Woman to Woman Mentor Program

Tami: You're on an emotional roller coaster because you're faced with mortality. As you're going through chemo, you don't know what to expect as far as side effects and the emotional trauma of just dealing with having the cancer.

Sheila: I was 72 when I was diagnosed and I'm like, well, wait a minute. I did all the things I was supposed to do. It didn't hit me until I got home. And I went through several emotions at one time: anger, sadness. After that, I just submitted myself and said, okay, I've got a great gynecologist, oncologist. She's excellent. Gave me lots of hope. And I finally just said, okay, let's get on this journey, girl. Let's do it. When I started feeling better and had my surgery and I saw so many people at the Cancer Center, at that point is when I realized somebody needs to be there for people like me. I was the happiest person when I was called and told that I had a mentee.

Tami: Very rarely do we meet someone that you just instantly click with.

Sheila: I just talked to her like she was my best friend forever. I'd known her forever.

Tami: She just really helped me get through the chemo in the respect that you don't know what to expect as a patient, what the chemo drugs are going to do as far as side effects.

Sheila: With cancer, with all these different emotions that you're going through, it makes you feel like it's over. I'm not going to make it. But if you've got somebody there to say, hey, I did that too. I went through the same things that you're going through.

Tami: It makes you realize that you're not alone and that she beat it. So you can too.

Sheila: I beat it. You can beat it. Don't give up. Stay positive. Even if you feel weak and tired, get up out of bed, move around for five or 10 minutes.

Tami: I know that she's always going to be there, and I can pick up the phone at any point in time and I can call her.

Sheila: It was one of the greatest moments of my life to be assigned another human, to try to walk her through a situation that no one knows how you're going to come out of.

Tami: I think she's a friend for life, and I couldn't have done it without her. And I'm glad I didn't have to.

Speaker 1: Welcome to Bench To Bedside, a weekly series of live conversations about recent advances in cancer from the research bench to treatment at the patient's bedside. And now, your host and the director of the University of Kansas Cancer Center, Dr. Roy Jensen.

Dr. Roy Jensen: Connecting women who are newly diagnosed with gynecologic cancer with survivor mentors is the aim of a new program at The University of Kansas Cancer Center. The program called Woman to Woman pairs gynecologic cancer patients with trained volunteer mentors who have gone through cancer themselves. From the moment of diagnosis through the end of treatment, mentors provide one-on-one emotional support to help women and their families cope with the diagnosis. The Cancer Center is one of more than 40 Woman to Woman programs nationwide. The programs are sponsored by the Ovarian Cancer Research Alliance, the largest charity in the world fighting ovarian cancer and supporting women's health.

Ovarian cancer ranks fifth in cancer deaths among women accounting for more deaths than any other cancer of the female reproductive system. We have three guests today with me to talk about the program. And here in the studio is gynecologic oncologist and palliative medicine specialist, Dr. Lori Spoozak with The University of Kansas Cancer Center. Uterine cancer survivor, and Woman to Woman mentor Sheila Chandler of Kansas City, Kansas. And ovarian cancer survivor and Woman to Woman mentee, Tami Henry of Overland Park. They're both here via Skype. So thanks for joining us for today's episode of Bench To Bedside. Dr. Spoozak, I'm going to start with you. Tell us a little bit about the Woman to Woman program and how did you learn about it and bring it to KU?

Dr. Lori Spoozak: Thanks so much for having us, first of all, and I'm so excited to have our guests join us as well, who are participants in this incredible program. I trained in New York city where this program actually started. At Mount Sinai hospital is where the program initially began, but it was where I was training at Columbia, where they first brought it in during my residency. And I learned about all of the incredible benefits of this program, which offers peer to peer mentoring. So a woman who has gone through treatment for any type of gynecologic cancer, an ovarian cancer, uterine, cervix, it doesn't matter, is paired with someone who is either at the first part of their treatment. Their initial chemotherapy, their initial radiation or surgery, or at a time when they're having a new development in their cancer.

For example, if they're having a recurrence and they need an extra layer of support. And so I was really wanting to bring this program to KU since starting. And it just took a little while for us to gather all the data and the people that we needed to be on board, finding our program coordinators and things like that. And we were able to make it happen in the last year.

