What Your Oncology Patients Aren't Telling You

What goes through the mind of someone who has had cancer when they return to the cancer center for routine follow-ups? For many, these visits trigger a complex mix of emotions that healthcare professionals might not fully appreciate. Drawing from personal experience, this episode offers critical insights for oncologists, nurses, and support staff about improving patient care beyond the medical aspects of treatment.

The psychological impact of cancer treatment lasts far beyond the final chemotherapy session or radiation treatment. Something as seemingly minor as conducting lab draws in the infusion room can trigger anxiety and traumatic memories for survivors. Similarly, measuring progress by hair growth rather than overall wellbeing can feel reductive to someone whose illness has affected every aspect of their life. These perspectives highlight how small adjustments in standard protocols can significantly improve patient experiences.

Mental health support often disappears once active treatment ends, yet many survivors experience depression and anxiety during recovery. When healthcare providers dismiss medication side effects or fail to coordinate care across specialties, patients feel unheard and overwhelmed. The episode advocates for a holistic approach that acknowledges the full spectrum of cancer's impact—physical, emotional, and psychological. For healthcare professionals, these insights offer a road map to more compassionate care that prioritizes health span over lifespan and treats the whole person rather than just the disease. If you work with cancer patients, these five recommendations could transform how your patients experience care at your facility.

Chapters

• 1:00 Introduction to Cancer Center Experience
• 1:28 Avoid Lab Draws in Infusion Rooms
• 2:21 Mental Health Beyond Treatment
• 3:24 Don't Measure Progress By Appearance
• 4:25 Take Patient Symptoms Seriously
• 6:40 Support Whole Body Health
• 9:37 Conclusion and Final Thoughts

Transcript

Speaker 0: 0:30

Okay.

Speaker 0: 0:30

If you're an oncologist, if you're an oncology nurse, if you're a social worker, if you're a lab tech and you work at a cancer center, today's podcast episode is for you. I'm going to be sharing five things that you can do to help people who have had cancer have a more pleasant experience when they walk through the doors for their routine exams, lab draws and so on. Number one please do not take our labs in the infusion room. Most cancer centers are set up so that there's a waiting room, then there's private rooms where you see your oncologist, and then there's like the radiation area, and then there's the infusion room, and this is the place where there's a bunch of chairs and it's a little bit isolated from the rest of the facility. Sometimes just thinking about walking into the infusion room and sitting down in the chemo chair gives me a lot of anxiety. Even though I know that all I'm doing there is getting my labs drawn, it's still not an experience that I personally like to relive every time I go to the cancer centers. So my first piece of advice is to please don't do our lab draw in the infusion room. Please don't make us sit in a chemo chair. Next, I feel like during treatment.

Speaker 0: 1:51

At every single appointment I was asked about my mental health and early on in my diagnosis my nurse navigator got me into counseling right away with a grant and a therapist who specialized in helping women who've had breast cancer and I think mental health was something that was talked a lot about during treatment. But as treatment progressed and as I came out of treatment now it's rarely discussed. Every six months I think, I fill out a questionnaire about if I'm sleeping and if I'm eating and if I'm exercising and if I feel depressed and down and sad and lonely and all of those things. If I have a support network and it doesn't really matter what I fill out on that worksheet, nothing changes and no one asks like how am I really doing? No one asks about my mental health. I was so depressed during treatment but I was also really depressed coming out of treatment. Maybe we need to talk a lot more about mental health in the cancer space and in the cancer recovery space.

Speaker 0: 2:54

My next one is kind of a pet peeve and if you've listened to the show before, you know that I'm going to say this please don't measure our progress by how we look and please don't make comments about how we look. Often it felt like going back to the cancer center. The one thing everybody could talk about was my hair, and it almost felt like people would say, oh, your hair's grown so much since your last appointment and I wanted my progress to not be measured by how long my hair was getting, but I wanted it to be measured by how I was feeling, how I was handling my medications, everything else that was going on in my life. So it's important to just look at our whole body here and not just measure our progress by our hair growth. That's sure, maybe a very small component of it, but also, how are we doing? How is the rest of our body doing? Next, please take us seriously when we say that something doesn't feel well or isn't going well.

