RACHEL MARTIN, host:
The American Cancer Society believes that doctors will diagnose more than 1,400,000 new cases of cancer this year. That's in addition to the estimated 10.8-million Americans already living with a history of cancer.
ALISON STEWART, host:
But as the number of new cases continues to grow, so does the number of treatments, leaving today's patients trying to navigate a maze of options during what can be an incredibly emotional time. With so many choices and so much new information, many new cancer patients report feeling confused and overwhelmed.
So now advocacy groups and hospitals have come up with a way to help: cancer coaches, trained volunteers, or in some cases, professionals who can advocate on the patient's behalf. Meg Gaines is a lawyer and ovarian cancer survivor who runs the Center for Patient Partnerships at the University of Wisconsin, Madison, where she helps train cancer coaches. Hi, Meg.
Ms. MEG GAINES (Director, Center for Patient Partnerships): Hi, there.
STEWART: Thanks for being with us this morning.
Ms. GAINES: My pleasure.
STEWART: Did you have a coach or any kind of trained advocate when you were going through your own battle with cancer?
Ms. GAINES: No, and I think it led partly to my idea for the center.
STEWART: What was so challenging? What did you see as the most challenging parts of that that could be serviced by someone like a professional or a volunteer advocate?
Ms. GAINES: Well, for me it was getting a basic understanding of cancer and sort of coping with the shock of being diagnosed, and then with the onslaught of information about the disease and about treatment options and making choices when I had no training whatsoever in medicine or science or anything like that.
So that was it for me, and I think in addition, for many patients today, and also it was somewhat true for me, navigating the financial consequences of getting sick.
STEWART: And as people who have family members or friends who have gone through this know that there's so much information, and it can be overwhelming, are there not people in the hospitals who are associated with the oncologists or the doctors who are treating you who help you navigate through these things?
Ms. GAINES: Hospitals - people who work in hospitals, it's pretty trimmed. I mean, the labor force is pretty trimmed. It's very much of a sort of a financial equation based upon what insurance companies will reimburse and pay for. So it's difficult. I mean, in some cases, some cancer centers have educators or nurse practitioners and even some oncologists who do, in fact, spend the time that it takes. But it's increasingly rare and difficult to get, and also it takes a long time.
I mean, if you go in and have an appointment, even if you spend an hour, it takes time to absorb. You have follow-up questions, and that's not how the sort of health care system is structured, to be able to sort of pick up the phone and say I thought of two more questions. Can I ask them now?
STEWART: So how do you go about training students and volunteers who work at your center? What characteristic traits make a good cancer advocate or coach, as well?
Ms. GAINES: I think the ability to listen, first and foremost, and to hear what a person is saying, give them the time to say it, and then - which is sort of preciously rare in the health-care equation - and then to help people organize their information. Sometimes it's to help people calm down enough to take in information, to help people identify ways they've been successful in making difficult and cumbersome or detailed decisions before and to kind of re-orient them.
It's a bit like being a guide in a foreign country and having someone kind of drop in who doesn't speak the language and doesn't know anything about the culture and the traditions of the place. I think you need to kind of look quickly at what the person's going to need that they don't have and try to help them see that and help guide them to get it.
STEWART: How is that support different than what cancer patients or survivors get going to a support group?
Ms. GAINES: Well, it depends. Support groups vary. Some support groups are quite sophisticated and have access to professional guidance and would approach this - would be very similar in kind of the provision of care or services in this way to this.
Other support groups are very much kind of places to go and download the emotional experience and get support, you know, basic emotional and psycho-social support, and while that's a component of what we seek to help patients get, it is not our only focus or our primary focus.
STEWART: My - a personal note - my mom has been suffering from kidney cancer for a while now, four-and-a-half years, and the hardest thing has been for our family to keep up on the research and what university is doing what clinical trial. What kinds of things - how can you train someone to stay informed? Do they - I imagine your volunteers have a huge Rolodex of doctors who are doing X research and others who are doing Y and have to keep track of all of this. Is that difficult?
Ms. GAINES: In some ways. I think it depends. You know, cancer coaches vary, and especially volunteers vary, so people who, for instance, have been through kidney cancer or have had a family member go through it - I mean you, I'm sure, are getting - are pretty up to date on what's happening in research in kidney cancer, and so if you decide…
STEWART: Not as much as I'd like to be, because it's such a full-time job, really.
Ms. GAINES: Well, that's - there's truth to that, although sometimes it's not full-time enough because sometimes there aren't enough options, you know, that are viable for your particular family member. But I think that there are some really good Internet resources that help you keep up on basic research, on standard research.
The harder thing, I think, is to find - is to get access to those sort of early-phase trials, which are mostly about toxicity of drugs or interventions but which can also show promise. The more difficult thing is to figure out how to get access to that information. That's tricky.
STEWART: Also, as a survivor yourself, have you found yourself in a situation where you ended up projecting your own experiences or expectations on your patients who may have completely different priorities for their life or their treatment?
Ms. GAINES: I think that's the trick about listening. I think not, because - I mean, I think that's sort of a liability of early advocacy. I think once you do it for a while and have experienced doing it and you realize that what your goal is is to help the patient sort of feel more confident and better about what's happening for them, your own experience becomes relevant to the extent that it's helpful, but irrelevant to the extent that it's not helpful.
STEWART: Is there a patient's story in particular that you remember who you have made a difference for as an advocate?
Ms. GAINES: I think - oh, gosh, there's so many. I think, you know, we often get such warm and powerful expressions of gratitude with people. I think - I guess what I would say overall is the feeling - well, I'll tell you the story of a friend of mine who died two and a half weeks ago of breast cancer.
And we spent the last couple weeks at hospice with her, and she said to me, you know, about a week before she died - she sort of looked at me and said do you think I could? And I said no, there's nothing more you could've done. You did everything you could do. And she said - she just looked at me, and she said thank you so much.
And I think that, you know, not everyone can live. I mean, cancer's a horrific disease. Although the bulk of people survive, more than 50 percent of people diagnosed do survive more than five years, but not everyone does. And it's important whether you find that magic treatment that helps you survive or whether you die of your cancer. It's important to feel like you've done everything you can do, and I think that's - for me that was the most-recent very gratifying feeling.
STEWART: Meg Gaines is an ovarian cancer survivor who runs the Center for Patient Partnerships, an advocacy resource at the University of Wisconsin, Madison. Hey, thanks very much, Meg.
Ms. GAINES: My pleasure.
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