Dr. Roy Jensen: Why do you think it's particularly important to bring this program to the KU Cancer Center?

Dr. Lori Spoozak: That's a great question because there's so many different support programs out there. Well, what is really unique is that we're able to train peer mentors. And so this is something that is not provided by all of these other types of support systems. In this program, we are enabling our patients to get information about their cancer from the authentic source, because even though we do our best as healthcare providers to educate patients about what it might be like to go through chemotherapy or radiation, there's nothing like hearing about that experience and how it felt and what it was like for the first time, to get a port placed or to walk through your first chemo cycle from the authentic source. From that person who's gone through that before.

I have not gone through that before. And so I can't say what it's like to lose my hair, for example, and how did I cope with that? And that's the unique part of what this program offers to our women. The other thing is that there's tons of research out there that says that this is highly valued for psychosocial support for helping women actually get through all of their cycles of treatment. And so there's the emotional, there's the interpersonal aspect of the program that's essential, but then there's also research that supports the vast benefits of the program.

Dr. Roy Jensen: So Sheila, thanks so much for being on the program today. Can you share your story and why you decided to train and serve as a Woman to Woman mentor?

Sheila Chandler: Absolutely. My journey with cancer, that word is just amazing, how it can make you feel. It starts a roller coaster in your body emotion wise, spiritual wise. You begin to doubt who you are, what you did wrong, but I was a person that was always doing what I was supposed to do. I had my pap test done every year, according to the timeframe. And when I was diagnosed at 72 years old, that in and of itself, it just totally took me back because I'm like, wait a minute, wait a minute, what have I done wrong? So going through the process of having a complete hysterectomy at 72 years old was very, very devastating, but I kind of just got into the mode of having such a great doctor and my spiritual existence had gotten low.

And so I had to start talking to God or whomever, but it got to the point where there was nobody I could talk to about it other than my oncologist and her nurses. And they were so kind and so loving and so positive about my situation. They guaranteed, Sheila, you're going to be fine, you're going to be fine. Well, none of them had gone through what I was going through. So Dr. Spoozak I said, if you've never walked in my shoes, how can you actually attest to what's going to happen to you? So I went through it basically by myself with a lot of people saying you're strong. You're going to be fine. You'll be great. Don't worry about it. But that wasn't good enough. I needed someone that had been through what I was going through to help me to realize that the little twinges that I have from time to time are normal, it's okay.

If I needed to talk to someone about in the middle of the night about, oh my God, I can't sleep. I keep having bad dreams. I keep thinking I'm going to die. I had nobody to talk to. I have relatives, don't get me wrong, and they were kind. They were supportive in as much as you're strong, you're going to continue, you've always been the strongest one in the family, blah, blah. That didn't help. But needless to say, after my chemo, when I started my chemotherapy, I knew that my doctor had told me, Dr. Chapman told me, oh, Sheila, you're going to be fine, but here's the deal you may be nauseous. I had nausea. I had pills for nausea. I had pills for pain. I had pills for everything. So when I had my first chemo, I walked out of there the third day, I was great, except my body ached a lot. I never had any nausea. I never had the things that other people had.

So the last two, I had six sessions of chemo, six. So I was pretty blessed in as much as some others that had to have 12 or more. So my thing was when I did ring the bell, I'm cancer-free, I'm doing great, I made a promise that if I could help somebody else through this, I would. And I told my oncologist and her two nurses that I wanted to volunteer to sit in the waiting rooms with people that were going through this cancer thing and just be there for them and talk to them if they wanted to talk to me that I talk with them. But when this particular program came along and Lori, one of the nurses said, Sheila, I put your name in, is it okay?

I'm like, What? Yes, I'll do it. I'll do it. I could not wait to get my training. And since then, my mentee, my first mentee, I love her dearly. She is so special to me because she could ask me anything, and I just opened myself up to her in that manner to where don't feel bad. Whatever it is, if I don't have an answer for it, talk to your doctor, talk to your oncologist, talk to your gynecologist. Whoever you see, that's what you need to do. But pretty much we hit it off to the point of where she got fine. She was a worry wart. A little bit more worried than I was, but she was a worrywart. And we've kind of toned that down a bit. So it's good to have someone to talk to that has walked in your shoes. It really is.

