief of integrative medicine at Memorial Sloan Kettering Cancer Center in New York. Even herbs that don’t interfere with how well a cancer drug works, such as stevia, can increase treatment-related side effects, such as nausea and vomiting.
Another potential problem with dietary supplements: It’s nearly impossible to know exactly what’s in them. For instance, just last year, the Food and Drug Administration sent nearly 50 warning letters to companies marketing dietary supplements. The issue is that federal regulations governing production are less strict for supplements than for medications. As a result, some supplements contain ingredients not listed on the label.
One historical example was the supplement PC-SPES, a mix of eight herbs, marketed to men with prostate cancer. The supplement was recalled in 2002 after certain batches were found to contain traces of prescription drugs, including diethylstilbestrol, ethinyl estradiol, warfarin, and alprazolam.
To further complicate matters, some dietary supplements can be helpful. Most patients with cancer “are malnourished and missing out on nutrients they could be getting from food,” said Ms. Cianciotta.
Patients are tested routinely for vitamin deficiencies and receive supplements as needed, she said. Vitamin D and folic acid are two of the most common deficiencies in this patient population. Vitamin D supplementation can improve outcomes in patients who have received a stem cell transplant by aiding engraftment and rebuilding the immune system, while folic acid supplementation can help to raise low red blood cell counts and hemoglobin levels.
Although she rarely sees vitamin toxicity, Ms. Cianciotta stressed that more is not always better and supplement use, even when it seems safe or warranted due to a deficiency, should be taken under supervision, and monitored carefully by the patient’s care team.
Bringing supplement use into the light
Too often, providers are unaware of a patient’s supplement use.
A core reason: Dietary supplements are often touted as natural, which many patients equate with safety, said Samantha Heller, a senior clinical nutritionist at New York (N.Y.) University Langone Health.
That means patients may not know a supplement can act like a drug and interfere with their cancer treatment, and thus may not see the importance of telling their doctors.
Still, the promise of herbs, vitamins, and minerals can be alluring, and there are many reasons patients decide to partake. One major appeal: Dietary supplements can help some patients feel empowered.
“Cancer is a disease that takes away a lot of control from the individual. Taking supplements or herbs is a way to regain some sense of control,” said Dr. Mao.
The phenomenon can also be cultural, he said. Some people grow up taking herbs and supplements to stay healthy or combat health woes.
Pressure or advice from family or friends who may think they are helping a loved one with their dietary recommendations may play a role as well. Friends and family “cannot prescribe chemo, but they can buy herbs and supplements,” Dr. Mao said.
Patients seeking greater control over their health or who feel high levels of anxiety may be more likely to take suggestions from friends and family or more likely to believe false or misleading claims about the efficacy or safety of supplements, explained medical oncologist William Dahut, MD, chief scientific officer for the American Cancer Society.
Plus, social media often amplifies and normalizes this misinformation, noted Dr. Johnson. In a 2021 study published in the Journal of the National Cancer Institute, he and colleagues found that one-third of the most popular articles on cancer treatment posted to social media in 2018 and 2019 contained false, inaccurate, or misleading information that was often harmful.
Some of the false claims centered on unproven, potentially unsafe herbal remedies, according to Dr. Johnson. These included “lung cancer can be cured with cannabis oil” and “golden berries cure and prevent cancer.”
Given exaggerated claims of “cures,” some patients may keep their supplement use under the radar out of fear they will be judged or criticized.
“Clinicians should avoid making patients feel judged or telling people not to go online to do their own research,” Dr. Johnson said.
Guiding patients, instead, to accurate sources of online information may be one way to help patients feel empowered, he said. Cancer.gov and the Memorial Sloan Kettering Cancer Center’s About Herbs database provide accessible and accurate information on dietary supplements and cancer treatment for both health care professionals and patients, he noted.
If a particular supplement is not safe during treatment, providers should be able to explain why, said Ms. Cianciotta. In a recent study, 80% of health care providers surveyed believed that interactions between herbals and medications could be problematic, but only 15% could explain why.
“Being able to explain why we are discouraging a particular supplement right now tends to be much better received than just telling a patient not to take something, because it is bad,” she said.
Another key is listening closely to patients to understand why they may be taking a particular supplement. Does the patient feel out of control? Is nausea a problem?
“Allowing patients to tell you why they are using a particular supplement will often reveal unmet needs or psychosocial challenges,” Dr. Mao said. This information can allow providers to suggest an evidence-based alternative, such as mindfulness meditation or acupuncture, to manage stress.
