How To Manage Chronic Pain During Cancer Treatment

Dr. Diane Reidy-Lagunes:

Pain. It's the fifth vital sign. It can be acute or chronic, severe, exhausting, or even debilitating. Acknowledging, assessing, and managing pain can improve quality of life and significantly reduce suffering for our patients, especially those with cancer. But why is treating pain so difficult? Let's talk about it.

Hello, I'm Dr. Diane Reidy-Lagunes from Memorial Sloan Kettering Cancer Center, and welcome to Cancer Straight Talk. We're bringing together national experts and patients fighting these diseases to have evidence-based conversations. Our mission is to empower you and your family members to make the right decisions and live happier, healthier lives. For more information on the topics discussed here, or to send us your questions, please visit us at mskcc.org/podcasts.

Today, I am so pleased to be joined by Dr. Neal Rakesh and Dr. Anna DeForest. Neal is a physiatrist – which is a doctor that specializes in physical medicine and rehabilitation – and a pain medicine physician. He specializes in interventional cancer pain management and works in the Department of Anesthesia and Critical Care here at MSK. With an educational background in biomedical engineering, he has a strong interest in advancing the bridge between medicine and technology so that we can control patients’ pain more effectively. He also hosts a pain medicine podcast known as The OuchCast.

Anna is a neurologist here at MSK specializing in pain and symptom management, as well as palliative and supportive care. She has a strong interest in narrative medicine, which improves clinical care through the art of listening and observing to better understand a patient's story beyond just a medical history. She is also a writer and author of the novel, "A History of Present Illness." Neal and Anna, thank you so much for joining me and welcome to the show.

Dr. Neal Rakesh:

Thanks for having us.

Anna DeForest:

Thanks for having us.

Dr. Diane Reidy-Lagunes:

So great to have you both. Neal, can you give us some context of how big an issue pain management is for our cancer patients?

Dr. Neal Rakesh:

Yeah definitely. I read a review that was done in the Journal of Pain and Symptom Management, and it said that about all patients that have cancer, about 33% of them are going to end up having some form of cancer pain. When you get someone that's going through chemo or radiation, that jumps up. And then in the more advanced metastatic, and the patients that end up having like kind of very terminal diseases, this is 66% of the patients. And that's like two thirds of the patients that we're seeing. So it's a large section of our patients that are going to experience this vast spectrum of pain.

Dr. Diane Reidy-Lagunes:

Absolutely. Let’s hear from Sharon. She describes what it feels like to be with unimaginable pain.

Sharon:

My name is Sharon. I was diagnosed with breast cancer back in 2001. Fifteen years later I was diagnosed with breast cancer again, and they had to do a complete mastectomy. When I had my surgery for the reconstruction, I was never the same after that. It was such excruciating pain that I couldn't sleep, I couldn't think, I couldn't breathe, I couldn't function. You're at a point where you feel like you just want to give up because there's times where you find you can't even get out of bed. You don't even know how you're going to start your day. You don't know how you're going to start your morning. And I urge anybody that is going through even half of what I went through to seek the help that they need. My pain comes and it goes, but my quality of life right now is manageable, thank God, due to Dr. Rakesh. I know that when I leave his office that I'm going to be okay. He has made me better.

Dr. Diane Reidy-Lagunes:

Neal, we know patients sometimes have a hard time feeling like they're heard or understood in terms of the amount of pain that they have. When a patient like Sharon comes to you, how do you quantify and assess their level of pain to help them?

Dr. Neal Rakesh:

I look at it in multiple ways. I think everyone looks at pain with kind of the classic thing: the VA scale or the visual analog scale, which is a 0 to 10 scale. And the way I take this scale is I say that whatever someone says, it's a control to themselves. I say if they say 10 today, and they say 6 tomorrow after something that I've done, it gives me an adequate way to control to themselves. I don't compare it to anyone else. If someone says 15 to me, that's their number, and then I compare their next number to themselves. But then equally as important, I like to know what their pain feels like because different types of pain feel differently. Usually the descriptions really give me an indication of what's going on.

But I've found that the history and the physical exam give me so much information. There are specific referral patterns. When someone has pain that's coming from the shoulder joint, it looks very different than pain that comes from radiation associated with muscle tissue damage. And so being able to identify that through the history of when someone got it and what their physical exam shows, and then correlate that to the imaging they get – CAT scans, PET scans, MRIs – and it may be like five or six things. And just teasing them apart and breaking them into layers and working with the patient to kind of figure each of those things out is my goal. That's how I figure it out.

Dr. Diane Reidy-Lagunes:

Anna, any additional thoughts to that?

