Helen Shih, MD: Treating Cancer in the Era of the Opioid Epidemic

As a radiation oncologist specializing in brain tumors, Dr. Helen Shih is accustomed to treating patients with very serious prognoses. However, her experience a few years ago treating two young brain tumor patients also facing addictions tied to opioid use shifted her perspective on this work. The opioid epidemic has increased the number of patients with substance use disorders and during treatment with cancer, and these young men opened her eyes to this ongoing problem. Helen, who serves as the medical director for proton therapy in the Mass General Cancer Center, was inspired to learn more about addiction and the challenges these patients face directly from the people experiencing them. This led to the creation of the Substance Use Disorder Tumor Board, which brings together a diverse group of clinicians to help guide patients struggling with both cancer and drug addiction. 

Helen hopes that by combining her expertise in brain tumor care with her understanding of addiction, she can help improve the outlook for these patients. So welcome, Helen.

HELEN: Thank you for having me.

Q: I wanted to start out by having you talk a little bit about how you got interested in addiction and learning more about it.

HELEN: It was really not on my radar. I had really spent the majority of the last 15 plus years focused on brain tumor patient care, specifically in the setting of radiation therapy and also  specifically was one of the specialty resources at MGH of proton therapy. But as you mentioned, about five years ago, I encountered two patients in a row who were not interested in receiving the care that we wanted to provide them. Specifically within adult brain tumor patients, most of what I treat are malignancies that are not curative; brain metastasis patients, high-grade glioma patients – these are patients who are hoping to extend life and quality of life from weeks or months to many months and actually years sometimes. 

And with these two young men that came along, they were in a subset of patients who had rare tumors that were very aggressive but actually highly curative if treated. And neither one of them wanted to receive the treatment I recommended. And that was highly abnormal to me. And I said, “Wow, I really can’t have you just walk out of here and die.” 

And in both cases, they're just like, “I've got other things. I'm probably going to overdose and die anyways.” And I tried to get them help. We have a wonderful resource within the Substance Use Disorders Initiative, both psychiatry, psychology, addiction medicine. They were just not interested in going. And at this time as well as back then, the demands for addiction care is so large that our resources are insufficient to match the needs out there.

And then if you're trying to bring a patient who doesn’t want help who also has a cancer diagnosis who has pain related to cancer – so complex. We didn’t have the facilities to take care of these patients. And so I made that my journey to say, “Well, I have to bridge this gap because you're young men who are curative.” And they didn’t know their predicament. There's something unique when you're in the throes of addiction. You can talk to these individuals and you just can tell that they're not entirely there. And that’s something that I really saw through fruition. We got them through radiation treatment. We got them into sobriety. 

And it was really heartwarming, you know, six months later after treatment completion to have them come back and be like, “Wow, thank you. I actually do want my life.” And actually, in both cases, they didn’t remember much of what happened during the time of treatment because they were either in withdrawal or they were still actively using. And it does really alter your cognition.

Q: What has been your journey since then to now, where you're in a very different place now in your understanding.

HELEN: At that time, I knew very little bit about drug addiction. And I think I would succumb to every lie and trick that many of these persons are really talented at. Substance use disorders, intrinsically, it’s a disease, that people make bad decisions inherently. Lying is instinctive; it’s protective. They don’t even know when they're lying sometimes. They believe their own lies. And then it changes, and then you realize there's something that’s inconsistent. 

So one of them actually said, “You don’t understand what I'm going through.” And I was like, “Yeah, you know, I really don’t.” So I really took it to my charge to try to live their life as much as possible without actually using drugs.

So I tracked their course of life, essentially. I did home visits with them, talked to their families, met their friends, who were also affected by drug addiction, went to AA meetings and NA meetings. I went to shelters, as many recovery homes and programs as possible around the city. I also was fortunate to be in the class of 2016 of Lead Boston, which is sponsored by the YWCA, which is a leadership program that really looks to advance people’s leadership within our city with regards to social responsibility issues, whether it be housing, education, law enforcement.