Speaker 0: 3:55

I, in three and a half years, I've had three oncologists. I don't know why there's such a quick turnover of oncologists at my cancer center, but for the most part it's been really great, except we had an interim oncologist who I saw once, and when I saw her I was really having a hard time with the side effects from XMASdain and I had a lot of fatigue, nausea, bone and joint pain, headaches, blurred vision. I was really crabby, I was bloated, I'd gained all this weight, I was working out hard, I was tracking my macros and I should have been feeling really good physically and mentally with the amount of work that I was doing to take care of my body. And I just remember sitting down with this oncologist and she asked me how I was feeling and I was just super honest and I said I don't feel good. Here's what's going on. Here's my long list of symptoms. I can't continue to live like this. I want to feel good. I want to feel how I felt before I had cancer.

Speaker 0: 5:08

And she looked at me and she said that's not side effects from treatment. She said that's not side effects from treatment. She said that's just menopause. And every woman feels like that when they go through menopause. And I was instantly dismissed, as if how I was feeling did not even matter. And I knew that it was more than menopause, because I'm taking these medications every single day and my symptoms were so debilitating that it was just hard for me to function. That was a horrible, horrible, miserable experience with that particular oncologist. I definitely let the CEO of the hospital know that I did not appreciate her dismissing my feelings so quickly and not drawing them back to how these particular medications were making me feel. So maybe if you don't have compassion and empathy, oncology is certainly not the career path for you. I don't know, maybe go work at an urgent care or something where you can just see sprained ankles right. But that experience really left a sour taste in my mouth because I was just dismissed as being a whiner.

Speaker 0: 6:21

Finally, the last thing you can do to really help us out is to look at our whole body and support whatever whole body care we want. I am obsessed with health span over lifespan. I want to be healthy as I age. I want to feel healthy. I want to feel good. I don't want to live to a hundred years old and be sick and miserable. So I'm very focused on health span and doing a lot of things to make sure that I am healthy and strong. So support this quest for whole body care.

Speaker 0: 6:58

Those of us who've had cancer, we see a lot of doctors. We see primary care doc, we see medical oncologists, we see radiation oncology, plus any other specialties. We may need Physical therapy. I saw a cardiologist because of some heart things going on during treatment. There's just a lot and I feel like sometimes those entities are not talking to each other and it's our responsibility as people who've had cancer to make sure that our primary care doc is tracking what the medical oncologist is saying about us and our treatment.

Speaker 0: 7:31

And I had an experience where I had a new primary care doctor. So I was just at my annual exam and my primary care doctor said just at my annual exam. And my primary care doctor said hey, are you getting PET scans every year to make sure that cancer hasn't spread throughout your body? And I was like no, my oncologist never said anything about needing a PET scan. I just get mammograms and breast exams and that's not something I thought about. Is that something that I need? Because what if cancer is all over my body and I don't know about it? Do I need those? And she was like I think so Let me talk to our oncologist here. I go to the VA for my primary care.

Speaker 0: 8:07

So I went home from that appointment and I was like did my oncologist miss something?

Speaker 0: 8:10

Is my oncologist wrong? Should I be getting annual PET scans? But it was very confused because my primary care doctor kind of crossed into that oncology side and then I didn't know who was right and who to listen to, and it just caused a lot of confusion and chaos. So I know that as a patient, it's my responsibility to make sure that I'm conveying information from different doctors, but if doctors could maybe reduce some of that burden and talk to each other instead of making it our responsibility, that would be amazing, and I know that that might be asking a lot, but in a perfect world, that's what I would do. I would not do blood draws and infusion rooms. I would make sure to ask my patients about their mental health throughout every stage of their journey. I wouldn't measure their progress by how they look. I would act with empathy and compassion, and then I would want to treat the whole body and communicate with everybody on their medical team. So anyway, that is my rant today about what needs to be changed. Thanks for listening. I'll see you next week.