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The Importance of Patient-to-Patient Mentorship

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Published on October 4, 2021

What Is Patient-to-Patient Mentorship?

Connecting with a peer who is an empathetic cancer survivor can be very valuable in developing and maintaining a positive, hopeful attitude throughout your journey. The exchange of experiences and gaining knowledge and reassurance from someone who has already “been there” can begin to answer many questions and perhaps allay fears that often come up while navigating a diagnosis. In this program, Patient Power co-founder and care partner Esther Schorr meets with patients/survivors Lou Lanza and Jim Strafford, a “mentor” and “mentee,” to discuss how they started their long-distance friendship.

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Transcript | The Importance of Patient-to-Patient Mentorship

Esther Schorr: Greetings everybody. This is Esther Schorr with Patient Power, and I want to welcome you to this discussion about the important role that connecting with a peer who's gone through a cancer journey can be in developing and maintaining a positive and hopeful attitude throughout your journey. The exchange of experiences and gaining knowledge and reassurance from someone who's already been there, can begin to answer many questions and perhaps allay some fears that nearly always come along with a cancer diagnosis. So, what I want to do is introduce two very special guests. Two wonderful gentlemen who have offered to share their peer-to-peer relationship with us. First, I want you to meet Lou Lonza. Lou, good to see you.

Lou Lanza: Good to see you.

Esther Schorr: Lou is the mentor in this pair. Lou is retired now but he's a very active patient advocate and mentor based in Philadelphia. Lou was diagnosed with large B-cell, stage IIA, non-Hodgkin lymphoma, and has been through treatment over the years and is now a very vibrant and active volunteer in many local, regional, and national support organizations. He's also a member of our patient advisory panel, which we are thrilled to have him. So, thanks for being here, Lou.

Lou Lanza: Thanks for having us.

Esther Schorr: Yeah, you're welcome, and Jim Strafford. Jim has his own consulting firm that works with physician practices, billing companies, and hospitals, and he's based in Brooklyn, New York. Jim was diagnosed in early 2021 with stage IV squamous cell carcinoma and is currently in treatment. He has immunotherapy every few weeks, and the good news is that his tumor has shrunk very significantly as of his last scan without any spread and he's active. And he tells me he feels well, and he's had minimal side effects from treatment. So that's the background I have, but really the story here is about the two of you. So, I want to start by asking you, Lou, how did you guys connect in the first place? One's in Philadelphia and the other one’s in New York.

How Did You Start Your Patient-to-Patient Mentorship Journey?

Lou Lanza: Well, I got a call. I email her a call from 4th Angel. It's a group I'm associated, like the group I'm associated with Jefferson, the buddy system, it's out of the Cleveland Clinic. Scott Hamilton started a group called the 4th Angel. Actually, I was on a visit to the Greater Cancer Support Group of Greater Philadelphia, and they had a little kiosk there, and I signed up with them and I said, well, you're in Cincinnati, I'm in... he goes "no, no, we'll do it all by email." Before COVID, you just did it by email or calling.

Esther Schorr: Mm-hmm (affirmative).

Lou Lanza: They set me up and I've had a few I've mentored, and recently I had the pleasure of talking to Jim here and that's how we connected. I got the name from the 4th Angel, it's called.

Esther Schorr: So the mentorship right now, of course with COVID is through Zoom, through some kind of an online. And is that program, I'm just curious does that program, would it convert to being in person when it's possible? Do you do that as well in Philadelphia when that's possible?

Lou Lanza: I've never had a… Because most of them, it's a national organization and I've never had a 4th Angel client or a mentoring mentee in person. Jefferson, we can do it in person, but usually it's done by email and calling. Calling mostly, just touching outreaching base, you know, whatever they need, 24/7. I was lucky enough to be saved and trying to give back just a little. I don't know if I'm doing any good, but I consider it an honor to help others going through what I went through.

Esther Schorr: Well, I'm going to guess, when we talked to Jim that you're doing a lot of good. So, Jim, let me ask you, why were you looking for a mentor connection to begin with? What was your thought about that?

Jim Strafford: Well, when I was first diagnosed, I was pretty anxious and depressed about the situation. And I started doing research about what's out there and there is a lot out there, in terms of cancer support, which is a good thing. I'm somebody who, I guess you'd say is a people person or whatever, and I found the 4th Angel, which I think I've been calling the Fifth Angel, I've added one angel.

Esther Schorr: That's a rock group, “A Fifth Angel,” be careful.

Lou Lanza: Yeah.