And I got to meet leaders throughout the city in these different disciplines in have continued to work with judges, Boston police, other city leaders and learning from them their experiences interfacing with the addiction population, doing ride-alongs with the police, visiting, sitting in on drug courts, having passionate discussions with various judges in the city, and really seeing it from different angles to better understand the disease. Because I feel like ultimately, even though that’s not my clinical specialty, to understand what a person goes through – it’s not just the biologic disease itself. It’s the lies. And I felt like the more I knew there, the more I could bring home back to being a better oncologist, and a caretaker for people with these dual diagnoses.

Q: The work you’ve done in going out and on the streets, so to speak, learning about addiction and the experiences of these people, how does that overlap with the work that you're doing within the Cancer Center?

HELEN: So along with many other colleagues the psychiatry department division within the cancer center also in parallel was recognizing the same problem that I was, and realizing that that's a whole entity to itself, the addiction component, that really needed to be woven in. So we came together and went to the Cancer Center leadership and created the Substance Use Disorder Tumor Board, where clinicians within the Cancer Center, have come together to work through these difficult cases. There aren’t many patients, thankfully, overall that when one arises, they do require an exponentially greater resource. 

Q: And can you tell me a little bit more about the unique challenges of caring for someone who has these dual diagnoses?

HELEN: Both oncology and addiction are complex in themselves individually. And the way medicine has evolved over the years, it becomes more and more specialized. There isn’t just the one oncologist. In fact, at Mass General and other tertiary care centers, there's multiple kinds of medical oncologists – at least ten different kinds by each disease site, and then it gets subdivided even beyond that. And in addiction, As we understand it better, it is an intricate team between the psychiatrists, a psychologist, a social worker, any number of other types of clinicians or therapists. And there is a high level of training within each specialty. And because we tend to be siloed in our specialties, it then becomes a challenge when you bring them together. And then it also becomes additional challenge in oncology because pain is a big part of cancer care. And we have much, probably more generous use of opiates to manage cancer pain.

And if someone has an opiate use disorder or is at risk, you're going to be in a lot of pain and need the pain control and then become addicted. You can already be with the opiate use disorder and actively trying to figure out how to manage it. And then there's the third category, which is one that’s dear to my heart because I know a lot of these people are people who've actually made it into recovery, which is such a beautiful thing. You’ve gone through so much trials and tribulations in life, and when you finally get to the point of recovery, it’s like second chance in life. Same thing for a cancer patient, I think, similar to someone who's affected with addiction. But then to be faced with cancer and surgical pain or cancer pain and being like, what do I do? How do I control this pain?

And for each, it’s a little bit different. Some of them absolutely refuse, like, I can’t have any opiates. I do not want it. And they’ll just scream in agony and settle with their Tylenol. And others, it’s like, I can feel the high as I'm taking the medication. This really scares me. And in a few cases, people can relapse. So it is challenging for those reasons.

Q: What do you do in those cases? Does one problem become a frontline over the other? 

HELEN: I think to me, they're both equal. And I think if you were to talk to the average cancer doctor, they're going to tell you the cancer. If you don’t control the cancer, you're not alive, then it doesn’t really matter. But on the addiction front, if it is an opiate use disorder, well, you can die from that also, pretty acutely, actually. I think they have to be managed together, and I think one of the challenges in managing the addiction patient population is they need lots and lots and lots of support. Almost a 24/7 type support. And if we don’t have a system where there's that support for them, this is where the 12-step programs comes in great because peer support is unlimited there. 

Q: And how do you support patients through that, as the clinician who maybe can’t be there every step of the way?

HELEN: It is very challenging. So, I would love to be there individually, but then that would be a 24/7 job. You end being literally like a caretaker or a sponsor to these individuals. It’s guidance. I try to check in. I call them more often. They definitely get a little bit more time and attention from myself. I have a nurse practitioner. I have an administrative assistant who is compassionate and willing to reach out. So the whole team really just believes in the cause, and we all take turns in terms of trying to check in enough to make sure we help bridge the gap. Some people are more stable and comfortable. Others need a little bit more assistance. But I can’t give a big enough shout-out actually to our social workers, because I would say they, more than anything else, have taken on a lot of this responsibility.

 Q: And when it comes to the tumor board within the Cancer Center, can you talk a little bit more about that group? 

