The Cancer Center’s Story Project is an effort to capture stories from our community of patients, friends, family, clinicians, and staff who have been affected by cancer in some way. This is Amy's Story.
- Amy Corveleyn, MSW is a psychiatric oncology social worker with the Collaborative Care and Community Engagement program. Amy is an advocate for those affected by mental illness who also have a cancer diagnosis.
- "Don’t suffer in silence. If you think that someone you love who has mental illness may also have cancer, or if they’ve been diagnosed with cancer and you feel like mental illness is preventing them from getting the treatment that they need, then reach out."
What do you do here at the Cancer Center?
“I am a social worker with the psychiatric oncology group here at the Cancer Center; I work with Dr. Kelly Irwin in the Collaborative Care and Community Engagement program as the social worker and case worker. I’ve been working at Mass General for almost 12 years. I started by working with the head & neck, lymphoma, and the proton beam groups as an oncology social worker. I did that for about 7 and a half years and then did per diem social work on the medical floors and in the emergency room. Then Dr. Pirl had an opportunity for me to do some community liaison work with the psychiatrists in the Cancer Center so I began helping find therapists and psychiatrists for patients who come to the Cancer Center but can’t come to therapy here because of the distance. They need someone closer to home. Then Dr. Pirl introduced me to Kelly Irwin and that’s how I got into her project. I met with her and I was just completely inspired by her passion, and I really started to look at the research and how much patients’ mental illness affects their cancer diagnosis. I’ve gotten to know some of the patients and their family members and it’s become something that I’m very proud to work on.”
Can you tell us a little more about the project?
“The program is designed to help patients and caregivers who have a severe mental illness and have been diagnosed with cancer. We recently did a pilot study of 30 patients and their caregivers where we looked at proactive psychiatry consult and social work case management. The study included mental illnesses such as schizophrenia, bipolar disorder, and major depression. Basically what we were able to offer patients is a consultation with a psychiatrist at the start of diagnosis, throughout the 12 weeks of our study, and involvement with a social work case manager to help with the collaboration between the community mental health team and the oncology team. This aims to help support patients and family members and refer them to resources. I’m directly involved with this. Now we have a program that’s based on these same principles. We really want to connect patients with severe mental illness with a psychiatric team to give them a better outcome in their disease.”
Are there any stories from this project that you would like to highlight?
“So many. I’ve been so fortunate. I really feel as a social worker there are many times in your career when your growth sort of hits a rut, and you need to figure out if you’re going to try to push yourself a little bit. That’s kind of where I was in my career when I met Kelly. As far as patients, there are so many that I think if we were not involved they wouldn’t have received treatment. That’s truly what the program is about."
"We worked with a woman who was diagnosed in the community with breast cancer, she had the lumpectomy but was not referred to radiation because the team that saw her felt that since she had diabetes and a skin condition, in addition to schizophrenia, that she would not be a candidate for radiation, and radiation is the standard of care for her type of cancer. Her community psychiatrist referred her here and we’re not only able to have her be seen and be a part of our pilot study, which she consented to, but she also consented to having radiation and was able to complete radiation. This is someone who did not receive the standard of care simply because of her mental illness and when she did have the opportunity to get that standard of care, she took it. We needed to work with her a little differently. We needed to work with her group home staff, specifically. We had to figure out ways to get her to come to the hospital; coming to the hospital was not her favorite thing to do. We ended up really having to work with her community mental health team, the outpatient oncology team, and the outpatient psychiatric team to get her through radiation. All it took was a little thinking outside the box and she was able to get through treatment. I think that that’s one of the stories that really sticks with me.”
“We know that 40% of clinical trials eliminate patients with severe mental illness from being allowed even on the trial. You can imagine what a disparity this is that patients are not allowed to find out if they have different options for treatment or to fight their disease simply because they have a biological illness.”
You said earlier that the life expectancy for people with severe mental illness is shorter, can you elaborate?