Jim Strafford: Yeah. And through them, through the person I spoke to, they connected me with Lou. Lou contacted me quickly after, within a week, and I would say we hit it off right away for a couple of reasons. One, I've spent half my life in the Philadelphia area, so I consider myself kind of bi-city, a little bit. And plus, just Lou's manner, his ability to calm me down when I was in a panicky state, all really helped.

In terms of the methodology, like Lou said, phoning or texting, since COVID had been going on for like a year by then, that's how people connect these days. So, it didn't seem that foreign to me to connect that way. The other thing Lou said, which just has been totally true, is he's available anytime. Some of the other organizations, I'm sure they're very good, but they're kind of by appointment and there's nothing wrong with that either. But the fact that, and Lou I'm sure remembers, I just called him in a panic once or twice and you know, he was there. So, that counted for a lot.

Esther Schorr: Yeah. So, Lou with that said, the kind of outreach and support that you offer through this kind of a mentorship program where you say you're basically available 24/7. If somebody were considering mentoring the way you are, what is the sort of criteria for evaluating whether this is right for you as a mentor, versus doing some other kind of support work?

Lou Lanza: Well, I also do, I guess I've had a lot of practice in this. I do another organization. Well, a lot of the organizations there, I'm with. With Jefferson, they have a buddy on the spot. So, I usually talk to people getting infused and everything. So, I'm not exactly a wall-fly right. I do have the [inaudible 00:07:26], I talk a lot. Gift of gab. Somebody said when I was born, I was vaccinated, but it was with a photograph deal. Somebody, to get into this, you have to be, you have to know where you're at.

You don't want to be a mentor and talk to somebody and say, oh, well, I had this and then when I had that, I was going through this and you know, nobody wants to hear that. I try to be upbeat. I try to be supportive. I try to let the people that I mentor steer the conversation. I have certain ways of finding out what they need and what they want, and sometimes I can ask a hard question or two, but I have to know the person can take it. I'm trying to help people. I don't want to diminish their attitude, and I never question their ability to talk to me or, or where they're at.

Esther Schorr: So, Jim then, from your perspective, what has been the benefit of the connection you have now with Lou? What have you gotten out of this mentoring relationship? How has it helped?

What Are the Benefits of Peer Mentorship?

Jim Strafford: Well, in a number of ways. One, just connecting with a good guy, that counts for a lot. Secondly, like Lou said, he comes at it in a positive way, but I'd also say a no-nonsense way, which I think is good. You know, it's a good thing, and I'd say specifically, Lou has a way of, I would call it 'reframing' the conversation a little bit. You know, one of the sayings that I remember that he said to me early on is I have cancer, but cancer doesn't have me. That was a very helpful kind of way of looking at it, and then when I told him about my treatment that I was getting, I had mixed feelings about the treatment, and I've read, this is kind of a guy thing. I don't know if it's true, but part of me wanted them to just go in, cut the thing out, do a bunch of radiation and so on, even though I had read in one of these sites that there's obvious risk with that, and people who get radiation around the head, they get all kinds of side effects.

So, Lou's attitude toward it was, "Hey, what you are getting is the state of the art, you're getting the most advanced treatment." Another thing I wasn't crazy about is I'm on a two-year protocol, and Lou said, "Hey, two years to a cancer patient is like good news." So, I would say, and he is a humorous guy too, and I've always believed, and I've read a couple of authors who believe in this stuff. I've always believed humor with any kind of illness is a real positive thing so.

Esther Schorr: Yeah. It's like, laughter is the best medicine. I think is, well, I don't know. What do we say? Knowledge is the best medicine. I think laughter is a very close second or first. I agree with you. No, that's helpful. So, I have one other question for you, Lou, because you've done a lot of this kind of mentoring. Does the mentor and the mentee having different kinds of cancer diagnosis really matter in the mentoring scenario? You know, just the fact that Jim has a different diagnosis than you do, does that matter?

Lou Lanza: Well, usually they try to hook this up with, we both had non-Hodgkin’s lymphoma, so that's sort of in the same ballpark kind of thing. Like I didn't, I didn't have pancreatic cancer or lung cancer or anything going like that. I mean, in the grand scheme of things, when I talk to people at the infusion center, I talk to people with all kinds of cancers. It doesn't matter. With the buddy system at Jefferson, and also with the 4th Angel, they specifically match people with like diagnosis or not exactly like, but similar. Like I said, they wouldn't, I wouldn't talk to a pancreatic cancer or breast cancer, because I don't know what they went through. I sort of knew what Jim was going to go through. We're sort in the same ballpark. We might not be in the same section, but we're the ballpark, and you know that at least we have a common denominator there and I'm where I guess hopefully Jim wants to be and he's getting there rather quickly, I think.

