A Network of Support for Patients With Ovarian Cancer
A breakdown of the support networks patients can build and rely on as they receive treatment for ovarian cancer.
PUBLISHED October 18, 2019
Shubham Pant, M.D.: Doña, I know you had a lot of support going through cancer care. There were friends and family, but did you seek out other support groups, other survivors who you wanted to talk to? Did you ever do that during your therapy?
Doña Harman: No, but the additional support I really garnered from the team: the clinical trial nurse, the infusion nurses, the nurse navigator. They really provided a lot of support while I was going through it. And they’d call me back in for rehydration the next day. I’d be going back and forth. I just felt that in a terrible situation, I was in a very wonderful space and that I was lucky. I was lucky to have access to great care and people who were passionate about what they were doing, and I felt they really cared about me and made time for me and listened to me. So I didn’t feel the need to go out. And again, I was private about it.
Shubham Pant, M.D.: Right.
Doña Harman: I had a gal call me, and she was five years out of ovarian cancer. And I was like, “Well, lucky you. I don’t really want to hear from you right now.” That wasn’t nice, but I’m not in that state. I hope I get to be on your journey. But it’s lonely. We’re altogether alone as we go through cancer. I like to think of it that way.
You have all this support, and you just put your head down. And that’s what I would say to patients. If I could talk to myself back at the beginning, it would be, “Try to limit the worry and put your head down, do the work, trust your team. The science has been done.” I got smaller. I just did things. I love to needlepoint. I like to knit. And those were meditative because they’re small, repetitive movements. And I think that kind of stuff helped my family and me.
Shubham Pant, M.D.: Dr. Eskander, do you recommend doing exactly as Doña was saying? That she liked knitting, and that when it came to her health, she could take her mind off things. Are those some of the things patients can do?
Jeremy Hirst, M.D.: Absolutely. There are things that had been helpful in the past. Making sure you keep those up is important. Not thinking, “I’m too busy with cancer. I’m too busy with everything.” Putting away these tried-and-true coping mechanisms. I think her experience with the reaching out to support groups is quite common in that a lot of patients don’t like the idea of going to a support group and having to sit there and listen to everyone’s woes. But other patients find it extremely beneficial.
Really knowing if there is a group available in your area is important. Knowing yourself, is this something that might be helpful or not? For the folks where it is, they talk about it as if it’s a religious experience in a way of just hearing other people’s journeys and hearing other people’s strength and hope can be extremely therapeutic. That’s the one side. The other side I hear people like, “No, that’s not for me. I’m going to do it this other way.” And both are right.
Shubham Pant, M.D.: What about support groups? What do you see from your patients reaching out, do you tell your patients about them? What resources are available, or have you seen some patients ask you about them?
Ramez N. Eskander, M.D.: We do get queried about it. Regionally we have several support groups that are available for patients who are dealing with ovarian cancer. I echo both statements in that some patients really find it beneficial, and they feel like there’s an opportunity for them to share their feelings, particularly if they don’t have an immediate support group that’s available to them. Other patients don’t, and they explore these options and come back and say, this is not something I benefit from, it’s not for me.
I do caution them because there are a lot of support groups online, on Facebook and other social network sites, that have ovarian cancer support groups. But the cancers are very different. What people are writing about is extremely different. One patient may be reading about something that is on that website but completely unrelated to the cancer they have. It’s a bit of a difficult path to navigate, but I think the most important thing is whether it’s a reliable, reputable organization that’s been around for a long time, which there are plenty of. You can go to the American Cancer Society. You can go to the Society of Gynecology website. You can go to ASCO [American Society of Clinical Oncology] to find some of these resources that are available even regionally. And I think the most important thing is, if you’re going to do it, do it with a program that has a bit of a track record and a reputation, so you make sure that you’re getting good information.