Dr. Roy Jensen: Absolutely. And that's that's a great story, Sheila. Tami, it sounds like you have a great resource there in in your journey. Could you share with us why you became involved in Woman to Woman and how you think that the program really benefits patients like yourself?

Tami Henry: Well, like Sheila said, when you're first diagnosed, I met Dr. Spoozak on the 20th of January a year ago, and it sets you off on an emotional roller coaster. And it's like, I was 58 at the time, and I just felt like my experience with cancer, my mother died from breast cancer in 2006, so I had always expected if I was going to get any type of cancer, that would be the kind. And in the back of your mind, ovarian cancer is that silent one that they don't catch early. And I just always in the back of my mind had a fear. And then to have it diagnosed, you automatically think you're on a death sentence. And Dr. Spoozak kept saying, stay off the internet, and I finally listened to her.

And then as we were getting ready to start the chemo, her nurse, Sarah, emailed me and said, we have this Woman to Woman program, and would you like to be involved and have a mentor? And in a cancer experience, you really find out your friends are there for you. I'm single. I live by myself. So I relied a lot on my friend network and they were there for me. So I kind of approached the Woman to Woman with, well, it can't hurt. my only experience was with breast cancer and with my mom. And so they assigned me to Sheila and my first treatment was March 25th. And I think we may have texted a day or two before that. And so my treatment was on a Wednesday and by Friday, I'm having the body aches and I'm calling Shelia saying, is this normal? And I think the way the program benefits patients is it gives them that support of someone.

Sheila had gone through the exact same drug regimen as far as the chemo treatments, and so she knew what to expect and she could tell me, okay, this is normal. And Ms. type A personality that I am, I would soldier through the side effects after the treatments. And then she and I would talk, and she'd say, call your doctor because I'm just independent and I just get through it. But I did learn from her, you got to call the doctor, they've got a pill for every side effect. And really I think it benefits patients both not only mentally and emotionally, but just knowing that someone's there that has been through this and bolster your confidence and tell you you're going to get through this. Because Shelia consistently would say, call your doctor, you're a strong person, and you're going to get through it. And it always bothered me when Sheila would talk about how she went through it alone without having that support network. And if we could go back and change it, I'd want her to have that support that I had from her.

Dr. Roy Jensen: So how would you say that having the availability of Sheila really changed your cancer experience for the better?

Tami Henry: Just having her there to talk to and tell me the body aches are normal, you're a strong person. And she and I just clicked. I mean, and if you're going to have cancer and have to stay at home, what a better time to do it then COVID when everybody else was staying home. But she just was there to tell me don't be so stubborn and independent. And we'd spend, even now once a week at least, we spend over an hour or more on the phone yapping at each other. And just having her there and knowing she had gone through it, I knew she knew how I was feeling. And so again, the emotional support was invaluable as well as just telling me what I needed to do.

Dr. Roy Jensen: Well, I suspect she was a tremendous resource. If you're just joining us, we're here with gynecologic oncologist and palliative medicine specialist, Dr. Lori Spoozak, and program participants, Sheila Chandler, and Tami Henry to talk about Woman to Woman and why it's important. If you have any questions, please post them in the comments below. And remember to share this link with people who may benefit from our discussion. Use the hashtag Bench To Bedside. So turning back to you, Dr. Spoozak. You treat patients really throughout the state of Kansas and the Western part of Missouri. How would you say that they benefit from this program?

Dr. Lori Spoozak: The incredible thing about COVID-19 is that it has shifted most of our programs and visits to some type of virtual technology. When we did our initial training for Woman to Woman, the training is based on a in-person connection. What has happened, and what quickly happened was when we were first starting our matches, all of our matches were actually starting to shift to this whole virtual framework. And so, in fact, it didn't really matter where you were from. We could match mentors and mentees to connect with each other virtually via video conferencing, texting, emailing. Some of them even sort of became Facebook buddies and what different mentors and mentees needed from each other sort of became independent and individualized.