HELEN: It’s a small group, actually, of folks who are the keys members who are interested in this union of diseases. And there's usually representation from oncologists, a variety of providers. Again, I would say that nurse practitioners are our biggest champions in terms of that continuity of, frequently, daily patient care. And then having pain palliative care represented. And then members of the Substance Use Disorders Initiative psychiatry and addiction medicine and psychology.

 Q: And have you found with colleagues across the center, do people embrace the board? Were they curious about it? 

 

HELEN: I think people are sympathetic, are grateful that those resources exist. But everyone's really busy, and unfortunately, there's such a huge stigma against addiction. I see it in my colleagues too, that it’s not so much a negative stigma, versus like “Wow, that’s going to take a lot of time and energy and effort, and I don’t have it, so I'm really grateful that you guys are there. Can you help out and take over?” And I think that’s probably the appropriate response because if you're a surgeon, your best skill set is in surgery or surgical management, perioperative management of your patients, not dealing with the psychiatric issues, mental health issues. So I would say it’s been embraced, and I think people are grateful to have that additional resource.

 Q: You mentioned stigma, and I'm curious. You went through this journey of learning. Were there moments when you realized your own stigma that you had to work through breaking down?

HELEN: Sure, yeah. I had a lot of frustration when I first started on this journey because of realizing the stigma that was out there, even in the medical community at large. Not necessarily physicians, but actually just everybody, all staff members. 

I myself was just really naïve, and that naiveté is about as bad as a negative stigma because I really knew very little, and I felt that was almost harmful. I was believing the lies that were being fed to me because it just never occurred to me someone would lie to their doctor. And I think that really lost a lot of time in getting my first patient in for timely care, and time was everything in terms of curability. 

But I'm really happy that over these last five years, I really feel like the hospital’s transformed. Society has made huge steps forward to understanding that people don’t say, “Hey, I want to become a drug addict. Hey, I want to become a cancer patient.” Life happens, you know?

And I think as people are becoming more and more sympathetic to how people get affected by addiction, I think we can battle this disease much more effectively moving forward.

 Q: There were those two early patients that sort of set you on this journey. Have there been any other particular experiences or people that you’ve met that kind of make you feel like you're at a turning point?

 

HELEN: It’s very humbling. I've had a few along the way. I had a young guy a few years ago, he did not admit to a substance use problem. I sensed it, and you have to spend so much time with these folks. And that’s what I do. You just invest a lot of time to build the trust. Because unless you can build some level of a real relationship, they're not going to tell you anything. And I did not achieve it. In fact, he didn’t show up to radiation treatment one day, and our therapists are really diligent, so they called out, didn’t reach him at home, and they called around, and they found his roommate.

And eventually, they found him. And he nearly died. He overdosed and he was unconscious. And they brought him in. They were able to resuscitate him. He's doing alive and well today, fast forward two more years. But you know, that was right under my nose. So it’s very humbling. Or at least for me personally, I don’t think I will ever be a champion of it. I'm always on the learning curve. I'm always humbled by how much I learn along the way.

 Q: And I'm wondering too – as you said, it’s humbling and you're learning things every day. And this isn’t all of your day-to-day work. Are there ways that this particular work is feeding into your day-to-day with other patients?

HELEN: So, that’s a great question, and I think that’s something I'm still working on. You are correct that, I would say like 90% of my time is really working with the nonsubstance use disorder-related brain tumor patients, cancer and non­-cancer, actually, as well as the administrative leadership within MGH. 

My clinical specialization is in central nervous system – tumors, which are predominantly brain tumors. But we think a lot about how the brain works – the anatomy, the physiology – and so I think more so than other oncologists, I'm a little bit neurologically focused. In addition to traditional cancers, other things that we also are increasingly treating is a field, what we call “neuromodulation,” where you're using radiation therapy to affect how the brain works. So we can use it to decrease pain in specific pain syndromes when medications don’t work.

We can use it to help relieve seizure syndromes where, again, medications or surgical procedures don’t work. And I think there is a large opportunity that’s untapped or just in the infancy of figuring out, how can we use other things, whether it’s radiation, other transmagnetic cranial stimulation or deep brain stimulation – these are different techniques – to affect how the brain works?  

