Advocating for Cancer Survivors: A Conversation with Tom Guntly

Podcast guest, Tom Guntly in the studio on recording day.

Advocating for Cancer Survivors: A Conversation with Tom Guntly

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Episode Transcript:

Elle Billman:

Welcome to Health After Cancer, a podcast for cancer survivors by cancer survivors. I'm Elle Billman and I'm your host today. In the studio, I'm joined by Natasha Steele and our guest on the show, Tom Guntly. Hi Tom.

Tom Guntly:

Hi.

Elle Billman:

Tom is a two-time cancer survivor. He works in the pharma industry and is an active volunteer at Stanford Medicine. When I first met Tom, I was so impressed by his advocacy. Tom is using his cancer experience to lead an advisory council, striving to use patient's voices to improve cancer care. An interesting fact about Tom and me is that we've actually been cancer survivors for roughly the same amount of time, although we've been survivors for about 20 years each. I have lots to learn from Tom, and I'm excited he is with us in the studio today. Tom, can you start us off and tell us about how you were diagnosed with cancer and when you were diagnosed with cancer?

Tom Guntly:

It really started when I had a two-week trip planned to Cancun with my family to go diving, and three weeks before I got sick, my primary care provided me some antibiotics, didn't really work, got a second course, felt better and went diving. I was determined. At the end of that two weeks, I was exhausted and so came back, saw my primary care physician, then they referred me to a hematologist and then I knew something was wrong. Sitting in the waiting room, my patient chart was on the counter, which was unusual, and I didn't have EMR back then, and I peaked in the chart and I'm familiar with reading charts, having been in research for many years, and I knew I had some form of cancer. The hematologist walked in and he saw me, saw the chart in my hand, and he freaked out as much as I did.

And I just said, "What kind of cancer do I have?" So it was very hard. It was very emotional. I had my wife with me and that was very supportive. I think I went through probably the same emotions that maybe other cancer survivors go through, which is, "Wow, am I going to die? Is there treatment? Will it hurt? Can I afford it?" So those were some of the initial feelings I had. I think the biggest thing was I had to give that news to my two stepsons. They had lost their father already when they were young, when my older son was two. My younger son was born the day after his dad died. And so here I am, I have to share this news with my two sons who had already experienced that. I had to tell them that it could potentially be O-and-2 and fathers here, and it was just difficult thing.

And I remember the night that we had dinner and we shared it with them and they were pretty quiet. They were processing everything and we digressed from the conversation. But at the end, they stood up from dinner and they said, "You know Tommy..." They would call me Tommy, "We're going to beat this thing. We're going to do it. We're going to do whatever your doctors tell you to do. You're going to take the medicine that they give you. We'll use paper towels. We'll peel your fruit. We're going to take care of this." And I was just blown away at that point where a six and a four-year-old are pulling their swords out leading the way, and I'm having a pity party. And I think at that point I said, "Okay, I can do this." And so it got better after that with some rough spots, but that's how it all started. And I remember that all vividly.

Elle Billman:

Yeah. Thank you so much for sharing that. In that story, you've touched on so many topics that we talk about in this podcast. You mentioned, "Can I afford the treatments I need for cancer?" We talk about that. We also talk a lot about parenting as a cancer survivor, so I'm excited to hear more about how that went for you and your sons.

Natasha Steele:

And Tom, can I ask, I think what you touched on at the end, this idea of disclosure is something that we all go through as cancer survivors. How do we tell our family members? How do we tell work? How do we tell our friends? How do we go through this again and again? Did you get any guidance or support either from your doctors or your care team around how to do this? I mean, there were six and four. What were the resources that you reached for?

Tom Guntly:

More than 20 years ago, there wasn't a lot of resources in that area. I think there was probably a healthcare provider that may have talked to me about life after treatment and people to call and perhaps other resources I could turn to, but I don't remember any of that. She probably talked to me and I looked right through her. So I would think that, and I know what of resources are available now, which is exponentially way more, but back then I probably don't even remember receiving any. And if I did, I don't know how I would've navigated that anyway so.

Natasha Steele:

So you've been a survivor for about 20 years, is that right?

Tom Guntly:

Yes.

Natasha Steele:

Can you help us understand, for those who might be like me, two or three years out, five years out, 10 years out, how did this change for you over time?

Tom Guntly:

In terms of survivorship?

Natasha Steele:

Yeah, in terms of how you were feeling, in terms of the issues that might've been live for you. In terms of navigating any difficulties around just anxiety or grief or all of the things that come with this experience.