And so we're able to actually access and offer these types of connections, not only across Kansas and Missouri, but also a Woman to Woman has a national database that if you can't find someone who exactly meets your needs where you are, there's an email blast sent out to all of the program coordinators, so that you might hook up with someone who is in Alaska, for example, and offer virtual mentoring. And so COVID-19 has been sort of this blessing and curse in that people have become really acclimated and facile with digital technologies. And actually that's going to be a new part of our training for this year coming up for a new mentors, is going to be how to get them online and how to figure out how to create better virtual mentorship relationships. So, yeah.

Dr. Roy Jensen: Okay. So I suspect that there's not a lot of Sheilas out there who volunteer for a program like this without even knowing that it exists. But for those of the women out there who are just hearing about this program, how do they volunteer? How do they get involved? Is there a training aspect of this, and what does that look?

Dr. Lori Spoozak: So we have two amazing program coordinators. Malia Opat is our social worker for women's cancer at the Cancer Center, and Sarah Klaus is one of our clinical nurse coordinators. And they are both the program coordinators. And they provide a training day. This time, it will be virtual. The last time it happened, it was in person. But it's an entire day that teaches our mentors techniques for how to communicate, how to have boundaries, what are safe ways of communicating, things like that. What is the knowledge that you should share versus referring someone to their physician? And it coaches our mentors and how to do that. And also how to not be shy to ask for help from our program coordinators. And so we are going to be having another training coming up.

And what is always surprising to me, while Sheila is a unique mentor in her incredible skills for reaching out and connecting, we have over 10 people who have volunteered already. And a number of them are those who were mentees. In fact, I believe Tami is going to be one of our new mentors. And so I believe that this program will sort of succeed itself in that once you've seen the benefits of mentorship that you will sort of naturally want to become a mentor as well.

Dr. Roy Jensen: Right. So Sheila, how would you describe your volunteer role to a woman who wants to become a potential mentor in this program?

Sheila Chandler: Well, for me, I have three things that I touch on, and it's dedication, honesty, and availability. When I say dedication, I mean, you really want to do this from the bottom of your heart. It's a spiritual feeling that you have to give back. You want to do it. When I say honesty, I mean when you're talking with your mentee, no matter what it is, be honest, be upfront, stay as positive as you possibly can, and just keep a spirit going where your mentee doesn't have to hang up the phone or not text anymore, or hang up the phone and not call back, or be alone and not leave the phone without a smile on their face. And I can usually tell when someone's smiling, because I used to work in phone customer service. So you can tell when a person is smiling over the phone, you actually can.

And I believe in being honest about things. And so that helps a lot,, positivity honesty. And the third thing availability. I pride myself on, hey, I tell my mentee, anytime you need to call me, call me. I don't care if it's night, day, wee hours in the morning, I will answer my phone. I promise you that. That is my promise to my mentee. Don't ever feel like, oh my God, I'm up at two o'clock in the morning, and I need to talk to somebody. I am that somebody, because I believe in what I'm doing, and I trust that somebody... I can't imagine a mentee not getting something out of it, but I just want to see a person stay positive and focused on themselves and really get what you're supposed to get out of life. Negativity has no place in this program. So if you have an ounce of negativity, it's not for you as a mentor.

Dr. Roy Jensen: Well, I think our audience is pretty clear on why you're such a great mentor there, Sheila.

Sheila Chandler: Thank you.

Dr. Roy Jensen: So Dr. Spoozak, what would you like to see the Woman to Woman program achieve over this next year as we kind of climb out of COVID hopefully?

Dr. Lori Spoozak: Hopefully. Well, I think that what we've learned is how important virtual resources are. And so we actually got a renewal on a portion of our funds from the grant to make electronic media. And so we've been working with the Cancer Center marketing team to create a web page on the Cancer Center website, for Woman to Woman. We are going to start creating videos that will be available to women anywhere about topics like what it's like to get your first chemo, what it's like to lose your hair, what it's like to undergo surgery, things like that. We are also working on podcasts about living well with cancer. And so these are the types of things that we'd like to achieve this year. Additionally, fundraising. So we had initially grant funds, and now we need to be a sustaining program. And so we're working with the woman's cancer advisory council to try and start brainstorming some ways to raise money to keep this program in business.