Dr. Anna DeForest:

I think the most important thing about the pain scale is to note that it's not universal. Working in academic medicine, we don't just do this work, but we train other people to do it. There'll be lots of times when your trainee meets a patient you haven't seen yet and comes to tell you about the patient's pain and reports, “They say it's 10 out of 10, but they're on their phone,” or “They say it's 10 out of 10, but their voice sounds normal,” or “They're moving around in the bed,” or they'll give you some reason that they don't believe the patient's report. And this sort of means they have an idea in their head about what a patient with 10 out of 10 pain looks like, or sounds like, or acts like, and this particular patient just isn't meeting the mark.

But if you look at the data, there's some really disturbing trends in the kinds of patients that doctors don't believe. And these patients are black and brown. They're women. They're from different socioeconomic strata than a lot of the doctors. Trends like this amount to what's called systemic bias. So I tell that to my trainees. I tell them to keep tabs on that as they train. Do the people I don't believe look like me? Do they talk the way I think I would talk in that situation? And primarily I train them to believe their patients.

You know, I was actually taught on the wards in medical school that you could tell a patient was exaggerating their pain if they used a lot of words to describe it, in metaphors or examples from their lives. And now studies have shown that actually the people more likely to use more words to describe their pain in the context of their lives are women. So I was actually trained to discredit women's reports of pain. And that wasn't back in the day, you know, this was like less than 10 years ago. This was basically now.

Dr. Diane Reidy-Lagunes:

We judge without realizing sometimes, but you're absolutely right. Let's actually get into the management of that pain. Neal, let's start off. Once you do assess that pain, how do you decide which medications and or treatments or interventions are best for that patient.

Dr. Neal Rakesh:

It depends on how long they've been experiencing the pain. I always think of it as a spectrum. There's always the conservative aspect of things that are kind of the very simple things like PT, OT, acupuncture, even medical marijuana, massage. Those are in some ways the easiest conservative things.

Then you start getting to the medications, and they can range in spectrum from the lower side-effect profile to obviously the higher and the more dangerous medications that require a little bit more effort and careful watching of what you're doing. That's kind of the first layer of it.

And then there's a whole slew of interventions that can kind of compound on top of that. So the very basic of things that I'll do is injections. And anyone that's ever heard of an injection or ever been around anything that had to do with pain, they've probably heard of epidurals. And it's not something that we only use just for patients that are delivering babies. People, if they have a cancer that's around one of the nerves in their spine, they can have pain that shoots down their leg. And a simple fix for that, or a simple kind of palliation of some of their pain, is an epidural, which could relieve any of the inflammation or irritation that's around those nerves.

It gets exponentially more kind of invasive as you go through that spectrum. There are things where we can kill nerves. And then they are implanted technologies and devices like stimulators or pain pumps. And there are things that we do with our neurosurgical colleagues that can help to significantly alleviate pain.

But this whole spectrum of things is a discussion with the patient. I oftentimes say whatever the patient's there for, if that therapy vibes with them, that's how I think through it. I try to figure out where they are in their journey. If it's something that they're like, “I haven't tried anything. I want to do the most conservative thing. I want to do PT. I want to work this out,” and then see where they get. Or someone has been dealing with this for years and they say, “I've tried everything. I need something more interventional.” It's oftentimes a decision with the patient and that's how I decide. I tell them, “These are the five options that I have for you based on the etiology or the reason for your pain. It's your choice where you want to start. And I'll tell you the side effects, the risks, and you can kind of figure that out on your own, but I'll be your consultant.”

Dr. Diane Reidy-Lagunes:

And yet in light of the opioid crisis, people have a genuine fear of pain meds. So how does this play into treating patients with and without cancer?

Dr. Neal Rakesh:

So, I kind of think of it this way – I actually like it when patients come to me and they're afraid of it. And I say that because these medications are dangerous when they're not used properly, and so I always tell them there are two key things when it comes to pain medications:

One, the indication for opioids in my mind is cancer-based pain. If someone is in the throes of cancer, that is the premier indication that I see, in my mind, for an opioid. But the other thing is that these are meant to be used as a means to treat pain, not prevent the anticipation of pain. And when people understand that the goal is not 0 out of 10 pain – it's not to be sedated and kind of out entirely, it's more of a goal of functionality and quality of life – I think that's a good way to put it in perspective for patients.

And I always tell them my goal is to use the least amount of opioids, to use a multimodal approach. If you use a bunch of different medications at lower dosages, you tend not to reach the side effects that you get at those max dosages. And that's kind of how I take them through that fear of opioids. And I do like that because they tend to want to get off. When they no longer have pain, they come off very, very easily.