Tom Guntly:

I think the first few years I just dismissed the illness that I had. It was in remission, and I went about my life just raising my family, taking care of my parents who were ill, working, just living a healthy lifestyle with my family as if in a bit of denial, except once a year, the week before I would have my annual hematology appointment and I wouldn't get much sleep until the appointment. And then we would have the appointment and they'd say, "Okay, you're good for another 5,000 miles until the next oil change." And then I would just go on.

So I think during that time, I really was on my own in a way, other than my family support. I don't really remember getting a lot of it from the institutions that were taking care of me at that time. I think the second half though, my perspective changed because my sons went away to college and they moved away. And I reflected more on who I was as a survivor and what I had dealt with in hyperdrive the first 10 years. And I felt like I wasn't fulfilling my life enough in terms of how I could turn that cancer into something positive. And so I started to reach out more to organizations, to people to help them embrace cancer. But in a way, I was reflecting on my own cancer by having that audience. And so I think it was really that second half of my time with this illness, that perspective came to me.

Natasha Steele:

What advice would you have for someone telling their kids at different ages and then if you had any resources at the time, it sounded like there wasn't a lot of perhaps research or educational materials or support going into that exact area of how do you communicate in a way that children will understand and not be traumatized by it?

Tom Guntly:

My two sons having already been through one loss in their life. They were more seasoned than I was. Incredible enough, and we didn't sanitize it at all, but we tried to make it palatable so they would understand. And that dialogue continued through my treatment with my sons to let them know and they'd see my blood results, and I would just involve them where they want it to be. And I could tell when they didn't want to be. So yeah, and we never ignored it. If it came up or if I was sick or had to got called or something, we definitely would just be transparent with them because I think that was the best way and then they could process it in their own way.

Natasha Steele:

And knowing you, Tom, I know that you had this initial diagnosis 20 years ago and then at some point a recurrence of your original disease. Is that right?

Tom Guntly:

Yes.

Natasha Steele:

Okay. Can you sort of share with our listeners what that was like? I mean, I think we all as cancer survivors fear that more than anything or secondary cancer, but can you just share how you navigated that?

Tom Guntly:

Strangely enough, I felt that my second treatment, I felt like I had A-team. I had lived through it. Having been in healthcare and research, pharma research, I did a lot of research. I did a lot of reading. I talked to other professionals. To me, I really educated myself on what my outcome would be with a second treatment. And so even before that time arrived, I had information and knowledge that was settling into me and had almost come to terms that I know I can beat this the second time as well.

So I went in really confident, not too confident, cautious, but I was confident and resources were available. Sometimes when you look at these things, it gets scary if you read too deep. So I didn't go too deep, but I read enough to know survival outcomes for secondary treatment for HCL. And so I already kind of just again set my pointers in the right direction. So when I went in there, I think I had a good attitude about it and I was going to beat it. And again, my sons were with me the whole way and my wife as well so.

Natasha Steele:

Did any of that surprise you? Was that not what you expected? Were you fearing something that felt very different when it actually happened, or did you feel equipped and when you got your second diagnosis say, all right, game on.

Tom Guntly:

I was all prepared and then when it came to that point where I needed to beret retreated, I fell apart. I had prepared myself and I had to just get back on my horse and go, "Okay, you're allowed to get bucked off the bull. That's cool."

Natasha Steele:

Yeah.

Tom Guntly:

So even though I felt like I was brave and I did all this research, which is I just a driver, I just get things done. I felt actually falling off that horse was a good thing. It grounded me, brought me back to reality, "Okay, this is where I'm at and I can read all the data in the world, but until I go through it, I won't know." So yeah, that was how it happened.

Elle Billman:

Were there any coping mechanisms or tools you used to get back on that horse?

Tom Guntly:

Music, I listened to a lot of music and I'm very active in the outdoors with a lot of solitary sports in terms of road riding and kayaking and a few other things. So I really turned to those activities from a physical standpoint. Then I'm really engaged with my church and started doing a lot of self-meditation, getting better every day. It's not easy. So I think the spiritual and religious engagement was huge for me. And then the physical side, I needed just to air it out as well. So I think those were the two coping mechanisms, but every day I had my family next to me, so that was my charging station so I could get out and do these other things.

Elle Billman:

Tom, you mentioned that about 20 years into your survivorship, you got more involved in being an advocate. Can you tell us more about what you've done as an advocate and what you've got involved in?