And if a patient has received a dietary supplement from well-meaning family and friends?
“Simply telling a patient that a given supplement is useless or harmful could create family tension,” said Dr. Mao.
Instead, he recommends reframing the issue.
“We want to have a better understanding of how patients are tolerating chemo or immunotherapy before throwing other things on top of it. Let them know that now may just not be the right time to add a supplement to the mix,” Dr. Mao said.
The bottom line: “Patients want to play an active role in their own care, and we want to help them do that in a safe way,” he said.
A version of this article first appeared on WebMD.com.
‘Financial toxicity’: Harsh side effect of cancer care
When 32-year-old Brittany Dicks was diagnosed with stage II triple negative breast cancer in January 2022, she wasn’t worried about the cost of treatment. A medical assistant in Charleston, S.C., Ms. Dicks had full-time employment with health benefits.
But when she wasn’t able to work for several months because of chemotherapy and its side effects, Ms. Dicks lost her job. Her health insurance coverage ended in May. And although she filed for Medicaid at the beginning of June, it wasn’t approved until September.
Meanwhile, Ms. Dicks still needed treatment. She estimates that she ran up close to $20,000 in medical debt while finishing chemotherapy during the 4 months she was uninsured.
The surgeon she had seen since her diagnosis terminated her care when she could no longer pay her bills. That left her delaying a much-needed mastectomy.
“I don’t sleep at night,” said Ms. Dicks, a single mother of two young kids, ages 3 and 11. “Mentally, I’m drained. Just because I have cancer, doesn’t mean the bills aren’t due every month.”
As soon as she felt well enough over the summer, she started working as a part-time delivery driver for DoorDash to help pay for food and gas.
But that was just a Band-Aid. Even when her new insurance kicked in, covering the costs of daily life remained a struggle.
Ms. Dicks is still in deep medical debt. Her Medicaid has covered new medical expenses, and she hopes Medicaid will reimburse her for the debt she incurred over the summer while she waited for her coverage to kick in. So far, though, Medicaid has not touched her $20,000 debt.
“I fear that I’m not going to be able to dig out of this hole,” Ms. Dicks said.
Researchers who study the financial impacts of cancer have a term for Ms. Dicks’ experience: financial toxicity.
Financial toxicity is a catchall term for the burden many Americans with cancer experience.
“Financial toxicity is a multidimensional concept. There’s both a material burden and a psychosocial one,” said Grace Li Smith, MD, PhD, MPH, a radiation oncologist at the University of Texas MD Anderson Cancer Center, Houston.
Researchers are also now beginning to understand the psychological effects these financial burdens can have on patients and their family.
“Financial toxicity is not unique to the patient,” said Dr. Li Smith. It “very directly impacts the whole family or household.”
Stifling financial pressures
Early in her career, Dr. Li Smith was already seeing how her patients’ worries extended beyond their physical disease.
One of Dr. Li Smith’s first patients told her their greatest worry wasn’t whether the treatment would work or what physical toxicity to expect, it was how they would pay for their care.
“There was much more anxiety and true distress about the financial burden than about the treatment itself,” Dr. Li Smith recalled.
This fear about the costs of cancer care is well founded. In the United States, cancer treatment costs reached an estimated $150 billion in 2020 and continue to rise. Patients shoulder a significant portion of that burden – with one study estimating that patients paid $21 billion for their cancer care in 2019.
The burden is often compounded by decreased income. Between 40% and 85% of patients with cancer needed to take time off work or quit their jobs during treatment. And for those, like Dicks, who find themselves with no insurance, out-of-pocket costs can quickly skyrocket.
In fact, one study of newly diagnosed cancer patients over age 50 reported that more than 42% of patients fully depleted their financial assets and around 30% incurred debt by the second year of their diagnosis.
Younger adults may be even more financially vulnerable. A study of patients in Washington found that those under 65 – which represent about half of cancer cases – were two to five times more likely to declare bankruptcy than patients over 65.
Dr. Li Smith and colleagues have found that younger patients aged 18-64 experienced greater monetary hardships, which meant less money for food, worse adherence to medications, as well as greater distress and anxiety overall. In fact, younger adults were over 4.5 times more likely to encounter severe financial toxicity, compared with older adults, and about 4 times more likely to experience severe psychological effects from this burden.