Dr. Roy Jensen: So I'm curious, do similar programs exist for other types of cancer?

Dr. Lori Spoozak: So in the literature they do, and most of the time it's for breast cancer. I would say that's where a lot of money is for a women's cancer. And with that said, though, the model of peer to peer mentoring can be applied to any cancer. It's really about having the resources at the institution to make that happen.

Dr. Roy Jensen: So Dr. Spoozak, what would you say are kind of some of the key takeaways you'd like our viewers to remember from our discussion today? Other than the sparkling personalities of Tami and Sheila.

Dr. Lori Spoozak: I think that they're an incredible example of how important this program was, especially during COVID-19. What we learned from our patients in research that we did with our program matches is that it was extremely difficult and still is extremely difficult to access support resources. Not only are people alone, they're also on quarantine, they're isolated. But also it was difficult to coordinate and figure out what was still available, even online for support resources. So this program was incredibly important during COVID 19 and the things that we've learned from our participants. We should really pivot to enabling most people who enter our Cancer Center, some access to technology, whether that looks like having video conferencing in every treatment room, infusion unit. Whether that means social workers start investigating whether a patient has wifi access, things like that.

I think also through this program, enabling mentors and mentees to have access to technologies like a video conferencing app. So it's really sort of we've learned to shift our focus and figure out how important it is to enable our patients to get this information. We have MyChart, and we can offer support bundles with every patient encounter so that they know about all of these program resources through their end of visit MyChart notes. We just have to sort of get better at figuring out how to use virtual technology, because there's a lot of things that are there, and now we need to really double down on our efforts to allow all patients to have access to them.

Dr. Roy Jensen: What if say you participate in this program and you're not lucky enough to get somebody like Sheila that you just really click with. Is there an opportunity to kind of reconfigure there?

Dr. Lori Spoozak: You may either reconfigure and find a different mentor, but also what we found is that not everyone needs intensive sort of once a week phone calls. For some women, it was adequate, and in fact, they felt like they were being supported in the way that Tami shared that someone was there just knowing via text that someone was available to communicate with. And they would shoot their mentor a text during treatment like, this is happening, what's going on? What do you think about that? So everyone has a different level of mentorship that they need and all of that is okay. And what was surprising to find an in our research was that actually one size doesn't fit all, and it's going to be part of also our new mentee questionnaires. How do you want to communicate? How much communication do you want? Are you looking for more sort of sciency support in the sense of what is chemo like, what are the details of chemo? Or are you looking for more emotional support, social support? So trying to tailor that mentor mentee experience is how we're going to work on improving the program going forward.

Dr. Roy Jensen: So Sheila, what key takeaways would you like our viewers to remember from our discussion today?

Sheila Chandler: This program was much needed. And if at any time they feel alone spiritually, mentally, whatever, this would be the program to seek out and actually take part in.

Dr. Roy Jensen: Great. And Tami, I'm going to let you have the last word. What are your final thoughts?

Tami Henry: Well, I think that you have to go into the program with an open mind. I had not dealt with anything but breast cancer with my mom and my thought was, well, we'll see what happens. If it's too intrusive, I can back off, but going into it with an open mind and just being honest with your mentor, what you're feeling and going through, and you make it the experience that it is. I got so lucky getting Sheila as my mentor, because I could not have gotten through it without her. And we've never met. I think this may be the second time, we may have FaceTimed once. But to me, she's a beautiful person, and she's a friend for life. And again, you make it what it is, and it's there for the support, and it's invaluable to me.

Dr. Roy Jensen: So I'm going to ask you, what's the first thing you're going to tell your mentee when you get hooked up with a newly diagnosed patient?

Tami Henry: The first things Sheila said to me is you will get through this.

Dr. Roy Jensen: Well, thank you, Dr. Spoozak, and Sheila and Tami. That's it for today. To learn more about today's discussion, please visit KUCancerCenter.org/womenscancer. Join us next time for Bench To Bedside. Thanks for watching.