Molly Hones and Dr. Mark Lewis | Conquer Cancer, the ASCO Foundation

Dr. Mark Lewis:
This podcast is brought to you by Conquer Cancer, the ASCO Foundation. Our mission is to accelerate breakthroughs in life-saving research and to empower people everywhere to conquer cancer. Welcome to Your Stories, a podcast where we hear candid stories from people conquering cancer. I'm your host, Dr. Mark Lewis.

"The world breaks everyone and afterward many are stronger at the broken places." When he wrote this passage, perhaps among the most famous lines in American literary history, Ernest Hemingway was talking about the impact of hardship on human beings. But he could have just as easily been talking specifically about Molly Hones.

Over the past two years, Molly experienced more hardships than many see in a decade or longer. First, she was diagnosed with an extremely rare liver cancer in 2023 at 31 years old. Then, just a few months after reaching remission, Molly was diagnosed again. Just a few weeks later, Molly was participating in a clinical trial at the Johns Hopkins Hospital under the care of Conquer Cancer funded oncologist Marina Baretti, when a phone call brought unthinkable news. Back home in Wisconsin, her husband had suddenly passed away from a brain aneurysm.

But it's not just the difficulties she's faced that set Molly apart. After all, grief and hardship are, at least to some degree, an inevitable part of the human experience, as first steps, first words, or first love. Instead, what sets Molly apart is her ability to come through all of these challenges and still emerge saying, "I'm just so excited to see what comes next."

Molly, thank you so much for being here with us today. It's truly a privilege to have you on the show.

Molly Hones:
Thank you for having me.

Dr. Mark Lewis:
So tell the audience, where are you joining us from today?

Molly Hones:
I'm joining from the beautiful and sunny Madison, Wisconsin.

Dr. Mark Lewis:
I love it. Go Badgers. We were talking before we started about how summer in the Midwest has a particular appeal, and I'm so glad that you can bask in the sunshine, even knowing that winter is a few months around the corner.

So, Molly, if you don't mind, as an oncologist, what I always do with my patients is try to determine, you know, when did their story, some call it a journey, with cancer begin? Can you take us back to the time of your first diagnosis and this extremely rare disease being found in you?

Molly Hones:
It was 2023, wintertime, January. I remember it, very cold days. And I actually went to the emergency room because I thought that I had a ruptured ovarian cyst. And fortunately, that trip to the ER most likely saved my life. When getting an ultrasound, they noticed a very sizable mass that was growing on my liver. And ultimately, that was a tumor from fibrolamellar cancer.

Now, fibrolamellar is a cancer that impacts only one in five million people. And unfortunately, because this only impacts otherwise healthy children and young adults, most patients don't get diagnosed until their disease is quite advanced. So what we did was we did some monitoring just to ensure, like, what is this? What's growing? And ultimately, in June 2023, I had a resection surgery where they took out the tumor and also my spleen and part of my diaphragm.

After the surgery and pathology reports, I can distinctly remember recovering in the hospital bed and my surgeon coming in and telling me, "You have cancer." At first, I was kind of shocked, but at the same time, because we already knew that there was something growing, I was already mentally preparing myself for what this might be. And that summer, I put a bunch of time and energy into recovering from that surgery, making sure that I'm getting good nutrition, keeping up with physical therapy because I wanted to be in the best shape possible for the fight that was coming.

And in August, I started radiation and radiochemo. Within about 35 sessions, I completed my treatment and eventually, later that fall, I was in remission. No evidence of disease. We were celebrating, and I was looking forward to putting this all behind me, because when you have cancer, especially at a young age, you want to make sure that you are keeping an eye on the future, you know, not to get stuck with it because going through cancer is quite traumatic. And spring of 2024 was a spring of healing, a very restorative time for me. And then, just as the lilacs were blooming, I got the call. It was back. And this time, it had metastasized to my lungs.

And at that time, I'm from Madison, Wisconsin, the University of Madison, we are very proud of the great research that they do at that institution, and clinical trials were always talked about as an option for me. And when I found out that my time left might be limited, I knew exactly what I wanted to do: contribute to a cure. So we got in contact with Johns Hopkins. I distinctly remember going to work and getting the phone call from Dr. Baretti that the insurance approved everything. We were all systems go. And within 30 days from getting that initial call that I had stage IV cancer, I was getting my first peptide vaccine as part of the Johns Hopkins peptide vaccine clinical trial for fibrolamellar cancer. It was just incredible. We were moving at a blistering pace. And those first couple of weeks, I actually went out to Baltimore because you have to get treatment every week. And after my second treatment, that's when we found out that Grant had passed away. And two days later, I was back in clinic, and I was going to keep to the plan.