It is very much in its infancy. It is not standard of care. It’s not done on humans. But you know, the first two folks I treated are no longer using the substances they were using at that time, so maybe there's something to be said about dampening down hyperactivity in the brain that might help give people a little bit better control, reduced risk of relapse. We definitely see some early data that’s really exciting with deep brain stimulation and TMS. So there might be something there in the future, but it’s still very early to say.

 Q: Can you talk a little bit about proton beam therapy generally? I know I came to this knowing radiation therapy, but not knowing the nuances of the different types.

HELEN: Radiation therapy is used to treat a variety of different kinds of mostly cancers, but also some benign conditions as well. And then proton therapy is a subset of that that really had its birth at MGH back in the 1960s at the Harvard Psychlotron Laboratory at Harvard University, where the physicists there felt like the physical properties of a proton beam -- which is a bundle of energy coupled with little proton particles – would allow them to better control the radiation, and the radiation beam actually stops. So normal radiation or high energy x-rays travel through us. The highest dose is usually upstream, so shortly after enters the body. And then it kind of peters out. We use multiple beams that come from different directions to get the high dose of radiation in our target with protons because the beams stop.

So there's a little bit of dose upstream, but actually most of the dose is concentrated near the end of the beam, so it’s actually ideal. You want most of the dose at the end of the beam where it’s going to be in your tumor or target, and then the beam stops, so there's no radiation beyond that. So with protons, we’re able to give much higher doses of radiation safely to very challenging tumors that need higher doses to control. And even more important to my practices where I don’t need those super high doses, I can give the same doses in the same tumor control, but with much less radiation to the surrounding brain and tissues, we can hopefully significantly decrease side effects, particularly things like neurocognition, hormonal function, vision, hearing.

 

Higher energy beams travel farther, and so we have that all figured out. And we created a radiation treatment plan before we actually treat the patient. And what's really fun in radiation oncology – maybe addiction is an extension of this type of a thing – is it’s so multidisciplinary. I love my huge team. It starts with the engineers who actually manage these very complex radiation machines. Physicists that work integral with them to craft it to the point and help us create the radiation treatment plans we need.

A dosimetrist, who are also a dedicated team to create radiation treatment plans. The therapists. Myself as a clinician, and all the other more traditional clinical members of the team, such as the social workers, nursing, and so forth. But the planning team, the physicists, whether engineers who maintained the machines, help us develop the treatment plans we want.  

Q: One of the first things you said, it was developed at Harvard with physicists. Do you know, how did those physicists, who I assume weren’t working with human bodies – how did they have this idea?

HELEN: Well, they knew the basic principles of regular clinical use radiation therapy. And I can’t say I knew what physics experiments they were working on at that time, but I think they just logically felt like, well, if you got a beam that stops and you can frontload the dose to the end of the beam, that just seems to clinically make sense. And at that time, they reached out to clinicians at MGH at Neurosurgery and Radiation Oncology. They were the pioneers, so I imagine it was challenging to arrange for the first few patients. But when I showed up to MGH in 2001, we were still alternating coverage because that facility was still open.  

We were taking the red line train up to Cambridge because there always had to be a physician onsite overseeing the actual treatment there. But it looked like a physics laboratory.  

Q: I wanted to go back to another thing you had mentioned, which was improving quality of life. Can you talk a little bit about how that fits in? I think sometimes people tend to think, well, you have cancer. If you survived, if you made it through treatment, isn’t that a win?  

HELEN: It’s not good enough. In fact, I would say most patients, most of my patients would not rank survival alone as the number one. It is deeply integrated with quality of life. And most of them would choose a shorter life that’s quality of life rather than to be cured with some miserable side effect. And that has actually been a large focus of my own clinical research, which is trying to find ways to improve tumor control, but to also improve quality of life. So for example, we have a low-grade glioma study – low gliomas are brain tumors that happen in young adults, people in their 20s, 30s, 40s, sometimes older. And radiation is a very good treatment to stop it from growing. So we try to take out as much of it as possible with surgery, but often there's more left behind.