The distress, if left unchecked, can spiral out of control.
Molly MacDonald had just gone through a financially devastating divorce in 2005 when she was diagnosed with breast cancer. Recently out of work and dealing with a $1,300 monthly COBRA premium, the mother of five had no financial safety net. She risked having her car repossessed and her utilities shut off.
“I gave tentative thought to how I could take my life and make it look like an accident,” said Ms. MacDonald. “I thought the kids would be better off without me.”
For some, the loss of income can be even more worrisome than the medical bills. Some patients may go back to work during treatment, often against medical advice.
When Stephanie Caputo, 43, of Monroe, N.J., began treatment for stage III breast cancer in 2021, her physician recommended she stop working. Treatment would make her immunocompromised, and her job in a medical clinic could expose her to harmful pathogens, including the coronavirus.
Ms. Caputo went on disability and received $900 every 2 weeks. But that wasn’t enough to pay her mortgage, let alone cover her other monthly expenses as a single mother of 4 teenagers.
After finishing chemotherapy, and during radiation, Ms. Caputo went back to work, part time, against her doctor’s advice.
“My doctor is telling me I can’t work, but I also can’t have my house go into default,” said Ms. Caputo.
But being on her feet through 12-hour shifts made treatment side effects, especially back and joint pain, kick into overdrive. “The physicality of my job was really difficult to tolerate,” she said.
The physical burden was too great to take on more work, but the extra money also wasn’t enough to keep her afloat. Fortunately, her brother stepped in and covered 6 months of her mortgage payments.
Financial toxicity impacts families
Although financial toxicity research to date has largely focused on the patient, researchers are also starting to understand that family members and caregivers often share in the burden.
“We are just at the beginning of realizing that this is a real problem,” said Fumiko Chino, MD, a radiation oncologist at Memorial Sloan Kettering Cancer Center, New York.
Dr. Chino and colleagues recently showed that family members of patients with cancer were more likely to delay or forgo medical care than family members of people without cancer. The study found the effect was greatest among family members of younger adults with cancer.
“The caregiver and family burden related to cancer diagnosis and treatment is really underappreciated,” said Dr. Chino. “Family members and caregivers are neglecting their own health concerns, passing up career opportunities, struggling with financial concerns.”
Dr. Chino speaks from personal experience. When her fiancé, later husband, was diagnosed with neuroendocrine carcinoma in 2005, Dr. Chino quit her job as art director at a television production company to take care of him.
The couple, both in their 20s, struggled to afford his care. Dr. Chino put her own dental, medical, and mental health care on hold. She never, for instance, went to physical therapy to address injuries sustained sleeping in hospital chairs and moving around her husband who was over 6 feet tall. At one point, she walked with a limp.
Dr. Chino’s husband passed away in 2007, and even 15 years later, her injury from sleeping in hospital chairs remains “a significant physical burden,” she said. But like many caregivers “I wasn’t really thinking about my own health.”
Danielle Hadfield, 35, an ED nurse in Rochester, N.Y., also delayed her own care when her mom got sick.
Ms. Hadfield quit her job shortly after her mom was diagnosed with cholangiocarcinoma in August 2020. Ms. Hadfield knew her mom, who lived 3.5 hours away in Albany, N.Y., would need a lot of care in the upcoming months.
“I knew this was going to be the last year or so of her life, and I wanted to be there for her,” said Ms. Hadfield.
When Ms. Hadfield quit her job, she and her husband – who was self-employed – purchased health insurance coverage through the New York state marketplace. The monthly insurance payments for Ms. Hadfield, who was pregnant with her second child, her husband, and their toddler cost as much as the family’s monthly mortgage payments.
In addition to providing childcare for her young daughter and making frequent trips to Albany, Ms. Hadfield began a side business as a legal nurse consultant, working mostly at night, to replace a portion of her lost income. During this time, she began to experience pain attacks that would migrate through her body along with intermittent tongue and facial numbness. She ignored these health issues for nearly a year, until after her mother died in November 2021.
Only after her mother passed away did Ms. Hadfield begin seeking answers to her own pain. In September 2022, she finally got them. She had a nerve condition called small-fiber sensory neuropathy.
But even with a diagnosis, she is still facing more tests to root out the cause and understand the best treatment.
Is help out there?
What can physicians do to help patients and families at risk for financial toxicity?
Specific guidelines for dealing with financial toxicity do not exist in most professional guidelines, nor are there standard screening tools to identify it, said Dr. Li Smith.