Dr. Mark Lewis:
Wow. There's a lot of words that come to mind. One is, first of all, you're so articulate talking about things in your life that were just unspeakably difficult. You somehow find the words for that, so thank you for sharing that with us.

And the real word that comes to mind is this resilience that you have in the face of truly unanticipated hardship. As you're discovering, cancer doesn't respect age. My practice, the average age of patients here that I treat in Utah, Molly, is 68, and Utah is the youngest state in the nation. But I have patients as young as 15, and it just strikes me as tragic at any age, but there's something about taking care of children, teenagers, and young adults I find particularly moving. My cancer diagnosis actually came when I was 30. And somewhat like you, I tried self-diagnosing. I didn't think I had a ruptured ovarian cyst, of course. I actually thought I might have appendicitis, and that was actually the first clue I had that I was dealing with an abdominal malignancy.

So if you don't mind, what I'd like to try to do, I'm not a therapist, I'm not pretending to be one, is kind of process the various events you went through that I think are reasonably described as traumatic. What went through your mind when you were first diagnosed and particularly as you started to realize just how rare a disease this is? Like you said yourself, you're not just one in a million, you're one in five million. So fibrolamellar cancer is an extremely rare variant of hepatocellular carcinoma or liver cancer. I've had the privilege of taking care of just a few young adults, all women as it happens, with this diagnosis. It's a true privilege, but as you're well aware, it's also a disease space where there's not a tremendous amount of evidence because there's just not a lot of patients. So how did you process not just the diagnosis, but the rarity of this?

Molly Hones:
Yeah, that's a great question. So the way that I pictured it was, we cannot control what happens to us, but we can control our attitude and our actions that are within our locus of control. And I thought, how can we reframe this? One of the things that was told to me when I was initially diagnosed in 2023 was not to go on Google, not to go seeking out statistics, to stick to only the reputable sites. And I can remember looking at statistics. I wanted to know what my survivability might be. I like looking into the data, and unfortunately for fibrolamellar, because our patient cohort is so small, believe it or not, I ran into a statistic that said that like the two year and five year was 7% to like 92%. So that data is garbage. So it's like, okay, we're flying blind. We are flying blind. We are in new territory. So what do you do? That's when I really started to embrace that we're on an adventure. I'm on an adventure. Humans and mankind have done exceptional things in the past where it might feel like a gamble and then things pay off. I always think back to astronauts. I always loved space as a child, and thinking about some of those first folks who were just hopping onto a tin can and being shot into the sky. I'm going to try and see if we can reframe what cancer could be, not a death sentence. What if this was a chronic illness that had flare ups and then we can just take care of it in the clinic and then I live my regular life? What if we could make that option available for everyone? But to get to that point, we need people to be contributing. And I know that clinical trials can be sometimes scary because it's something new, it's something that might not have a lot of data. But as patients, it's a great way to take back our power. And I like to say, I'm donating my body to science while I'm still alive. And how cool is it to see my legacy when I'm still around? What a great opportunity to step up. Especially on that second diagnosis, I thought, I've spent my entire career up until this point writing policy for the Department of Children and Families in the state of Wisconsin. I've been a huge champion for kids. And to be able to pay it forward, to be able to help, that's how I'm going to spend my time. If I'm going out, I'm going out in the driver's seat with a smile on my face, because what a privilege it is to experience all of this happening, even the bad.

There is meaning that we can find in suffering. Viktor Frankl has a lot of really great books on that. And it's something that is unavoidable. It's a part of life. But that suffering is also what brings us the beauty. It's also what brings us the reminder of what we're here for. And everybody has their own mission, their own goals. And to be able to be pushed into that, and especially after Grant passed away, having that double down that death is a certainty for all of us at one point in time. Some of us know when that might be coming. We might have a little bit more data. And then for others, it might happen like that. And that just reinforces that every day, we need to take stock of how are we going to take on this beautiful thing called life.

Dr. Mark Lewis:
Wow. Even- I'm participating in this interview right now, I already know I'm going to be re-listening to it to buoy my spirits as an oncologist. As a patient, you are just remarkably inspiring. You said so much there that I want to unpack. One is, I think you're absolutely shattering some of the myths about clinical trials. Often when I raise clinical trials with my patients, I see this reaction, Molly. You'll understand this, even if I don't think you identify with it personally, where they think, "Oh my gosh, this is a last resort. You know, my doctor thinks I'm at death's door." Sometimes a clinical trial is actually one of the first things you should be considering, especially with a rare disease. Also, I think there's a common misconception that if you go on a trial, you're definitely going to receive a placebo or perhaps you're going to be randomized placebo. That is, you're well aware, that's not always the case.

