Helping a Loved One With Substance Use Disorder and Cancer
Addiction is a disease. Like other diseases, it can be caused by a combination of biological, environmental, psychological, and behavioral factors.
And, as with other diseases, it can occur with, or be triggered by, other diseases and disease treatments.
Helen A. Shih, MD, MS, MPH, FASTRO, is a Mass General Cancer Center radiation oncologist who has sought solutions to the addiction crisis. As the medical director of the Mass General Cancer Center Proton Therapy Centers, she has worked to better understand the struggles of patients diagnosed with cancer and substance use disorders (SUDs).
In this interview, Dr. Shih discusses the unique challenges these patients face, and shares advice for supporting loved ones who may be going through similar crises.
Q: What draws you to work with cancer patients who struggle with addiction?
Shih: People often ask me why I’m interested in addiction. It’s not so much that I was interested in addiction. I was minding my own business as a radiation oncologist, but there was an unmet need that was directly impacting my patients.
About 10 years ago, I met a young patient with cancer that would be fatal if left untreated. But it was highly curable. In the brain tumor world, we don’t see that so much.
My patient struggled with substance use disorder. Heroin specifically. And I don’t think the initial health care providers understood what they were dealing with because he was unconscious coming in and whisked to the operating room for the large brain tumor. There was no opportunity to understand his baseline cognitive status or active drug addiction. In the days after surgery, he exhibited a lot of dysregulated behavior — ripping out his IV, swearing, being disruptive — that wasn’t a reflection of who he was as a human being and how he typically treated people. He was disoriented and in pain.
Getting him through treatment was extremely hard, mostly because none of us knew what we were doing at the time. It was before we knew what to do for pain management in these cases. We traditionally used opioids for cancer pain because the surgery, the disease, and/or the radiation caused real pain. But what if a patient was addicted to opioids?
Q: How did the pandemic impact life for people with SUD and cancer?
Shih: Unfortunately, I think it really had a negative impact. That’s because getting into recovery really requires a village of people connecting with each other. If you don’t have that support, you are much more likely to succumb to despair and giving up.
In the pandemic, there was a lot of human connection lost. Even things like 12-step meetings. Many of them were banned because they were in the church cellars or, for example, conference spaces donated by places like Mass General.
I believe many patients [with cancer] went undiagnosed for extended periods of time because they were not presenting for medical care until later stage disease when symptoms worsened. Being able to stay connected to care was also hard, because we didn't have the infrastructure or resources to chase after folks if they didn’t show up.
Q: What is the Substance Use Disorder Tumor Board? How did it transform care for patients with SUD and cancer?
Shih: The Substance Use Disorder (SUD) Tumor Board came together in the Mass General Cancer Center. A tumor board is a group of doctors and other health care providers that meets regularly to determine the best possible cancer treatment and develop a care plan for a patient.
In the Cancer Center SUD Tumor Board, like other tumor boards, we were specifically trying to find the best care for people who have not just cancer and possible needs for surgery, chemotherapy, and/or radiation therapy. In addition to that, we plan to manage their SUD as well as any pain that can be associated with these treatments or from their disease. Sometimes, they already had opioid use disorder and we talked about how to make sure they were also getting treatment for that.
The board wasn’t all physicians. Mostly, it was nurses — they’re the ones who really work day-to-day with patients. These were advanced practice providers, meaning physician assistants and nurse practitioners, also nurses, and social workers. Attendees would bring forth cases and sometimes say, “We have this individual. They have cancer and they need this specific treatment. They’re not coming in,” or “They’re coming in and asking for medication and we aren’t sure what to do,” or “They’re coming in intoxicated. How do we deal with it?” At the time, we didn’t have a system to deal with these challenging issues.
The Substance Use Disorder Tumor Board disbanded around the time the COVID-19 pandemic started, and it really hasn’t had a need to come back together because we’ve created a pathway.
One thing we now know is that social workers are imperative. They become the point people. This just wasn’t recognized before — the pathways didn’t exist before for them to come in and triage an individual. But they’re the people who make decisions like, “I can counsel you. That is in my capacity for me to address versus need for medical therapy that is going to require additional assistance.”
Beyond that, the social workers are also well connected with the Substance Use Disorder Initiative at Mass General. They might be pulling in people from addiction medicine or psychiatry for support. But now everybody knows each other and what they can contribute.
Thanks to the support provided by social services and the Substance Use Disorder Initiative, clinicians have been able to more easily follow through with assisting with addiction and addiction treatment at large, both as a treatable health condition and through the lens of the Cancer Center.
Q: What advice would you give someone supporting a loved one with SUD and cancer?
Shih: I've been approached by a lot of siblings and a lot of parents feeling helpless to support their children who are affected with both SUD and cancer. I don't know how much assistance these suggestions are because at the end of the day, the pain is just so real for them, but I do try to just keep reinforcing a few tips:
Remember that your loved one is not in their right state of mind. You know the child you raised and love. This isn’t your child’s personality speaking and acting. They have a health condition. Try to separate behavior related to their illness from them as a person.
Remember that there will be breaks in the darkness. It's like clouds: It's mostly a cloudy day, but there'll be breaks when the sun and a few rays shine through. The sun will come through. There is hope and most people with addiction recover. Being present to capture those break in the clouds is invaluable as they are remembered by the those affected by the disease of addiction.
Let your loved ones know that you’re there. It won’t work for everyone, but for many people, it's just letting them know that you're there. You love them. It's unconditional love, unconditional support. Repetition and really be there.
Get some help for how to support your loved one. Families can get education on how to best support a loved with addiction. The CRAFT model is a therapeutic intervention that trains families on how to interact with their loved one in a way that helps. The Mass General Addiction Recovery Management Service is skilled at this type of support for families.
Addiction is a treatable health condition, yet there’s still a large stigma attached to it. I think education is the first step. Then, I think we have to be resilient as a village with unconditional love and support.