With traditional old radiation, we know when we treat the whole brain, we get neurocognitive deficits. We have a harder time with short-term memory, thinking through things, multitasking, 

We know from other kinds of treatments to the brain, when you're really focusing, you treat really tiny spots in the brain, you don’t have those side effects. So there's a volume component. The more you treat of the brain, the more deficits you get, and the principle of protons where we can just reduce that excess radiation, we’re hopeful that we can really help preserve people’s function, cognition, and quality of life. 

Q: And it strikes me too as you're talking that technology is a big component of what you do. How do you do that? Is it ever intimidating? Do you have to learn new tools often?

HELEN: It can be, but it’s not too much because this goes back to the whole multidisciplinary team. I have brilliant physicists that I work with, dosimetrists, and they really help bridge the gap for us because we work with them. We’ll say, “You know, I wish I could do this.” And then they’ll look into what's going on, or they’ll talk, not infrequently, to vendors out there who want to know what technology do you want us to build? And it’s great to have the physicists intermediate to really speak both languages.  

And what's really neat about our clinical physicists is sometimes they can see things beyond us, meaning we think what we have is good enough, and maybe we could do a little bit better, but then they’ll come up with an idea, like why don’t we make it way better? And it will be beyond what I'm thinking is possible. And I think that’s, again, one of the fun things of working with a multidisciplinary team.

 

Q: Do you have any examples of when something like that has happened?

HELEN: Creating a treatment plan where I'm thinking I want to use a specific technology to treat a patient with brain metastasis, and the physicist will come by and be like, “But you're concerned about dose to this area, reducing dose to this area and maximizing dose to another area. We can do both.” I’ll be focused on one area thinking linearly, we use one technology to develop one thing, and they’ll come back and be like, “Well, why don’t you do both?” There's these other things that we can do, or we can integrate them. We don’t have to do traditional radiation before the recent decade or two. We weren’t able to do the differential clouds of radiation. We would just treat, and it would be roughly the same dose of radiation across the entire area we’re treating.

And then if you wanted to create a different dose, you'd finish one part first, and then you'd focus on the area you wanted to give a little bit more dose to, and it would be a completely different treatment plan patched onto the first one. It just wouldn’t marry together quite as well, and really.

 Q: I had no idea that there were physicists engaged in care in that way.

HELEN: It is, I think, a really rewarding field for people who really enjoy that physical science because there's a lot of research that goes on. I think MGH has one of the largest Medical Physics research department in the country. But we have a lot of physicists who are just focused on wanting to know how to make patient care better.  

Q: I wanted to circle back to something you mentioned previously, this idea of neuromodulation. And as I understand it, it’s taking radiation therapy that has traditionally been used for cancer treatments and applying it a little bit differently. So can you talk about what it is, what it means, how it works?

HELEN: The concept that I have in mind – and I'm really extrapolating forward, that we do this for other non-cancer indications – is that we can change the physiology or the biology of the body. For example, increasingly now, radiation is used for cardiac arrhythmias that are not controlled by other traditional medical or interventional means, where you can actually just change, literally, how that tissue works. And for pain syndromes like trigeminal neuralgia, we can use a high-dose radiation to basically numb that nerve to get rid of the pain, which is lifesaving for people who are in chronic pain that can’t be controlled otherwise. For refractory epilepsy – so, seizure syndromes where you can’t stop – or tremors, being able to provide focus radiation to specific part of the brain to basically dampen down the hyperactivity, I think, is really exciting.

It is similar to what is happening in a neurosurgical world with deep brain stimulation, but I think one of the nice things about radiation is that it’s not invasive, so you don’t need to go to surgery and hopefully achieve maybe similar results. And may be a better alternative to someone who can’t go to surgery. Extrapolating from that, it would be great if we could apply that same principle in addiction medicine to see, is there parts of the brain that we could actually just tone it down? We don’t want to wipe it out, but just tone it down a little bit so that it will give the individual a greater self-control, because that’s what they want: ability to control, ability to prevent relapse. I think would go a long way to integrate with the rest of care that we have.

Q: How are you thinking about – you have what sounds like an incredible idea. How do you go about –

HELEN: Advancing the idea?

 Q: Yeah, and exploring it.

HELEN: Yeah. So I feel like because this particular idea is a little bit more out there than others, I am working with colleagues in the Gordon Center, medical imaging. I think functional imaging’s really important. It’s talking to a lot of people who are already in the field, or people who are specialists in tangential other fields like neuropsychiatry, neurosurgery, and bringing in similar principles that we see with these other syndromes or conditions where we’re doing similar type of neuromodulation.