These gaps put pressure on physicians to ask about financial barriers and concerns, but most do not know how to broach the topic or how to help. “Physicians may not know how to fix the problem or what resources exist,” Dr. Li Smith said.
Patients and family members, on the other hand, are often reluctant to bring up cost with physicians. Some may be ashamed to talk about their financial problems while others may fear doing so will prevent them from being offered the best possible treatments, said Ms. MacDonald.
But, experts say, financial toxicity needs to be dealt with head on. That means involving financial navigators or counselors and social workers who can, for instance, help patients and families find financial support for their basic living expenses.
From a research perspective, more clinical trials should include financial toxicity outcomes, said Joshua Palmer, MD, a radiation oncologist at the University of Michigan, Ann Arbor.
Dr. Palmer and colleagues recently showed that the number of radiation therapy clinical trials including financial toxicity endpoints increased significantly from 2001 to 2020, though the absolute rate of inclusion remains low, at roughly 1.5% of radiation therapy-based clinical trials including financial toxicity endpoints from 2016 to 2020.
“Financial burden is part of the broader discussion about shared decision-making,” said Dr. Palmer.
In shared decision-making, physicians discuss the risks and benefits of different treatment options, empowering the patient to make an informed choice with the physician.
What we want to avoid is patients feeling like they will get inferior care, if they have financial barriers, said Dr. Palmer.
And every little bit can help. In 2006, Ms. MacDonald started the Pink Fund – a nonprofit to help patients with cancer cover nonmedical cost-of-living expenses. Both Ms. Caputo and Ms. Dicks received grants from the Pink Fund. For Ms. Caputo, the funds covered 2 months of car payments and for Ms. Dicks, it covered 2 months of rent.
While the one-time grant was a big help, said Ms. Dicks, “cancer is an everyday thing.” And “we all deserve peace of mind” when trying to heal.
A version of this article first appeared on WebMD.com.
When 32-year-old Brittany Dicks was diagnosed with stage II triple negative breast cancer in January 2022, she wasn’t worried about the cost of treatment. A medical assistant in Charleston, S.C., Ms. Dicks had full-time employment with health benefits.
But when she wasn’t able to work for several months because of chemotherapy and its side effects, Ms. Dicks lost her job. Her health insurance coverage ended in May. And although she filed for Medicaid at the beginning of June, it wasn’t approved until September.
Meanwhile, Ms. Dicks still needed treatment. She estimates that she ran up close to $20,000 in medical debt while finishing chemotherapy during the 4 months she was uninsured.
The surgeon she had seen since her diagnosis terminated her care when she could no longer pay her bills. That left her delaying a much-needed mastectomy.
“I don’t sleep at night,” said Ms. Dicks, a single mother of two young kids, ages 3 and 11. “Mentally, I’m drained. Just because I have cancer, doesn’t mean the bills aren’t due every month.”
As soon as she felt well enough over the summer, she started working as a part-time delivery driver for DoorDash to help pay for food and gas.
But that was just a Band-Aid. Even when her new insurance kicked in, covering the costs of daily life remained a struggle.
Ms. Dicks is still in deep medical debt. Her Medicaid has covered new medical expenses, and she hopes Medicaid will reimburse her for the debt she incurred over the summer while she waited for her coverage to kick in. So far, though, Medicaid has not touched her $20,000 debt.
“I fear that I’m not going to be able to dig out of this hole,” Ms. Dicks said.
Researchers who study the financial impacts of cancer have a term for Ms. Dicks’ experience: financial toxicity.
Financial toxicity is a catchall term for the burden many Americans with cancer experience.
“Financial toxicity is a multidimensional concept. There’s both a material burden and a psychosocial one,” said Grace Li Smith, MD, PhD, MPH, a radiation oncologist at the University of Texas MD Anderson Cancer Center, Houston.
Researchers are also now beginning to understand the psychological effects these financial burdens can have on patients and their family.
“Financial toxicity is not unique to the patient,” said Dr. Li Smith. It “very directly impacts the whole family or household.”
Stifling financial pressures
Early in her career, Dr. Li Smith was already seeing how her patients’ worries extended beyond their physical disease.
One of Dr. Li Smith’s first patients told her their greatest worry wasn’t whether the treatment would work or what physical toxicity to expect, it was how they would pay for their care.
“There was much more anxiety and true distress about the financial burden than about the treatment itself,” Dr. Li Smith recalled.