And so I do think we need to change our attitude towards clinical trials, because you're right, one of the things I realize as an oncologist is part of my legacy is still practicing in an era of really unfortunate indiscriminate toxicity. Like when people come to see me, they are absolutely terrified of me and the drugs that I'm going to prescribe. And I know when the history books are written, we are going to look back on this era of oncology and just sort of think it was just strewn with examples of folly. I can well picture that chemotherapy may actually become one of the last things that we do in oncology. It might even disappear altogether. But the only way we're going to get there, short of sheer dumb luck, is through clinical trials and rigorous research. And that of course, takes patients like you who are willing to participate.

So I'll say this, while I'm absolutely delighted that you get to benefit from therapeutic advances, I think it is remarkably selfless of you. And I loved your quote about, you know, you get to give your body to science while you're still alive and you get to see the benefit of that both personally and for the field. So I thank you as an oncologist.

You clearly are a wordsmith. I want to talk to you a little bit about words. So when you went into that first remission, I'm just really always curious about semantics. Did your oncologist, and I'm not saying this as a matter of judgment, did they ever use the word ‘cure’ with you or was it very carefully phrased as ‘remission’?

Molly Hones:
I think we used it as a way of cautious optimism because we're seeing some of the data coming out and it's really exciting and it's promising. But with science and terminology, sometimes that takes time to catch up. And when I think of the word ‘cure’, it's like, what are we talking about? Are we talking about no evidence of disease permanently? Are we talking about, are we going to treat this of like, similar to how we would treat somebody who has IBS or, you know, another chronic disease? Is it no big deal?

And I think that when I use the word ‘cure’, I think of it as a person who is able to live the life that they want to live and cancer is not holding them back. I hear stories from other patients with fibrolamellar, with other patients of disease, some of my own family members who were given six months to live, 12 months to live, 24. I think I was initially given 26 months. And people are still around 20 years. I met a woman who was a seven time cancer survivor, and she was, if I can swear on- she was a badass.

Dr. Mark Lewis:
We'll, we'll allow it. Yes.

Molly Hones:
It becomes one of those things where I think we're shifting into a new era where we need to be having some conversations about how we're talking about this, how we're talking about, when you hear stage IV metastatic, you think that's a death sentence instantly. But at the same time, there's people out there that are still living their life with it and not only living a life that they're happy and they have high quality of life, they seem really fulfilled and not fearful. And I think that's one of the things that actually was one of my biggest challenges in my fight with cancer is the mind game because we have so much reinforcement, not only in the medical community of how we talked about it, or like, "Oh, both my grandfathers died of cancer." And this is 20, 30 years ago, it's a different paradigm we're in. But then you look at, especially as a young woman, cancer within pop culture, if you have cancer and it's a book, a TV show, or a movie, you are certainly dying and it's going to be a part of the plot.

Dr. Mark Lewis:
Agreed.

Molly Hones:
We don't need that anymore because it's a disservice to patients who are recently diagnosed, who are having these treatments like immunotherapy or, I think it's the CAR-T therapy where it's like, this is brand new technology and it is changing lives. How can we really boost that and promote that? Because I personally struggled with not having too many role models that I could look to. So I kind of had to turn inward, really lean into stoicism, but also stoic joy, and smiling through the suffering, make jokes, have humor. You make a choice to march boldly forward, and it brings along so much development that you don't think you had within you. It brings strength and courage that you don't think you had within you. And I encourage folks, if a clinical trial is an option for you, explore it, talk to your oncologist about it, explore your options because not only are you helping yourself, you're helping others. And how exciting is it to be a part of history?

Dr. Mark Lewis:
So well said, and I mean, you invoked stoicism, like a modern Marcus Aurelius. You invoked modern pop cultural references to cancer, I agree with you, are frankly, I think often needlessly grim and pessimistic. Like I love John Green, but you know, The Fault in Our Stars paints a very tragic outcome for a young adult cancer. And you're definitely part of overturning that stereotype.

I guess what I'm also curious about is when you're diagnosed with such a rare disease, I know you, you kind of, were forewarned about not pursuing Dr. Google, but did you find any kinship online? Did you use social media or support groups online to find something coming close to a kindred spirit for you?