Jim Strafford: The only comment is, I think my cancer is a bit rare, so it was hard to find somebody who had exactly the same thing, which was a skin cancer that got into a lymph node. It was difficult, but that I had something in a lymph node, that it started somewhere else, I think, Lou understood that. That there was no like "What's that thing?" or any of that. I felt very comfortable. He understood what I was feeling.

Esther Schorr: Yeah, no, and that makes a lot of sense because as you said, Lou, somebody who's diagnosed with pancreatic cancer or breast cancer or lung cancer. They're different, generally a very different journey as far as treatment protocols and all of that. So, if somebody's looking for a mentoring relationship while it doesn't, it sounds like it doesn't have to be exactly the same diagnosis, but as you said, kind of in the same ballpark of what are the kinds of treatments that might be used and how long would they go on and that kind of thing. So that does make sense. So, I'll just start with you, Lou, where would you recommend patients, and I would say like, I'm a care partner, where would we look to find this kind of pairing? And I would say a care partner might want to have a mentor as well because they're along for the ride.

Lou Lanza: Usually when you go to a cancer center, they usually have some support system. I know like the 4th Angel is a national group. There's a few others, there's a bunch out there. Just look under support, cancer support, but I would try if somebody was looking for something, I would try to get them something disease specific or diagnosis specific. Because I said I really don't talk about treatments or anything like that with Jim or anybody else I talked to, but at least you know partly what the journey they're going to go through, and it's good to have the little background. Not that I have any medical background at all, but it's good to know that you were in a similar situation, and you made it to the other side.

Esther Schorr: Jim, you found Lou through one of those centers and one of those programs. Were there other places that you looked? I'm just curious, whether there were other programs you looked for.

Jim Strafford: Yes, I did a general search, so I think there's one called Project Hope.

Esther Schorr: Mm-hmm (affirmative).

Jim Strafford: There's one called Cancer Care.

Esther Schorr: Mm-hmm (affirmative).

Jim Strafford: And I was assigned a mentor, I think through Project Hope, who's a good guy, but again, it's much more of a talk by appointment kind of thing, and when you're in a panic state, you don't want to wait for that appointment. And Lou, I never called Lou at three in the morning, I did call him late when I got the good news of the scan, because I was euphoric.

There's another organization. I can't remember the name of it. It's kind of like a message board thing where people who have cancers go on and they did have head and neck, which of course that's where it's in, my head or neck. I have some mixed feelings about that because it was a lot of cancer patients sharing information, which I think is good in a way, but you know, they're throwing out have you heard of this alternative therapy? Have you heard of vitamin C infusions or something? And my only issue with that, it's just my thinking is, I think that kind of message board should have a physician monitor or something, but for some people I'm sure that's helpful.

Esther Schorr: Right, right. Yeah. And you know that's a whole other discussion, but you know in social media it's kind of a double-edged sword. There's on the good part, it’s what you guys have done is peer-to-peer discussion and support. On the other hand, it's a lot more difficult to separate out credible information from information that may not be as credible. So, it's great that the two of you connected the way that you did. It takes a very special kind of commitment that you're talking about from the mentor standpoint and for somebody like you, Jim, it's connecting with the person. So, you're really talking about developing a personal relationship and personal relationships have to be 24/7 or at least feel that the person's available to you. So that's what I'm hearing here that this is a very special kind of a connection, and it takes commitment on both sides. So, Jim, do you have any final words for people who are listening to this and maybe considering finding a mentor?

What Would You Say to Fellow Patients Who Are Considering Finding a Mentor?

Jim Strafford: Well, you know it's been great for me. I think especially early on, when a person first gets a diagnosis. It seems that having someone like Lou available, I mean family members, they're great. They're great. I have a girlfriend who's very understanding, thank. Well, she's a cancer survivor, so that helps for sure. And you know, with Lou, the relationship goes beyond just talking about cancer. Thank God. So, we'll commiserate about the Philadelphia teams, Philly's once again blowing it. Yep. It looks like, and having lived down there for 32 years, I have a lot of empathy for what Philadelphia fans go through. That's the other really good thing, that it goes beyond just talking about my anxiety and Lou dealing with that. And I think that's an important thing that you feel comfortable, chatting about other personal things.

Esther Schorr: Well, you two have a very special relationship and I really want to thank both of you for sharing your experiences and your insights and giving a little window into what's one configuration of getting support when you're a cancer patient and a cancer survivor. I don't think that, I don't know Jim, but I would think even after you're done with active treatment, you probably, I would think you now have a friend and that the journey doesn't end with the end of treatment. It's part of who you are, and having that relationship, I would think will be a wonderful addition to the rest of your life.

So thank you both, and for all of you that are listening, please remember that knowledge can be the very, very best medicine of all, along with laughter.

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