Q: So the work that you're doing day in and day out, working with patients who have serious prognoses, what is it like working with those patients every day? And is it difficult to maintain your own hope and positivity?

HELEN: It’s extremely rewarding. So the majority of patients I work with are cancer patients. A lot of them I know won’t be cured of their disease. But it’s that much more of a privilege to work with them. If you have a prognosis that’s life limiting, the last thing you want to do is meet more people. You really want to just retract back to your family, your friends, all the things that you love, and you just want to throw out everything that’s not important to you. So needing to meet new people, which is all these new providers in the hospital, I think it’s a privilege for us. It’s an honor for us. It’s a really special, meaningful relationship we build with these persons. And a lot of times, we just don’t know their prognoses also because there's a lot of new, exciting developments and changes across Cancer Center and all of medical care.

So we have lots of folks who have brain metastases who were told they were going to live six months, and now it’s four or five years out and they have no evidence of disease. It’s really exciting. 

But it also means that we have to be that much more careful. Anything we do to factor in that quality of life component. One of the things that’s particular about radiation therapy is there's side effects that happen during treatment that most people recover from. There's side effects that happen well after treatment, months, years later. Those tend to be the neurocognitive deficits or other functional deficits, and those are permanent. So those are things that we have to pay a lot more attention to.

But having these great relationships with patients – they're the ones who teach me. A lot of the things that we do now are uncharted waters. And so when they give me the feedback of how they're feeling or doing, or I see how their tumor is controlled or not, that refines how I continue to treat the next patient forward. And it’s amazing how altruistic people are. They know once they're done the radiation treatment, the reason why they're coming back – a lot of it is education for me, but it’s some symptom management for them also. But they're just happy to help the next person if they can. And it’s really rewarding.

Q: And how do you help patients maintain a positive outlook in the face of these sorts of challenges, whether it’s cancer or addiction?

HELEN: Yeah, so I'm only one person in usually their whole village because it’s a village that takes care of each kind of these patient populations. But you keep the glass half-full because you only get it once. What was striking to me – this was a few years ago – I had a woman who had a brain tumor, and it was not a good prognosis. And I walked in and she just gave me the biggest smile, and she was just chipperish and happy. And she was looking at me. She realized that I wasn’t reflecting that happiness, and she knew the news was bad. And she goes, “Yeah, you know what? I don’t know how much time I have. It could be a month, it could be three months. I know it’s not much more than six. But every day is going to be a great day as long as I have a day.”

And it really puts perspective. You live once. So for all of us, whether we should have a grave diagnosis like this or not, but really just keeping the glass half-full and being there for your patients, being supportive. It’s our primary mission in a way. As much as we want to advance radiation therapy for me, cancer care, killing the tumor, decreasing physical body ailment side effects, ultimately it’s taking care of the human being. And how they feel, I think, is more important than anything else.

Q: Great. Well, thank you so much, Helen.

HELEN: Thank you very much for having me.

Q: If you weren’t a doctor, what would you be?

HELEN: I'm not absolutely sure, but one of them certainly would be having a flower shop. I love flowers and I like designing. 

Q: What's the best decision you ever made?

HELEN: Have kids [laughter].

 Q: What was your first job? 

HELEN: Babysitter. First paid job, working in a library. There was a time when I actually knew the Dewey Decimal System pretty well and I could spit them out if you wanted books on cats and dogs and various things like that. 

Q: What do you consider your superpower to be?

HELEN: Sixth sense of understanding at least some people. Empathy. That’s really what drew me into both oncology and drug addiction. It’s clear to me that that person is hurting and not meaning the words that are coming out of their mouths.

Q: What are you curious about right now?

HELEN: I like to learn about everything. I learn from my children all the time. So for example, my daughter who’s 11 was recently teaching me about the behavioral tendencies of koalas, which are actually quite vicious because these are stuffed animals that decorate my room. 

Q: Thank you so much, Helen.

HELEN: Thank you very much for having me.

Q: It’s been great having you and talking with you today.

HELEN: Thank you.