Molly Hones:
I did. And funny enough, so when you have a rare cancer, there's not a lot of us. Just full stop, there's not a lot. We don't have the big organizations, we don't have the specific month. Ours falls under the liver cancer umbrella, of course. But one of the challenging things is, like, what do you do? How do you find community? And I actually found community online through a hashtag. I just started posting about my experience. I started going online on Facebook, on TikTok, on Instagram, just to see if there was anybody out there. And I ended up finding a very amazing and active Facebook group called ‘Fibrolamellars of the World Unite’. And there's only 800 of us in there of patients and families. And that was kind of, shook me to my core of realizing this might be all of us, or a good chunk of us.

One of the things that I want to do is, if there is a person out there with fibrolamellar or if they have rare cancer, I really encourage you to get involved with the community so you don't have to go through it alone. Back in 2023, during those first couple of months, I was going through it alone. I felt so much despair because I didn't have anybody to talk to about it. I could talk with other young folks, but it's like, having a rare disease, it just kind of breaks your brain a little bit. And finding that camaraderie helps me keep going, but also, I’ve got to say, we make some pretty great cancer jokes in this Snapchat. And comic relief sometimes is what everybody needs. I think there's something to be said about approaching hard things with humor.

Dr. Mark Lewis:
Yes. Oh, man, so much to unpack again, very briefly on that last point. I'll work backwards. I had a medical student in my clinic last month. And at the end of his rotation, I asked him what I ask all the students is, you know, "What really surprised you about your experience?" And I think you'll like his answer, Molly. He said, "The two things that surprised me the most, Dr. Lewis, were the hope and the laughter." I don't think he actually expected much levity in a cancer clinic. And I'll be honest, it's the patients who are usually buoying our spirits as much as vice versa.

In regard to your comments about rarity, you know, I actually, I'm starting to feel garden variety on my side of this conversation because my condition has an incidence of about one in 30,000. So I'm a dime a dozen compared to you and your fibrolamellar brothers and sisters. But I'll say, you're right. Membership in these communities, it's like the clubs we never wanted to join, but the privilege of membership is really hard to put into words. And you said it yourself. I think it's a wonderful sort of way to inoculate yourself against isolation. I think it's really hard. The brutal attrition of watching fellow members pass away is extremely difficult. On the other hand, other people's experience may lead you, for instance, to what you've already spoken about, to clinical trials or at least treatment opportunities you might not have known about otherwise. So I think that's really, really important to advertise to folks, no matter how rare the disease, there's almost certainly someone or some people you can find, particularly online these days, that are going through something similar. And then if they've gone down the road a little bit ahead of you, maybe they can signpost the way that's right for you.

I want to go back to another word that you just used or have used earlier in the conversation, and I think probably pretty purposely, and that word is ‘grief’. What I see, Molly, in my practice is when someone's diagnosed with a cancer, especially if they assume it's going to be a death sentence, but sometimes even not, I see them go through the Kübler-Ross stages. Typically starting with denial or disbelief and then sometimes a period of anger, sometimes that's directed towards me, I understand that, and then bargaining and acceptance. And that typically is when we can get started on treatment. Because you've been through so much as such a young person and with this horrific and unforeseen loss of your husband in the middle of this, is grief the right way to articulate your experience with either initial diagnosis or recurrence? And how does it differ from the understandable bereavement you would experience after the loss of your spouse?

Molly Hones:
Excellent question. As far as grief goes, I think it's important to remember that the grief stages don't always come in order. And it also, it's not restricted to a time frame either. So with cancer, it really didn't hit me until after I hit remission, interestingly enough. And it was more of, and this is back in 2023, it was more of, "Okay, I just went through this. I might have to go through it again. What can I do and how can I work with my team to set myself up mentally for resilience, for that long haul, for a fight?" Because fibrolamellar has a pretty high rate of recurrence. And with that, I made the decision to start EMDR therapy and really taking an aggressive approach to the trauma and mental health as aggressive as what we did with the cancer. And I think that set me up for having so many more tools at my disposal the second time that it comes around.