Tom Guntly:

Professionally, I've extended that reach doing research in oncology. I have access to different forums and symposiums and focus groups that I engaged in, not only just doing research, but how do I take it another step. So I've had that resource to me, but I needed more fulfillment of my disease and how I could bring that to others. And then I was introduced to the patient and family advisory councils at Stanford PFACs. I had no idea what it was, what it meant, "What is this thing?"

My sister works at Stanford and it introduced me to a woman that ran these 12 or so PFACs, these many think tanks. And so I joined one of them, the founding PFAC, which kind of covers many areas, but there was a vacancy as a chairperson for the cancer PFAC, and I was asked to join and I did, and it's been a wonderful experience as a patient, as a caregiver, as a family to partner with Stanford to really enrich this patient experience from diagnosis to end of life, to be able to be involved in that, to engage with the institution to make a difference was fantastic.

It was such a great outreach, like worthy end users. So allow us an opportunity to pressure test and kind of give you an idea of what they're doing. So that has been the greatest outreach that I've done thus far. Besides other national and local outlets, I think Stanford has been the main vehicle and all the things that have come out of that in terms of meeting other survivors, just meeting healthcare workers, community outreach people, my network of family, friends, and they're all family. It's incredible what it's done. It's been extremely rewarding.

Natasha Steele:

I love what I'm hearing you say, Tom, because as a physician myself, for hundreds of years, we've practiced medicine as this top-down care delivery model where unquote doctors know best and the way we take care of our patients and their families is sort of however we decide to. And the fact that you're part of this council that really elevates patient voices and patient experiences and factors them into the very way that we design the healthcare system that we have here at Stanford is just super cool and innovative. And I really encourage survivors who are looking for ways to use their experience for good. I think one thing I didn't realize was how valuable just having been a patient was in informing change. Just going through it's an actual line on my CV. You have amassed a wealth of hard-earned wisdom that we as doctors need to hear and need to think about when we're caring for cancer survivors. So thank you and thank you to the council for just making sure that voice is really central to what we do.

Elle Billman:

Given your time on the council and then also the research that you've done in cancer, I'm curious to hear if you have any ideas on how cancer centers could provide better care for cancer survivors.

Tom Guntly:

I guess to take it another step further, in terms of the PFACs involvement and there's PFACs in many institutions. Their interface with the clinics, I think that probably needs to be strengthened a little bit more than an ad hoc member. I think having a PFAC member sit, albeit their volunteers within a work group or a team that is developing a program from maybe beginning to end. I think it provides more value than coming in at the end and just pressure testing it. Sure, at that point you could tighten a few screws and at a rearview mirror, but at that point it's kind of baked in. So I think involving PFAC members or survivors in whatever capacity early on in these initiatives, I think would have more of an impact on the kind of end product.

Natasha Steele:

Have there been times from your own story, from memories of your diagnosis, your second diagnosis or the way you were getting information? I mean, you talked about seeing your initial diagnosis in a chart sort of not delivered by a physician, but just out there for you to read. Have there been moments in your cancer journey that you've used to inform the way you think care should be delivered?

Tom Guntly:

There's probably a dozen different ways. I'm trying to hone in on it.

Natasha Steele:

Yeah. Yeah.

Tom Guntly:

I keep thinking of that sort sitting on that table. That just doesn't happen anymore.

Natasha Steele:

Well, it's really interesting you say that because I had the 2020 version of that experience, which was in the state of California. We have laws permitting the release of medical data to patients without the review of physicians. So my diagnosis came on an app from a radiologist who wrote a report meant to be read by a physician, which fortunately I was, but unfortunately said that I had likely cancer and I was totally by myself for that.

I had my family, but I didn't have any medical guidance. And that remains a real issue for me, and I will use the word trauma specifically, even getting notifications on my phone that I have health results waiting for me and things like that, it just flashes me back to a time where I was given my medical information in a way that felt incredibly scary and unsupported.

And I think there's an argument for, and certainly patients should own their own data and should have control of their health information, but I think that trauma-informed care delivery systems have a real role in the cancer community, and I think it is just something I've become passionate about after having that happen to me and thinking like... Okay, we used to hold medical information from patients altogether. They would have to request their records through lengthy processes and get 300 pages like LD of printed-out vitals from the course of the last three years.

And so that's definitely not the answer, but is it an all or nothing where now we just data dump on people without really providing support and education around the information that we're sharing? So anyway, that's why I ask because you have this sort of span of the last 20 years of different touchpoints with the healthcare system.