This fear about the costs of cancer care is well founded. In the United States, cancer treatment costs reached an estimated $150 billion in 2020 and continue to rise. Patients shoulder a significant portion of that burden – with one study estimating that patients paid $21 billion for their cancer care in 2019.
The burden is often compounded by decreased income. Between 40% and 85% of patients with cancer needed to take time off work or quit their jobs during treatment. And for those, like Dicks, who find themselves with no insurance, out-of-pocket costs can quickly skyrocket.
In fact, one study of newly diagnosed cancer patients over age 50 reported that more than 42% of patients fully depleted their financial assets and around 30% incurred debt by the second year of their diagnosis.
Younger adults may be even more financially vulnerable. A study of patients in Washington found that those under 65 – which represent about half of cancer cases – were two to five times more likely to declare bankruptcy than patients over 65.
Dr. Li Smith and colleagues have found that younger patients aged 18-64 experienced greater monetary hardships, which meant less money for food, worse adherence to medications, as well as greater distress and anxiety overall. In fact, younger adults were over 4.5 times more likely to encounter severe financial toxicity, compared with older adults, and about 4 times more likely to experience severe psychological effects from this burden.
The distress, if left unchecked, can spiral out of control.
Molly MacDonald had just gone through a financially devastating divorce in 2005 when she was diagnosed with breast cancer. Recently out of work and dealing with a $1,300 monthly COBRA premium, the mother of five had no financial safety net. She risked having her car repossessed and her utilities shut off.
“I gave tentative thought to how I could take my life and make it look like an accident,” said Ms. MacDonald. “I thought the kids would be better off without me.”
For some, the loss of income can be even more worrisome than the medical bills. Some patients may go back to work during treatment, often against medical advice.
When Stephanie Caputo, 43, of Monroe, N.J., began treatment for stage III breast cancer in 2021, her physician recommended she stop working. Treatment would make her immunocompromised, and her job in a medical clinic could expose her to harmful pathogens, including the coronavirus.
Ms. Caputo went on disability and received $900 every 2 weeks. But that wasn’t enough to pay her mortgage, let alone cover her other monthly expenses as a single mother of 4 teenagers.
After finishing chemotherapy, and during radiation, Ms. Caputo went back to work, part time, against her doctor’s advice.
“My doctor is telling me I can’t work, but I also can’t have my house go into default,” said Ms. Caputo.
But being on her feet through 12-hour shifts made treatment side effects, especially back and joint pain, kick into overdrive. “The physicality of my job was really difficult to tolerate,” she said.
The physical burden was too great to take on more work, but the extra money also wasn’t enough to keep her afloat. Fortunately, her brother stepped in and covered 6 months of her mortgage payments.
Financial toxicity impacts families
Although financial toxicity research to date has largely focused on the patient, researchers are also starting to understand that family members and caregivers often share in the burden.
“We are just at the beginning of realizing that this is a real problem,” said Fumiko Chino, MD, a radiation oncologist at Memorial Sloan Kettering Cancer Center, New York.
Dr. Chino and colleagues recently showed that family members of patients with cancer were more likely to delay or forgo medical care than family members of people without cancer. The study found the effect was greatest among family members of younger adults with cancer.
“The caregiver and family burden related to cancer diagnosis and treatment is really underappreciated,” said Dr. Chino. “Family members and caregivers are neglecting their own health concerns, passing up career opportunities, struggling with financial concerns.”
Dr. Chino speaks from personal experience. When her fiancé, later husband, was diagnosed with neuroendocrine carcinoma in 2005, Dr. Chino quit her job as art director at a television production company to take care of him.
The couple, both in their 20s, struggled to afford his care. Dr. Chino put her own dental, medical, and mental health care on hold. She never, for instance, went to physical therapy to address injuries sustained sleeping in hospital chairs and moving around her husband who was over 6 feet tall. At one point, she walked with a limp.
Dr. Chino’s husband passed away in 2007, and even 15 years later, her injury from sleeping in hospital chairs remains “a significant physical burden,” she said. But like many caregivers “I wasn’t really thinking about my own health.”
Danielle Hadfield, 35, an ED nurse in Rochester, N.Y., also delayed her own care when her mom got sick.
Ms. Hadfield quit her job shortly after her mom was diagnosed with cholangiocarcinoma in August 2020. Ms. Hadfield knew her mom, who lived 3.5 hours away in Albany, N.Y., would need a lot of care in the upcoming months.
