Table 4 Impacts of financial toxicity

1. Struggles to meet basic needs

Sometimes, we didn’t even have enough [money] to buy tortillas or anything. I had a very good neighbor who saw we had nothing to eat. She was the one who helped us…I could not buy shoes for my son. It was cold then, and I could not buy a sweater for my child. I would sew it if it tore. All of this affected all of us (Patient, 35 YO).

I’ve tried to be more manageable about electricity. For example, I try to cut the air conditioning down, as much as possible so the electricity bill wouldn’t be so high. (Daughter, 21 YO)

I think the challenge comes when monthly income stops coming in, and now they have to figure out, “How do I pay for my rent?” “How do I pay for my gas, electric [bill], car payment?” all those different things, you know? (HCP, 48 YO)

2. Psychological distress

I was very desperate because I knew that we had to make payments and I could no longer help. My husband was the one who had to pay for everything or had to ask my daughters for money to be able to make the payments. It stressed me out a lot, apart from everything that had happened… (Patient, 49 YO)

I knew she was worried about her bills. She still has a mortgage and bills to pay, and she still has my younger sister who depended on her at the time because she was still in high school. She didn’t have a job. So finances were definitely a reason why I was stressed, as well as her health, of course. (Daughter, 31 YO)

Financially it affected us a lot…suddenly I ask “where do I go or how do I do it?”. You panic and it takes time to assimilate what is coming. And that is the reality. (Husband, 45 YO)

Patients can easily fall into a depression, not just because of the disease, but just kind of the overwhelming situation….So, not having the financial resources in place can definitely lead to a lot of stress, distress, and anxiety during their treatment. (HCP, 48 YO)

3. Changes in family’s daily activities and employment

My other daughter was a senior at the time, and she was going to care for my grandson while another daughter (grandson’s mom) drove me to the clinic. So, she dropped out of high school to take care of him. That was her sacrifice. She loved school. She’s a smart girl, you know”? (Patient, 55 YO)

I don’t get a full-time check anymore. I have to take her to appointments [so I have to miss work]. Sometimes bosses don’t understand. You explain to them “Would you give me a chance to leave early today?” Sometimes they say no [saying], “Don’t you know that you work full-time if you don’t want to do eight hours look for another job somewhere else.” (Husband, 45 YO)

I was trying to manage two things at once: school and taking care of my mom. Unfortunately, it didn’t really go so well because it did affect my grades. I wasn’t really focusing all that much on school because I was focusing more on my mother, who needed my help. Yeah, it was difficult balancing it out. (Son, 22 YO)

4. Family stress and strain

I guess, at times I do get mad just because, you know, like. Okay, now what? “I’m already doing all this”, so sometimes it can create conflict because everything’s back together…(Daughter, 30 YO)

Several patients were getting divorced in the middle of treatment, and then trying to navigate through that while on treatment is extremely difficult…(HCP, 37 YO)

5. Discontinuation or forgoing of cancer treatment

There was a medication that Medi-Cal (state health insurance) did not cover. It was for my white cell count. I just didn’t have it. I’m like, “Oh, maybe next time”. (Patient, 55 YO)

I have patients who disappear right in the middle of a course of treatment. The patients, sometimes later, come back with more problems. But it is mainly because they lost insurance coverage…(HCP, 51 YO)