Tom Guntly:

I wouldn't wish that on anyone to look at their own medical charge or get a notification in my health to say, "You have results," without someone that can interpret it and share it with them, that would be a nightmare. Even knowing what I had was scary when I was reading that, and recently I got some work done and there was my results on my health, and I didn't even want to open it just because I felt like I don't want to do this journey alone. And it's almost like I would want them to provide an option of you have health results. Would you like it read? Would you like them or would you like to schedule an appointment to go through it through Zoom? I think having that option.

The other part is also caregivers. Caregivers feel that they need to be more involved because the patient is hypnotized and traumatized with the information. And if English as a second language, adds to that. So I think having access or the availability of speaking with a professional with those results with the caregiver, I think that plays an equal role because they will hang on every word you do as opposed to the patient who may be looking through the physician when he or she is telling him the news because they are not even thinking about it.

Natasha Steele:

Yeah. And you're bringing up such a critical point about the role of caregiving, and I know some people have a bit of a reaction to that word. They might not identify as a caregiver. It might be a co survivor or just a care partner, but I think regardless of the words people use or how they identify, the role of that person cannot be understated or that family can't be understated. Certainly for you, it sounds like was such a big part of your experience over the last 20 years, and I wonder if we're doing enough in our current care models to support these individuals longitudinally. And there's all sorts of research on what happens to co survivor or caregiver health when their family member or their loved one's getting treated. And I think really innovative interventions would address both the person getting treated as well as their support network.

Elle Billman:

Yeah, Natasha, I couldn't agree more with what you said. We absolutely need innovative approaches to providing our caregivers more support. I think something that everyone in this room is all too familiar with is that our medical system has many pain points that makes navigating it really hard for caregivers and patients.

One of the pain points that I think adds a big burden to caregivers is the fragmentation of our system. I remember my mom told me this story that when I was receiving cancer treatment, she would sometimes have to go to the medical records office at the hospital I was being treated at to request a copy of my medical records. She would then take this copy and hand deliver it to another provider who was a part of my care team, but due to the fragmentation of our healthcare system, hadn't been granted access to my medical records yet. Keep in mind that this provider worked at the same hospital that I was being treated at.

To me, the story really shows how gaps in our system like fragmentation adds a burden to caregivers and is one of the reasons why they need much more support navigating our healthcare system.

Tom Guntly:

I agree. I think the handoff from your primary to your oncologist or your hematologist or the support structure after that, that's fragmented. It's not smooth. And so I think that needs to be shored up a little, especially upon diagnosis or after visits or, yeah, I think those are the fragile parts of the system. There's a lot of knowledge, but they're not always talking to each other. And I think that needs to be shored up for sure.

Elle Billman:

I was just going to say, yeah, those transitions. We've talked a lot as a team and specifically our team that's doing research together on the pain points in survivorship, and it's always those transitions transitioning off of care. And then if you're a child transitioning from being treated as a pediatric patient to a young adult.

Tom Guntly:

And there's a lot of trauma in that, waiting for that phone call, "Who is this person?" Because you feel the world revolves around you when you've been diagnosed and everyone should be looking after Tom. He's sick, he needs help. What are they doing? They're looking at a lot of Toms and so at least reassuring them some notification, letting them know. And I think those kind of frequent touchpoint are important, even if it isn't the full robust discussion that you'll eventually have, letting them know that you're there and sometimes those things go away.

Natasha Steele:

Tom, when I was diagnosed, my daughter was a couple of months old, and so I felt like my identity as a parent and my identity as a person getting treated for cancer sort of evolved in tandem and intersected the whole time, and that evolution has been ongoing. Can you talk a little bit about the influence of your identity as a cancer survivor on your identity as a parent or vice versa? How do those two components of your identity go together?

Tom Guntly:

I treat them one and the same. A parent and a cancer survivor parent, I think if I wasn't diagnosed, I would raise my family the same way, right? Healthy lifestyle, diet, exercise, all of those things. You certainly have to reflect on the illness that you have and you have to reflect on that. But they treat me, my family treats me the same and I treat them the same regardless of my diagnosis I think. I think at first they and people around me were walking on eggshells. They thought I was just vulnerable stick that could break any moment. But as I've matured and as I've continued to move through my life, people become more uncomfortable with it. I think probably the only time that I ever bring up any type of my illness other than my appointments, which aren't as frequent in this anymore, is just what I carried with me when I was diagnosed, which was like hope was a big deal. Hope cures all kinds of diseases.

When I was diagnosed, I was hoping they'd have a treatment because I wanted to be around so I could raise my boys and they'd go to college and get married, and I hope that I could be around longer than my parents because my parents, I don't want to outlive them to outlive me. That was trauma to them. So that was probably the one highlight in my illness journey about hope that I would probably overplay with them even at dinner.