“I knew this was going to be the last year or so of her life, and I wanted to be there for her,” said Ms. Hadfield.
When Ms. Hadfield quit her job, she and her husband – who was self-employed – purchased health insurance coverage through the New York state marketplace. The monthly insurance payments for Ms. Hadfield, who was pregnant with her second child, her husband, and their toddler cost as much as the family’s monthly mortgage payments.
In addition to providing childcare for her young daughter and making frequent trips to Albany, Ms. Hadfield began a side business as a legal nurse consultant, working mostly at night, to replace a portion of her lost income. During this time, she began to experience pain attacks that would migrate through her body along with intermittent tongue and facial numbness. She ignored these health issues for nearly a year, until after her mother died in November 2021.
Only after her mother passed away did Ms. Hadfield begin seeking answers to her own pain. In September 2022, she finally got them. She had a nerve condition called small-fiber sensory neuropathy.
But even with a diagnosis, she is still facing more tests to root out the cause and understand the best treatment.
Is help out there?
What can physicians do to help patients and families at risk for financial toxicity?
Specific guidelines for dealing with financial toxicity do not exist in most professional guidelines, nor are there standard screening tools to identify it, said Dr. Li Smith.
These gaps put pressure on physicians to ask about financial barriers and concerns, but most do not know how to broach the topic or how to help. “Physicians may not know how to fix the problem or what resources exist,” Dr. Li Smith said.
Patients and family members, on the other hand, are often reluctant to bring up cost with physicians. Some may be ashamed to talk about their financial problems while others may fear doing so will prevent them from being offered the best possible treatments, said Ms. MacDonald.
But, experts say, financial toxicity needs to be dealt with head on. That means involving financial navigators or counselors and social workers who can, for instance, help patients and families find financial support for their basic living expenses.
From a research perspective, more clinical trials should include financial toxicity outcomes, said Joshua Palmer, MD, a radiation oncologist at the University of Michigan, Ann Arbor.
Dr. Palmer and colleagues recently showed that the number of radiation therapy clinical trials including financial toxicity endpoints increased significantly from 2001 to 2020, though the absolute rate of inclusion remains low, at roughly 1.5% of radiation therapy-based clinical trials including financial toxicity endpoints from 2016 to 2020.
“Financial burden is part of the broader discussion about shared decision-making,” said Dr. Palmer.
In shared decision-making, physicians discuss the risks and benefits of different treatment options, empowering the patient to make an informed choice with the physician.
What we want to avoid is patients feeling like they will get inferior care, if they have financial barriers, said Dr. Palmer.
And every little bit can help. In 2006, Ms. MacDonald started the Pink Fund – a nonprofit to help patients with cancer cover nonmedical cost-of-living expenses. Both Ms. Caputo and Ms. Dicks received grants from the Pink Fund. For Ms. Caputo, the funds covered 2 months of car payments and for Ms. Dicks, it covered 2 months of rent.
While the one-time grant was a big help, said Ms. Dicks, “cancer is an everyday thing.” And “we all deserve peace of mind” when trying to heal.
A version of this article first appeared on WebMD.com.
When 32-year-old Brittany Dicks was diagnosed with stage II triple negative breast cancer in January 2022, she wasn’t worried about the cost of treatment. A medical assistant in Charleston, S.C., Ms. Dicks had full-time employment with health benefits.
But when she wasn’t able to work for several months because of chemotherapy and its side effects, Ms. Dicks lost her job. Her health insurance coverage ended in May. And although she filed for Medicaid at the beginning of June, it wasn’t approved until September.
Meanwhile, Ms. Dicks still needed treatment. She estimates that she ran up close to $20,000 in medical debt while finishing chemotherapy during the 4 months she was uninsured.
The surgeon she had seen since her diagnosis terminated her care when she could no longer pay her bills. That left her delaying a much-needed mastectomy.
“I don’t sleep at night,” said Ms. Dicks, a single mother of two young kids, ages 3 and 11. “Mentally, I’m drained. Just because I have cancer, doesn’t mean the bills aren’t due every month.”
As soon as she felt well enough over the summer, she started working as a part-time delivery driver for DoorDash to help pay for food and gas.
But that was just a Band-Aid. Even when her new insurance kicked in, covering the costs of daily life remained a struggle.