And when my husband passed away, it was a shock. He was 45, brain aneurysm, came out of nowhere. And I thought to myself, because Grant was a veteran, he spent time in Iraq and Afghanistan as a contractor and goodbyes were always sacred, whether it's on the phone or when I was leaving for Baltimore to be on the trial, you treat each goodbye as if it's your last. Now, some people might say that's really, really dark, and it kind of is. But it's something that's certain in our life that it's coming for us. And I think one of the more surreal things for me was when I found out that I had stage IV cancer and Grant passed away six weeks later, we were planning for my funeral. And having that reversal was just shocking and, of course, deeply upsetting. And what I did was I turned that abrupt and acute trauma into accepting that that's part of my story and doing what he would have done. And that's stick to the plan and you keep moving forward. It was extremely hard, but I have to say the team at Johns Hopkins, Dr. Baretti, social workers, the nursing staff, the clinical research staff, everybody rallied around me so much that I didn't have to miss a treatment. It was very challenging writing an obituary while I'm getting an infusion. It was very challenging trying to make arrangements a thousand miles away. But we don't get a choice of the cards that we're dealt with. But again, we get a choice of how we approach it. And really with his passing, we didn't have a funeral. We had a celebration of life. And I told everybody that we need to be celebrating life every day because we don't know when it's going to be the last. But also, I think we owe it to ourselves as humans to celebrate life.

And one thing that I encourage folks to do is lean into the joy. Remember why we're doing this and move at the speed of the light that's in our hearts and just keep going because it's so easy to imagine what the worst case scenario is because we've seen so many worst case scenarios before. It takes creativity and it takes a sense of bravery to think of the opposite. What's the best outcome? Heck, what's the middle outcome that would still be positive, you know, trending us in a positive direction? And just keep marching bravely forward. One thing that has helped me is I dedicate treatments. So if I'm fighting for somebody, I'm going to, I'm going to get my infusion. Okay, I'm thinking to myself, “I'm going to be positive, I'm going to get into the right head space,” and I dedicate it to somebody, often somebody with fibrolamellar who has passed. And remind myself, it's our job to bring about a future that is positive for everybody, to honor everybody that we have lost.

Dr. Mark Lewis:
Wow. I mean, to hear someone like you say to find sort of the enjoyment in every day and sort of suck the marrow out of life, I mean, Molly, it comes across as like the farthest thing from trite because you can say that having gone through the crucible, not just of your disease, but of multiple different forms of loss as such a young person. There's a quote from my father. He passed in 1994 and you really remind me of him in terms of your attitude, and that's the highest compliment I can give you because he's the best man I've ever known. He had this quote after his diagnosis where he said that the cancer crisis "affords us the opportunity now, however brief or lengthy, to discard the trivial and the shallow and to fill every moment and relationship with meaning, intensity, and value." That was his quote. And you obviously arrived, you know, through different paths and you phrased it differently, but that really strikes me as sort of your attitude as well. And I think you're also doing a fantastic job sort of separating what you can and cannot control. There are absolutely things that happen to us and to our loved ones that are horrendous and unforeseeable, and then we have to deal with the ramifications of that. That's what I hear in you. I hear a tremendous sense of agency, a call to arms for other people to embrace their agency and autonomy. And I just think the world of you. I know we just met. This has been one of the best conversations I've ever had on this podcast. I actually already think I may know your answer, but I'm going to end by asking you the question that we ask everyone in this series, which is, what does it mean to conquer cancer and do you think we're on the path to doing so?

Molly Hones:
Not only do I think we're on the path to doing so, I think we are moving faster than people realize. Some of us who get to experience it firsthand, I've talked to other patients who have been in similar trials, and so much good is coming and we just have to have faith that we're going to follow through. Things are looking good. I think the future of cancer and cancer care is better than what we could even imagine. There are going to be treatments out there five, 10 years from now that we can't even fathom. I'm just so excited to be a part of that and rally with the crowd because we're going to all conquer cancer together and nothing's going to stop us.

Dr. Mark Lewis:
I'm ready to run through a wall right now, Molly. I have to say, to use your own framing of this, you're such a bold adventurer in this space. And I know that everyone listening to this joins me in really wishing you the best of health. But I also say that if the future is brighter, it's because of the light of people like you, patients like you. You are, thankfully, benefiting from therapeutic advances, but at the same time, you're contributing to them very, very purposely. And I hope you know that really is a part of your legacy. And again, it's been just an absolute delight to get to talk to you today.

Molly Hones:
Thank you so much for having me.

Dr. Mark Lewis:
Thank you, Molly. And thank you for listening to this podcast brought to you by Conquer Cancer, the ASCO Foundation. Conquer Cancer is creating a world where cancer is prevented or cured and every survivor is healthy. You can make a gift at conquer.org/podcast.

The participants of this podcast report no conflicts of interest relevant to this podcast. Full disclosures can be found on the episode page on conquer.org. The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.