They would allow me to jump on my hope soap box. They would grin and roll their eyes, and I would share a little bit about it. And then I would always tell them that quote from this Shawshank Redemption that hope is a good thing, maybe the best of things and no good thing ever dies. And they would stand up from... I remember they stood up once from the dinner table and took a couple steps and looked back and they said, "Tommy, you nailed that one." But I think that reflection of hope was a big deal from the beginning, and now it's kind of in the corner of my mind and it's gathering dust since I've been around for 20 plus years since then, but it's always there for them.

Elle Billman:

That's beautiful. Thank you for sharing. I haven't seen that movie, but I will watch it.

Natasha Steele:

You're really dating yourself now.

Tom Guntly:

When we talk about what tools that I use as a cancer survivor, I think the one tool that I use mostly is sharing my story. There's a philosophical movement called stoicism that I practice, and it's all about acceptance. So I accept that I have cancer, it's there, there's nothing I can do about it, but what I do focus on, what I can change, what I can make a difference is my story and my travels and the people that I've met and the resources that I have. So that's a big deal of what I do. That's one of the tools I use all the time is just sharing it. And I've done it in so many different forms.

When we talk about disclosure. At first, I didn't really want to, I just didn't want to be bothered with that. But now I seek out those opportunities, appropriate ones because I really want to share it to help what I have, make a difference for others. So I think disclosure is easier, and sharing my story is easier. And I've also found people want to listen to, they want to be listened to. And I had an episode, I think it was three weeks ago at a church event. We had a breakout session and we had a topic to talk about, and a woman kind of opened the door on something and we kind of skirted around the discussion, and then we had a break.

And at the coffee break, I went up to her and I said, "You open the door on something. I think I can kind of relate." And she had a big smile on her face, and she was diagnosed, and all she did is talk to me for 20 minutes, and I just listened, and she was so happy. So I think people not only want to hear information, but they just want to share their story, and that made my day even more than hers, that she could just, someone wanted to listen and someone was locking arms with her in terms of her journey that had only just begun. So I think that was a good experience.

Natasha Steele:

Yeah.

Elle Billman:

Yeah. I think Natasha and I have both felt all of the benefits from sharing our stories. And I know for me personally, it was almost healing to share my story and connect with other people and learn about their stories.

Natasha Steele:

Yeah. And it shouldn't be understated how hard it can be. I mean, these stories are deeply personal and they contain a lot of things that are really challenging. Some of them we've navigated and come out the other side of some of them. We might still be working our way through. And I think that for those, figuring out how to tell their story and what version to tell and what parts of it are going to be relevant, I think that it's a process. And sometimes even now I get it wrong.

I share a part of my story with someone who's going through something maybe similar but different, and it scares them. They're like, "God, I didn't even know I could worry about this or that." And so I think that really figuring out what parts of your story resonate and what parts are important to share and be vulnerable about creates so much space for others to do that. Just like you're saying, Tom, and really acknowledging that it can be incredibly challenging, and it doesn't always go the way we hope is also important for people that are just starting to navigate things like disclosure and storytelling and using it as a point of connection rather than internalizing shame or worry about their illness.

Elle Billman:

Well, with that, I'll go ahead and wrap us up. Tom, thank you so much for coming in today and sharing your story with us.

Tom Guntly:

Good. Thank you for that opportunity.

Elle Billman:

Yeah. Awesome.

Natasha Steele:

Yeah, Tom, you shared so many beautiful things that I know that our listeners will be able to use in terms of advocacy and finding purpose and meaning, the things that got you through this experience, and we're just super grateful.

Tom Guntly:

Wonderful.

Elle Billman:

If you enjoyed this episode and you'd like to help support the podcast, please share it with others, post about it on social media, and leave a rating or review. Your host today were Elle Billman and Natasha Steele. This podcast is produced by the Stanford Medicine Ed tech team. Our producer for this episode was Deila Bumgardner. Our creative director is William Bottini. Our sound engineer is Bindu Madhava. This episode was edited by Grace Sextro. Our guest today was Tom Guntly. For more resources and information from our hosts and guests, please visit our podcast website at www.healthaftercancer.com. Thank you for listening.

Meet your hosts:

Natasha Steele

Natasha is a young adult cancer survivor, an internist and researcher, and an incoming faculty member at Stanford Medicine.

Elle Billman

Elle is a childhood cancer survivor and 2028 MD candidate at the Ichan Medical School, at Mt. Sinai, in New York.

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