The Patient’s Perspective on how Treatment for HER2-positive Breast Cancer impacts Daily Life

Julie Fisher, MD: On one end of the spectrum, I have patients who have tremendous difficulty, and on the other end of the spectrum, I have patients who seem to get through chemotherapy with minimal difficulty and surprise themselves by how well they feel. I’d say most people fall someplace in the middle; would you say that that’s where you’re lying?

Jocelyn Mueller: Yes, very much so. It is hard; I think I said this round has been not as hard as the first but definitely harder than rounds two and three. It’s hard not to focus on the fact that I have two more treatments. I think what I need to focus on is I know, because this is my fourth time doing it, that by the end of these three weeks I’m going to feel pretty normal again. I think that’s what you can’t see in that first round, because you haven’t been through it, you are hit so hard and you’re so wiped out, and you think, “I can’t do this five more times.” However, by the time you get to two and a half weeks you think, “Oh, I actually feel pretty normal. Oh no, now I have to go do this again.” It’s holding onto that feeling that “I know I’m going to feel better again.” I think I didn’t do a great job of focusing on that when I was at my lowest point on this round. But yes, there are ways to mitigate a lot of these issues.

Probably the hardest are the emotional ones. I’m a preschool teacher. You talked about the immune system being suppressed. It was not a great idea in any environment at any time for me to teach preschool while I’m doing this, certainly not in the middle of a pandemic. So not only am I exhausted, but I’m also not working. That’s very hard for me, to feel like I’ve lost part of my identity or part of my purpose in the day. That’s probably another piece that I would think people could struggle with.

Julie Fisher, MD: Sure. I would imagine that it certainly can be a very consuming process. It depends on the job, and it depends on the person; pre-pandemic it was sometimes a little easier to continue working to some extent. Obviously, the pandemic has changed that depending on people; if you’re working with preschool kids, it’s a different level of risk. The treatment can become a consuming process, and I can very much understand that. I haven’t been through chemotherapy, but goodness knows I certainly empathize with my patients, who I try to walk through chemotherapy. I try to remind people as often as possible: it’s a dark, rainy season and it sometimes can feel like a long, never-ending season, but this is a short season in the grand scheme of things. We’re certainly hopeful that we’re getting the results that we’re seeing at least on your exam.

Jocelyn Mueller: A great piece of advice I got was, “You didn’t choose this, you can’t avoid it, but in the very near future this is going to be part of your history.”

Julie Fisher, MD: Exactly.

Jocelyn Mueller: “You are going to get through this, and it’s going to be in the rearview mirror.” That thought has helped me a lot.

Julie Fisher, MD: Obviously, I prescribe the chemotherapy. I am not typically in the infusion suite; I am typically in my office seeing other patients. How frequent are your treatment appointments? How long are you there typically?

Jocelyn Mueller: I’m there every three weeks on Tuesdays, and I’m there for usually about six hours. The initial one was about eight hours, I think because you slow down the administration to make sure I’m not having an adverse reaction to any of it; however, I did fine.

Julie Fisher, MD: Your treatment is through a port.

Jocelyn Mueller: Yes, a port.

Julie Fisher, MD: For anyone watching who doesn’t know what a port is, it’s implanted, either surgically, or at our center typically, it is placed by the radiologist. I describe it as a semipermanent IV [intravenous line]. It’s under the surface of the skin and accessed via a special needle. It dwells, if you will, in one of the larger veins that leads to the heart. Since it’s in there semi-permanently, it’s a sure thing, instead of coming into infusion and having them looking for a different peripheral vein every time. Are you comfortable with the port? Do you have any difficulties with the port?

Jocelyn Mueller: I have a love-hate relationship with the port. I had a friend years ago who I took to chemotherapy a couple of times, and I watched them trying to find a vein. I sat there with her, and she would tell them it was burning as it was going in her vein, so they would have to slow down the flow, and we would be there for longer. I knew I did not want to live that. I also knew with the Herceptin [trastuzumab] and Perjeta [pertuzumab] being a year-long administration, that the port was definitely the route to go. I don’t love feeling it under my skin; I’ve been having a few issues with it. It’s bruised; even with the numbing cream, it really has hurt when they’ve accessed it the last few times. However, I prefer it. I don’t feel anything when the chemo’s going in; there’s no burning sensation, there are no issues at all. They access it one time while I’m there, and then just change out and flush it in between each medication administration. When I leave, they pull the needle out, and I’m good to go.

Julie Fisher, MD: We talked about at one of our recent office visits the difficulty that you are experiencing with the port. If we decide that Herceptin/Perjeta is the way to go, this would be a great example of when we would want to talk about, hey, are we going to be able to access the subcutaneous formulation? That might be more pleasant than wrestling with the port for the next six months.

Jocelyn Mueller: I strongly encourage women on this same regimen or who have this many treatments, that the port is definitely the way to go.

Transcript edited for clarity.