Table 3 Themes and representative quotes that emerged from thematic analysis (n = 27)

Provision of a survivorship care plan

No recall of receiving a SCP

Participant 7 (82-year-old male): Neither doctor gave me any particular path to follow after the treatment.

Participant 15 (80-year-old female): No, not really. He [oncologist] said to me you’re pretty independent. You seem to be relatively healthy.

Participant 13 (79-year-old female): P: No, I don’t think so. He [oncologist] does keep me up on my appointments, though.

Participant 9 (72-year-old male): The oncology center gave me all these handouts, but I was going to recommend that someone go through it with you in person with caregiver present and before you have the chemo as well.

Overwhelmed with too much paperwork

Participant 10 (83-year-old female): All the paperwork and everything that you get mentioned maintaining healthy lifestyle, healthy diet, but as far as actual discussion, no.

Participant 25 (65-year-old male): They overwhelm you with all this stuff [paperwork] and you start reading – a lot of it has such terms that you don’t understand.

Participant 29 (78-year-old male): When you look at the paperwork that you get when you leave the visits, they’re generally very complete and they make recommendations, but no one sat down with me and said, ‘Here are the things that you may confront, here’s how we would recommend you handle it.‘

No discussions on long-term effects of treatment

Participant 10 (82-year-old female): We didn’t really discuss it [expectations after treatment]; it’s like ‘You’re good’.

Participant 15 (69-year-old female): Well, we did not really discuss what’s down the road because we really can’t tell. Everybody’s different.

Participant 1 (76-year-old male): I guess I assumed when I was done with chemo, after a period of time the side effects were going to go away. Well, they’re not going away.

Communication regarding survivorship care

Lack of consideration for personal farm animals

Participant 1 (76-year-old male): He [the surgeon] told me he wanted to operate on the next Monday, and I told him I didn’t think I could get rid of the cows that fast because I’m a dairy farmer and I had 60 cows to milk every day. He said get somebody to take care of the cows. He didn’t care what I did and didn’t give me time to think about anything.

Participant 29 (78-year-old male): Our life is very centered around the animals. I don’t think that they [providers] know that.

Lack of communication between PCP and cancer care team

Participant 33 (72-year-old female): I’m assuming she [PCP] can access my medical information, but I really haven’t talked to her about it [cancer].

Participant 15 (69-year-old female): Everything is online, so I would assume he [PCP] gets all the information that everyone else does.

Participant 9 (72-year-old male): My primary care doctor wanted more information from him [oncologist] because he felt like he wasn’t getting enough information. He [PCP] had me give them messages to make sure he was getting the information.

Learning of cancer diagnosis through MyChart

Participant 17 (82-year-old female): MyChart is wonderful in one way in that you can see things right up front and you can communicate with your doctors and they get back to you right away. But on the other hand, it’s a little scary when you see, oh, I have cancer, you know?

Participant 14 (70-year-old female): The other thing that I just thought was horrible was I’ve been waiting for the results of the biopsy and they said, you know, within 48 h. So, it was past 48 h, and I hadn’t gotten anything, but 15 min after their office closed, I got those results in MyChart. And then I’m looking at them and I’m thinking I know what it says, but then I’m like wait a minute, you know, I’m not medically trained for anything here.

Diet and Physical Challenges

Lack of appetite/food tasting different

Participant 21 (82-year-old female): I don’t have the appetite I used to have. My weight has gone down quite a bit and things still don’t taste right to me.

Participant 19 (71-year-old female): After the chemotherapy, it was just what I could eat and they [healthcare team] were encouraging me to, but things didn’t taste good.

Difficulty with physical activity

Participant 10 (82-year-old female): With the oxygen, if I have to go to my pulmonary doctor, which is the 4th floor and it’s quite a walk, I had somebody go with me to carry the oxygen.

Participant 1 (76-year-old male): I’d like to get back to work, but I just can’t do a lot. I was born on this farm and I kind of kept my body young. I’ve always worked, I’ve always been active. I’d like to get things done the way they were, but then when you’re 76 years old I guess that don’t happen.

Transportation Challenges

Reliance on someone to take them to appointments

Participant 1 (76-year-old male): I’ve been here in this town so long and I don’t even know where anything is. I’m not a good driver. I don’t want to get in lot of traffic and stuff.

Participant 3 (76-year-old female): He [my son] took me to all those appointments and I have a friend that [also] takes me, because I won’t drive to the city.

Participant 23 (73-year-old female): I’m not comfortable driving because I’ve lost some of my peripheral vision. I have to have a ride wherever I go.

Coordinate overnight stay with family members in the city

Participant 33 (71-year-old female): What we would do because our daughter lives out there [in Rochester], we would come out the night before, spend the night, have the treatment, and then drive home after treatment.

Psychological Challenges

Medical regret

Participant 9 (72-year-old male): There were all sorts of issues with the chemotherapy that I feel like if I have to go through it again, I don’t know that I would want to. I think I would prefer the alternative. That’s how bad it is.

Participant 20 (72-year-old female): That first week after treatment, I felt like if this is what it is going to be like I think I made a mistake.

Fear of cancer recurrence

Participant 10 (82-year-old female): I wonder what’s ahead, seeing as I know this is a cancer that is apt to return, that’s at the back of my mind.

Participant 4 (66-year-old male): Every time a scan comes up, for a couple of weeks I get a little nervous.

Participant 25 (65-year-old male): There was ground glass opacity in one of my lungs in the upper lobe, she [the doctor] thought that it could be either metastatic lung cancer and that destroyed me.

Financial Toxicity

Financial Toxicity Present

Participant 1 (76-year-old male): I’ve been on this farm 73 years. I sold my cows. There is no income coming in, and I got 400 acres here and I got bills to pay.

Participant 9 (72-year-old male): I take Creon and I’ll have to take it for the rest of my life after the Whipple procedure. It costs me around $425 a month.

Participant 19 (71-year-old female): My one bill from chemo was over $3,000. They knocked it down to like $900 and I’m paying them like a hundred dollars a month.

Recommendations to improve survivorship care

Referral to a dietitian

Participant 14 (70-year-old female): I think it would have been good for me to have access to a good dietitian, who would have been able to work with me with my food allergy issues.

Participant 1 (76-year-old male): I asked about diet but the doctors here don’t seem to worry too much about that. He [doctor] told me to eat whatever I want.

Participant 9 (72-year-old male): Maybe nutrition info I would have liked. I know I should be eating nutritious meals.

Information on exercise

Participant 4 (65-year-old male): I’ve actually been thinking of asking is there any exercises that maybe I can start. You know, taking care of my body exercise-wise.

Participant 10 (82-year-old female): I’d like to do some more walking. I think it would help me.

Participant 17 (82-year-old female): I’ve been a very active person and I know quite a bit about nutrition, so I guess in my case, maybe they [healthcare team] thought it wasn’t needed.

Referral to Cancer Support Groups

Participant 19 (71-year-old female): Possibly [referral to] a support group. We had talked about this one time actually at the oncologist’s office, but it never happened.

Participant 10 (82-year-old female): I just want somebody to talk to. (82, female)

Discuss survivorship plan with patient

Participant 9 (72-year-old male): The oncology center gave me all these handouts but I was gonna recommend that someone go through it with you in person with caregiver present.

Participant 20 (72-year-old female): We didn’t sit down and hammer it [survivorship plan] out. I’ve gotten so much paperwork since this whole thing started that’s hard to even keep track of what I’ve got and what I don’t have. There is no discussion set up.