Ms. Dicks is still in deep medical debt. Her Medicaid has covered new medical expenses, and she hopes Medicaid will reimburse her for the debt she incurred over the summer while she waited for her coverage to kick in. So far, though, Medicaid has not touched her $20,000 debt.
“I fear that I’m not going to be able to dig out of this hole,” Ms. Dicks said.
Researchers who study the financial impacts of cancer have a term for Ms. Dicks’ experience: financial toxicity.
Financial toxicity is a catchall term for the burden many Americans with cancer experience.
“Financial toxicity is a multidimensional concept. There’s both a material burden and a psychosocial one,” said Grace Li Smith, MD, PhD, MPH, a radiation oncologist at the University of Texas MD Anderson Cancer Center, Houston.
Researchers are also now beginning to understand the psychological effects these financial burdens can have on patients and their family.
“Financial toxicity is not unique to the patient,” said Dr. Li Smith. It “very directly impacts the whole family or household.”
Stifling financial pressures
Early in her career, Dr. Li Smith was already seeing how her patients’ worries extended beyond their physical disease.
One of Dr. Li Smith’s first patients told her their greatest worry wasn’t whether the treatment would work or what physical toxicity to expect, it was how they would pay for their care.
“There was much more anxiety and true distress about the financial burden than about the treatment itself,” Dr. Li Smith recalled.
This fear about the costs of cancer care is well founded. In the United States, cancer treatment costs reached an estimated $150 billion in 2020 and continue to rise. Patients shoulder a significant portion of that burden – with one study estimating that patients paid $21 billion for their cancer care in 2019.
The burden is often compounded by decreased income. Between 40% and 85% of patients with cancer needed to take time off work or quit their jobs during treatment. And for those, like Dicks, who find themselves with no insurance, out-of-pocket costs can quickly skyrocket.
In fact, one study of newly diagnosed cancer patients over age 50 reported that more than 42% of patients fully depleted their financial assets and around 30% incurred debt by the second year of their diagnosis.
Younger adults may be even more financially vulnerable. A study of patients in Washington found that those under 65 – which represent about half of cancer cases – were two to five times more likely to declare bankruptcy than patients over 65.
Dr. Li Smith and colleagues have found that younger patients aged 18-64 experienced greater monetary hardships, which meant less money for food, worse adherence to medications, as well as greater distress and anxiety overall. In fact, younger adults were over 4.5 times more likely to encounter severe financial toxicity, compared with older adults, and about 4 times more likely to experience severe psychological effects from this burden.
The distress, if left unchecked, can spiral out of control.
Molly MacDonald had just gone through a financially devastating divorce in 2005 when she was diagnosed with breast cancer. Recently out of work and dealing with a $1,300 monthly COBRA premium, the mother of five had no financial safety net. She risked having her car repossessed and her utilities shut off.
“I gave tentative thought to how I could take my life and make it look like an accident,” said Ms. MacDonald. “I thought the kids would be better off without me.”
For some, the loss of income can be even more worrisome than the medical bills. Some patients may go back to work during treatment, often against medical advice.
When Stephanie Caputo, 43, of Monroe, N.J., began treatment for stage III breast cancer in 2021, her physician recommended she stop working. Treatment would make her immunocompromised, and her job in a medical clinic could expose her to harmful pathogens, including the coronavirus.
Ms. Caputo went on disability and received $900 every 2 weeks. But that wasn’t enough to pay her mortgage, let alone cover her other monthly expenses as a single mother of 4 teenagers.
After finishing chemotherapy, and during radiation, Ms. Caputo went back to work, part time, against her doctor’s advice.
“My doctor is telling me I can’t work, but I also can’t have my house go into default,” said Ms. Caputo.
But being on her feet through 12-hour shifts made treatment side effects, especially back and joint pain, kick into overdrive. “The physicality of my job was really difficult to tolerate,” she said.
The physical burden was too great to take on more work, but the extra money also wasn’t enough to keep her afloat. Fortunately, her brother stepped in and covered 6 months of her mortgage payments.
Financial toxicity impacts families
Although financial toxicity research to date has largely focused on the patient, researchers are also starting to understand that family members and caregivers often share in the burden.
“We are just at the beginning of realizing that this is a real problem,” said Fumiko Chino, MD, a radiation oncologist at Memorial Sloan Kettering Cancer Center, New York.
Dr. Chino and colleagues recently showed that family members of patients with cancer were more likely to delay or forgo medical care than family members of people without cancer. The study found the effect was greatest among family members of younger adults with cancer.