Dr. Diane Reidy-Lagunes:

This is a tough one, but what about the patients who have real pain, need us for pain management, but are recovering from substance use disorders? We have patients like this who are truly in pain and need us, but they're worried because they have this history. How do you manage a patient like that?

Dr. Anna DeForest:

We have a few different tools just for screening patients for potential risk of misuse of opioids, which will catch patients who will disclose the substance use disorder history, as well as patients who don't have one but are at high risk of having one, which includes people who have first degree relatives who have alcoholism, people of certain age groups, people with really common psychiatric issues like depression or ADHD are at increased risk of opioid misuse and we screen for that. But substance use disorders are incredibly common in our country at this time. One in seven adult Americans has a substance use disorder. A lot of those people may end up getting a serious illness like cancer and even needing opioid pain medications to manage their pain. We commonly manage pain in patients who have these issues.

So the cornerstone of safe and equitable care for patients with substance use disorder is mostly relational. They need to have clinicians with whom they can have very open communication. And they need to feel safe that even if they tell us that their relationship to the substance is becoming problematic, we're not going to take away medication that they need to treat pain that's really quite unbearable, but we'll just prescribe it in different ways. The intervention is really to support patients to know that they can communicate with us openly, that we will meet them where they are, and that will help them to stay safe as they navigate serious illness.

Dr. Diane Reidy-Lagunes:

Yeah, I think you're absolutely right. And I will say, even in our patients that may have a substance abuse history, but even in our patients that don't, there's a certain stigma. I mean, how many times do we have patients that have gone from pharmacy to pharmacy because they can't find the medication? It almost feels like, for our patients, that they're doing something wrong, that they require these important medications. So our society doesn't really make it easy.

Dr. Anna DeForest:

That's the absolute truth. I've had so many patients who have no problematic use history talking about feeling so marginalized by their inability to fill their prescriptions in a pharmacy.

Dr. Diane Reidy-Lagunes:

When you're dealing with this chronic persistent pain, it affects so much more than just the physical aspects of life. It clearly takes a mental toll. So let's hear from Angelica, who shares how living with pain has affected her personally.

Angelica:

At the age of 29, I was diagnosed with stage four adrenal cortical carcinoma, which is a very rare cancer. Several things contributed to my pain. First were the cancerous tumors, which produced a high-level cortisol, causing my bones to degenerate. This led to my spine becoming weak and fracturing. The pain impacts the quality of my life by affecting my ability to sleep. It affects my ability to walk. It affects my ability to do the things that I used to love, which are hiking, hot yoga, and in general, physical exercise. The emotional pain from not being able to do normal activities is equally, if not even more horrible, than the physical pain. I find relief – I've tried reading, talking to friends on the phone, getting back into art, singing, and playing guitar. What makes this hard is seeing the rest of the world functioning normally – seeing people getting married and having children – while I sit in bed with one goal, which is to fight for my life.

Dr. Diane Reidy-Lagunes:

Anna, how would you approach the management of a patient like Angelica, particularly both the physical and the psychological aspects that she's describing?

Dr. Anna DeForest:

In palliative care, we talk a lot about a concept of total pain, which is a phrase that was coined by Cecil Lee Saunders in the 1960s recognizing that pain and serious illness is not just somatic pain – pain in the body – but it's a combination of physical and social and spiritual and emotional pain, and these elements can't really be separated out.

If you have uncontrolled pain that makes it so that you can't live your life performing the roles that make your life meaningful – perhaps this is work or being a parent or a friend – this causes real existential pain. And it means in order for us to address your pain, we can address the physical aspect with pain medications or nerve blocks like we've been talking about, but we also really have to address these other concerns because the relationship between existential pain and somatic pain is reciprocal. You can't really fix one without addressing the other. When you enter a palliative care setting, you don't tend to just meet a clinician. You meet a clinician plus a social worker, or a clinician plus a chaplain, sometimes a psychologist or an art therapist, people who are prepared to meet you as a whole person.

Dr. Diane Reidy-Lagunes:

Yeah, absolutely. I just think that's so critically important to understand that there's this physical pain that we absolutely have to address, but underlying that – equally if not more important – are all the repercussions of that, including emotional and spiritual pain.

So switching gears, there's been a lot of recent headlines about the healing power of psychedelics and how they may be helpful for the emotional pain that happens. We've talked already about how the physical pain is often linked to that emotional pain. But Anna, can you talk about the use of psychedelics, and potentially as it may relate to our patients with cancer?

