ABC7 | Dr.Ginny Mason:Working together to help breast cancer patients recover

The decisions faced by cancer patients are often many and complex. At present, the doctor-patient co-decision model is widely used in cancer patients. At the 7th International Consensus Conference on Advanced Breast Cancer (ABC7) “Patient advocacy session: Complexities of shared decision making “featured experts discussing complexities of shared decision making among patients.Oncology Frontier invited Dr.Ginny Mason, the host of the show, to introduce the common psychological problems of breast cancer patients and how to deal with them.

Oncology Frontier:What are the common psychological problems of breast cancer patients?

Dr.Ginny Mason:There are a lot of different things. I think often the most challenging piece perhaps is the depression that can come with a cancer diagnosis, with so much in the media about cancer, we make our decisions about how we’re going to face it based on what we’ve seen. Other people do frequently. And so your mind goes straight to the worst case scenario you’ve seen. And for many people, that may be someone who was treated sometime before so that they maybe aren’t as aware that current treatments maybe aren’t as hard. We have better ways of dealing with side effects and things. But I think it’s terrifying.

Most of us when we’re diagnosed with cancer haven’t had personal experience with it before. We know about cancer, breast cancer in particular. But you’re having to adjust to a whole lot of things. Plus, and that’s on top of your regular life. And that’s a lot to process. I think we don’t necessarily provide the support to patients. We see treatment as the very important piece to the doctor who’s going to make sure you get well. But we forget the emotional, the spiritual, just the rest of our lives.

How do you cope with all the other demands on your time?And we’re not programmed maybe to ask for help. Because we want to prove we can do it. We’re strong. We’re women. And there’s that tendency to want to be the superwoman because, oh, we can handle this. But on the side, you may be falling apart. And so it’s just a very difficult time because I think you have lots and lots of different emotions. And not quite sure what to do with all of them. You may be afraid to even mention to doctors that I’m having trouble sleeping. Or, you know, I just am not coping well. I want to just keep on going. And that’s not a sign of weakness. And in fact, it’s a sign of strength to recognize that you need that help.

Oncology Frontier:How to provide psychological support and comfort for breast cancer patients?

Dr.Ginny Mason:A lot depends on where someone’s receiving their treatment. There are some facilities that have built right into their program to provide those kinds of what they call psychosocial supports. That maybe a counselor works with a cancer center or they have support groups. There are a lot of people who will just kind of toss aside a support group thinking, that’s just a bunch of women who are going to complain about having cancer. But there’s incredible power that comes from hearing from someone else who’s experiencing many of the same things that perhaps you are afraid to voice. And it can take something that does not feel very normal and normalize it to find out you’re not the only one who feels that way, that other people feel like that.

Someone else might say, you know, I can’t sleep. I’m having real difficulty with this. And you go, oh, I’m not the only one that’s, you know, up walking around in the middle of the night because I’m worried about what’s going to happen. Or how are my children handling this? There’s so many things going on and your friends and your family don’t quite understand what you’re facing. And they can be very helpful, but they don’t see it from the same perspective as someone else who’s facing it. Even if your experiences aren’t identical, that’s not necessary. I think most patients find incredible support from others who are experiencing the same kind of thing. And knowing if you have access to a social worker or someone who knows the field, is used to working with cancer patients. So that you don’t have to explain in great detail that you know that this is the kind of thing they’ve worked with before. I know many people struggle with friends not understanding. Especially if you’re on treatments that you don’t lose your hair. People think, oh, you really can’t be that sick. Or if you’re trying to go to work and you’re trying to keep as much of a normal life as possible. I think some people will say you’re like a duck, that you look very calm. Or a swan on the top, but underneath your feet are going 100 miles an hour trying to cope with what’s going on. And I think many patients find themselves in that position. We have all this social media and things now where you can find people. But sometimes you really need that face-to-face with someone else. And maybe just a hug from someone who is going through something similar. There’s a bond there.

Oncology Frontier:When should a breast cancer patient seek professional counseling or treatment?

Dr.Ginny Mason:I would probably say early and often. I think sometimes we wait because we think we can cope. And then things start to fall apart. And then it’s harder to pull things back together. If we go too long before we finally recognize I’m not handling this well. And that you need to seek some assistance, whether it be a therapist, a support group, whatever kind of support that will be most useful. I think there is a tendency not to do that early on, as we’ve heard in some of the talks here: When does a doctor give a patient, quote-unquote, bad news? So if you start to address some of those things early on, they can normalize. If a doctor would say, this could be really scary. And I can see why you might feel anxious. Are you sleeping well? Asking those questions. Because not everyone is going to volunteer it. And it’s important to raise those issues. And that really falls on the medical community to be doing those things. To make it easier for a patient to speak up and say, things are just not going well.

Oncology Frontier:How do family members handle communication with breast cancer patients?

Dr.Ginny Mason:That probably is different from family to family. I think that is also difficult for a patient. Because sometimes you have family who don’t want to hear what is actually going on. And so as the patient, you become the caregiver for your family. Because you’re trying to figure out what can they handle, what can’t they handle. I’ve worked with patients over the years who choose not to say much to family. Simply because they don’t seem to cope well with it. Sometimes if you have living parents, they are having a very difficult time realizing they might outlive their child. Even if it’s an adult child. That’s not how it’s supposed to work. And so sometimes that creates a lot of family friction. You don’t want to be able, you can’t say what you really feel. You feel like you have to take care of them and you’re the one that’s needing care as a patient. And I think a lot of women find themselves in that role. And you even have friends who can’t cope with your diagnosis. It’s too scary for them because they see themselves in your experience and go, this isn’t safe. It could happen to this friend. I could be next. And so I think it’s going to be different from family to family, how you cope with that. But that puts an extra burden on the patient to try and figure that out. As we heard in an earlier presentation today, there are families who will tell the doctor, oh, we don’t want mom to know what’s going on. And yet the doctor feels like the patient needs to be aware of what’s happening. And when they don’t agree on those pieces, it puts the patient in the middle. And that’s a difficult place to be. You’re already dealing with enough. You don’t need to play a caregiver to your family members and cope with your diagnosis. It’s enough for you to have to do it on your own.