Compartmentalizing Stigma and Support in Ovarian Cancer

Transcript:

Shubham Pant, M.D.: Doña, when you were diagnosed, I know you got a lot of help with your diagnosis, people said a lot of helpful things, your support group was great. Did you face any stigma when you were diagnosed with it? Anything that was not really helpful but that people talked to you about?

Doña Harman: I heard a lot about integrative medicine. I’m not sure of the total definition, but in terms of diet and what you should and shouldn’t eat. And to me, for me personally, that was like crazy land. You know, the mushrooms or the this or the that. Then I thought, “I can’t handle all that.” So I chose to focus on the science and stuff that had gone through rigorous training or rigorous examination by scientists.

I put that aside. But I think with people trying to help, sometimes you’re just sensitive. For me, I was much more private about what was going on with me. I just wanted to put my head down, get through the treatments. As I said, I like keeping my hair. I really didn’t want to have my cancer seen first and then me seen second. And so what that did is it really, really delineated people whom I felt close to. I drew them closer and maybe put up more barriers to other people just for preservation, because it made me feel comfortable.

I don’t think I hurt a lot. One comment I remember somebody said, we went out to dinner with someone I didn’t know well, and when we were leaving, she said to me, “You look really good right now.”

Shubham Pant, M.D.: Right now.

Doña Harman: And that’s what I said, “Right now?”

Shubham Pant, M.D.: I don’t know if that was a compliment or…

Doña Harman: And she said, “Well, we hope you always look that good.” And so I remember thinking, “No, I’m not going to see her so much anymore.”

Shubham Pant, M.D.: And you can make your choices. Dr. Hirst, what do you think as far as patients getting diagnosed with cancer? What is helpful, unhelpful? There are a lot of opinions coming in from everywhere. What do you tell the patients about what you can do? I think Doña did really good things. She pulled the people who were close to her closer. Maybe she decided to share what she wanted to share with selective sharing. But what do you see with patients and how can they deal with that?

Jeremy Hirst, M.D.: For some folks who have more external evidence of disease or have chosen to be more open about it, people can all of a sudden start changing how they react to you. I hear a lot of people saying, “People say really weird things to me. They’re always coming up with advice that I wasn’t asking for or looking at me cross-eyed if I am eating too much sugar. ‘Don’t you know that’s feeding the cancer?’ ” Or whatever it may be, which can be very negative. People can try to treat you more delicately or exclude you from things because they think, oh, you won’t be able to handle it. Trying to decide where, as a patient, you feel more comfortable and getting those people around you to support you is important.

And being your own advocate. “Oh, this is how I’m actually doing. You don’t need to treat me as if I’m a fragile ceramic doll.” Or maybe today I am feeling like fragile doll and I need a break, or whatever. But being more outspoken and being one’s own advocate is important.

Shubham Pant, M.D.: Doña, so how was it with you? Did somebody say, “Oh, we’ll do the dishes for you every day.”

Doña Harman: Oh, bring it. Yes.

Shubham Pant, M.D.: Or you’re like “Hey, I’ve got cancer. I can’t do the dishes.”

Doña Harman: I’ve got cancer.

Shubham Pant, M.D.: Sorry, can’t do the dishes and all the chores and everything. How is it in your household? Tell us a little about that.

Doña Harman: I had so much support and love around me. My family, I was fortunate, lived close by. And my mom pitched in. I didn’t have to worry about the house. My daughter organized the meal train for me, so throughout chemotherapy there was food coming into the house. Even though if I wasn’t eating it, the household was taken care of.

Shubham Pant, M.D.: Was she asking for stuff she liked or you liked?

Doña Harman: I felt a lot of love and support around me such that even now, I’m recognizing all the kindnesses that were given to me.

Shubham Pant, M.D.: Dr. Eskander, what about you? When the patients come to you, do you talk to them about this, about the emotional, psychological support that they would need? Family, friends—how did they deal with it?

Ramez N. Eskander, M.D.: I think it’s important to have support. It’s very difficult to go through this process alone. I think that’s part of our responsibility: to make sure patients don’t do that, so we can use the resources we have if they are alone. Family is priceless and friends are priceless, and now they can support a patient and give them the resources to help get them through the process. Patients will frequently ask, “Is it OK for my family member to come in the room? Is it OK for them to be on the phone?” I say, “Absolutely.” I love when the family is involved, because then I know that there are resources available to the patient. Of course, sometimes it doesn’t work that way, and families can complicate the picture. But for the most part, having family or a support system in place is really beneficial.

I do agree there’s a lot of information out there. A lot of is not necessarily accurate information. Sometimes patients come in overwhelmed: “Can I eat this? Can I not eat that? If I drink this, is it going to make my cancer come back? I spent all this money on this particular supplement.” And it’s hard to know how to truly reassure those patients and at the same time tell them that we don’t really have much data at all about any of these things.

Shubham Pant, M.D.: Right.

Jeremy Hirst, M.D.: But it can be very stressful. We’re in an era where information is everywhere, but really being able to distill the accurate information is difficult for all of us. I try to help them navigate that as best I can, but obviously even my understanding about some of these supplements is very limited.

Shubham Pant, M.D.: Yes, I hear a new one every day. “This is from Bhutan, this came from the Amazon, jungle fruit.” That’s strange, but one of the things patients sometimes don’t recognize is that supplements while you’re undergoing therapy can actually cause some harm, because they can interact with some of the medicine. Can you tell us a little more about that?

Ramez N. Eskander, M.D.: Oh, it’s absolutely true, and it can be overwhelming because they can be on five or six, seven different things, and I don’t know what the interaction was, what they’re taking with the drugs that we’re giving. Many of the oral agents that we give, including PARP inhibitors, can have interactions based on metabolism. I try to have them bring it into the office if they can, so I can learn a little about what the implications may be. I use our pharmacists, who are very useful, and say, “Can you please review some of these supplements to make sure that there are no interactions?” If I don’t think there are good data, I encourage them to try to avoid the supplements while they’re on treatment if they’re willing to do so, until we get them through therapy, and then we can revisit.

Shubham Pant, M.D.: That’s wonderful.

Transcript Edited for Clarity