Dr. Anna DeForest:

This is a topic I get really excited about because I'm all for creative ways of addressing the non- somatic aspects of pain and serious illness, and psychedelics are really emerging in the space in a really exciting way. There are many different drugs that can provide these effects besides LSD, including psilocybin, which is the active compound in magic mushrooms; DMT, which is the active compound in ayahuasca; and mescalin, which is found in peyote. All of these are very serotonergic drugs that cause intense hallucinations. These drugs have been used for thousands of years in their natural formulations for social, religious rituals and mystical experiences. And now they're being studied as “interventions”: not everyday medicine, but a treatment that you would undergo once with some therapy before and after to kind of prepare you and then synthesize. The research is showing that this intervention, for example, in a population of cancer patients can treat depression and anxiety with an efficacy that's really astounding. In one of Steven Ross's studies from NYU, 60% to 80% of the patients from a single dose of psilocybin had significant reductions in depression and anxiety, compared to the success rate and SSRI in this population, which is close to 40% of basically placebo.

Dr. Diane Reidy-Lagunes:

That's amazing. Absolutely amazing. Do we know how long the effect of one dose lasts?

Dr. Anna DeForest:

I've seen a lot of studies that show the effect lasting outwards of six months. It's interesting because the mechanism of this change is not really well understood. It's posited that it's some sort of surge of neuroplasticity caused by the serotonergic component of the drug along with a treatment effect from the psychedelic experience itself, experiencing these mystic hallucinations. Some of Roland Griffith's studies have supported this by showing that the more intense your mystical experience is, as self-reported, the better the treatment effect.

Dr. Diane Reidy-Lagunes:

Amazing. Any concerns about the drug, in terms of who would probably be not the ideal candidate for such a type of therapy?

Dr. Anna DeForest:

Preliminary studies have excluded a lot of different kinds of neurologic and psychiatric illnesses. Psychotic illnesses and schizophrenias are a pretty big contraindication to inducing intense hallucinations. Also these are still schedule-one drugs, so they're very illegal for now. A lot of this is changing, but I have a lot of patients who are interested in this and ask me how they might have access to these treatments. And the truth is that if you can find a recruiting research study, you can try these in a safe environment now.

Dr. Diane Reidy-Lagunes:

Yeah, absolutely. It could be an incredibly powerful tool. For better or for worse, the reality is that pain plays a role in many people's lives. Let's hear more from Angelica, who shares how living with pain, both on the good and the bad days, has shifted her outlook on life.

Angelica:

About six months after my diagnosis, the pain became uncontrollable to the point I had to be hospitalized for 51 days. In the hospital, things kept getting worse and my body started to give out. It took some time with very high doses of pain medicine to finally start making progress. Once I started to walk again, within a week I was home, and eventually, while working with my pain management team, I got to the point where I required almost zero pain medicine. Being able to walk upstairs and play dominoes with my grandparents is a true blessing. I live by the ocean, so even though it’s cold outside, I sometimes walk to the bay and dip my toes in the sand, which is something so small that brings me so much happiness. My sense of gratitude for life has gone up tremendously. I'm still fighting my cancer and treatment, but the issues that brought me to the hospital are behind me.

Dr. Diane Reidy-Lagunes:

Angelica says it beautifully. It's the small things in life that matter most. Anna, any final thoughts from you?

Dr. Anna DeForest:

Oh, that's such an astonishing story and hearing her reflect on it, I think of how innovative pain management may have really saved her life.

Dr. Diane Reidy-Lagunes:

Yeah. Neal, any final thoughts from you?

Dr. Neal Rakesh:

My favorite part about Memorial Sloan Kettering is the multi-collaborative approach that we take to a lot of the different patients we see. We're always talking to each other. We're always trying to figure out strategies. I think that that environment that we have is the reason why we're able to do so well for our patients. And I think, frankly, that's why patients come to us from around the world. Hopefully, that's kind of what people get from learning about this.

Dr. Diane Reidy-Lagunes:

That's right. They are the reason why we do what we do. So Anna, Neal, thank you so much for joining us today and sharing your insights.

Dr. Neal Rakesh:

Thank you.

Dr. Anna DeForest:

Thank you so much.

Dr. Diane Reidy-Lagunes:

It’s really great to have you. Thank you for listening to Cancer Straight Talk from Memorial Sloan Kettering Cancer Center. For more information or to send us any questions you may have, please visit us at mskcc.org/podcasts. Help others find this helpful resource by rating and reviewing this podcast at Apple Podcasts or wherever you listen. Any products mentioned on the show are not official endorsements by Memorial Sloan Kettering. These episodes are for you but are not intended to be a medical substitute. Please remember to consult your doctor with any questions you have regarding medical conditions. I'm Dr. Diane Reidy-Lagunes. Onward and upward.