“The caregiver and family burden related to cancer diagnosis and treatment is really underappreciated,” said Dr. Chino. “Family members and caregivers are neglecting their own health concerns, passing up career opportunities, struggling with financial concerns.”
Dr. Chino speaks from personal experience. When her fiancé, later husband, was diagnosed with neuroendocrine carcinoma in 2005, Dr. Chino quit her job as art director at a television production company to take care of him.
The couple, both in their 20s, struggled to afford his care. Dr. Chino put her own dental, medical, and mental health care on hold. She never, for instance, went to physical therapy to address injuries sustained sleeping in hospital chairs and moving around her husband who was over 6 feet tall. At one point, she walked with a limp.
Dr. Chino’s husband passed away in 2007, and even 15 years later, her injury from sleeping in hospital chairs remains “a significant physical burden,” she said. But like many caregivers “I wasn’t really thinking about my own health.”
Danielle Hadfield, 35, an ED nurse in Rochester, N.Y., also delayed her own care when her mom got sick.
Ms. Hadfield quit her job shortly after her mom was diagnosed with cholangiocarcinoma in August 2020. Ms. Hadfield knew her mom, who lived 3.5 hours away in Albany, N.Y., would need a lot of care in the upcoming months.
“I knew this was going to be the last year or so of her life, and I wanted to be there for her,” said Ms. Hadfield.
When Ms. Hadfield quit her job, she and her husband – who was self-employed – purchased health insurance coverage through the New York state marketplace. The monthly insurance payments for Ms. Hadfield, who was pregnant with her second child, her husband, and their toddler cost as much as the family’s monthly mortgage payments.
In addition to providing childcare for her young daughter and making frequent trips to Albany, Ms. Hadfield began a side business as a legal nurse consultant, working mostly at night, to replace a portion of her lost income. During this time, she began to experience pain attacks that would migrate through her body along with intermittent tongue and facial numbness. She ignored these health issues for nearly a year, until after her mother died in November 2021.
Only after her mother passed away did Ms. Hadfield begin seeking answers to her own pain. In September 2022, she finally got them. She had a nerve condition called small-fiber sensory neuropathy.
But even with a diagnosis, she is still facing more tests to root out the cause and understand the best treatment.
Is help out there?
What can physicians do to help patients and families at risk for financial toxicity?
Specific guidelines for dealing with financial toxicity do not exist in most professional guidelines, nor are there standard screening tools to identify it, said Dr. Li Smith.
These gaps put pressure on physicians to ask about financial barriers and concerns, but most do not know how to broach the topic or how to help. “Physicians may not know how to fix the problem or what resources exist,” Dr. Li Smith said.
Patients and family members, on the other hand, are often reluctant to bring up cost with physicians. Some may be ashamed to talk about their financial problems while others may fear doing so will prevent them from being offered the best possible treatments, said Ms. MacDonald.
But, experts say, financial toxicity needs to be dealt with head on. That means involving financial navigators or counselors and social workers who can, for instance, help patients and families find financial support for their basic living expenses.
From a research perspective, more clinical trials should include financial toxicity outcomes, said Joshua Palmer, MD, a radiation oncologist at the University of Michigan, Ann Arbor.
Dr. Palmer and colleagues recently showed that the number of radiation therapy clinical trials including financial toxicity endpoints increased significantly from 2001 to 2020, though the absolute rate of inclusion remains low, at roughly 1.5% of radiation therapy-based clinical trials including financial toxicity endpoints from 2016 to 2020.
“Financial burden is part of the broader discussion about shared decision-making,” said Dr. Palmer.
In shared decision-making, physicians discuss the risks and benefits of different treatment options, empowering the patient to make an informed choice with the physician.
What we want to avoid is patients feeling like they will get inferior care, if they have financial barriers, said Dr. Palmer.
And every little bit can help. In 2006, Ms. MacDonald started the Pink Fund – a nonprofit to help patients with cancer cover nonmedical cost-of-living expenses. Both Ms. Caputo and Ms. Dicks received grants from the Pink Fund. For Ms. Caputo, the funds covered 2 months of car payments and for Ms. Dicks, it covered 2 months of rent.
While the one-time grant was a big help, said Ms. Dicks, “cancer is an everyday thing.” And “we all deserve peace of mind” when trying to heal.
A version of this article first appeared on WebMD.com.