“Patients with severe mental illness die about 15 to 30 years sooner from cancer. Actually, heart disease is the number one cause of death among patients with severe mental illness but cancer is number two. Many people think it might be suicide or violence or drug abuse but it’s those two health problems that are preventable and treatable. These are patients who are not receiving the same standard of care in their treatment. Often because of their psycho-social situation they can struggle with homelessness, they can be disorganized, they may be isolated, they may not live with family, and they may not be married. The statistics of our study show that all these things can contribute to not following through with treatment or not being given the option of that standard of care.”
“This is just one example, but when I started [working] with Kelly I thought about a patient that I worked with many years ago. This was a gentleman with bipolar disorder who was living in a group home and diagnosed with head and neck cancer, and had a recurrence of cancer. I saw the relationship he had with his mental health worker, and that was someone who I could team with and get to know. This gentleman did the best he could until his disease took over. It was really a good opportunity to see where things went from the community mental health perspective. People in the hospital were kind of shielded from that, but this program and the work that I did with this gentleman many years ago really highlighted the importance of working with the community mental health staff. As an oncology social worker, or surgeon, you’re seeing these patients for a snapshot in their life. For a sliver of time. The community mental health workers, the group home managers, are people who see these patients every day. Sometimes all day, multiple times a day. Even if they might not know the cancer piece, they know this patient much more than I do. So that perspective is so important and with this gentleman it was so crucial. He needed to feel supported where he was living. He did have family that were supportive towards the end of his life, they weren’t involved in his cancer care. His mental health worker came to his cancer visits, came with him to chemo and all of the big visits with the oncologists. And then it was my role to be supportive of him to help him connect to the community health workers. I think that often this is a population that gets kind of lost in the shuffle because they may not follow-up with appointments, they may come to appointments and appear very withdrawn or quiet, it’s hard to connect. I also think they just might need a different style.”
“The pilot study has closed. Now, Dr. Irwin will plan to do a larger trial later this year. It’s not a population that if you put things on them, they’ll be able to do it on their own. It’s just too much. They get very overwhelmed and disorganized at times and even someone with chronic depression gets overwhelmed. I think the average cancer patient without severe mental illness is overwhelmed. For me, it’s been an amazing experience to reconnect to why I became a social worker and really feel like I’m making a difference with patients who are a real healthcare disparity.”
Is the intent to hopefully find out what works best and to roll that out into the hospital?
“Yes, well we already started to do that with the development of the program, and we now receive consults from oncologists and inpatient psychiatry, and they will consult with Dr. Irwin and myself about patients who were admitted to the hospital or patients who are coming from the outpatient setting. Dr. Irwin also does a second opinion service, and the Department of Mental Health consults with her about patients who may be newly diagnosed with cancer, or in need of a diagnosis, and to best see what their treatment plan may be. We’re always looking to bridge patients from the inpatient to the outpatient setting and from the community to the hospital setting.”
What has been the toughest part of this for you?
“I think the toughest thing is when things don’t do my way. I don’t like that. I think healthcare in general and mental healthcare in general are very broken systems. What frustrates me the most is when a patient has a resource but there’s piece of paperwork that’s sitting on someone’s desk and that person is on vacation and now you can’t get what they need. We had a gentleman that all he needed was a sign-off to increase his visiting nurse home visits, and there were months of this piece of paper at the insurance company waiting to be signed off. In the meantime, this man and his wife were completely struggling because he can’t be at home without more help. That in particular makes me a little crazy. Really, it’s about someone checking a box and we can move on with our lives, this man can get what he needs. I think that that’s a big struggle."
"I think sometimes getting patients here is a struggle. You think of Boston being easy to get around when you’re here at the hospital, but the reality is that even if someone lives in Boston, they may live on a different side of the city and getting over here may take them an hour. This can be really hard on patients and caregivers and I think because we are here, it’s sometimes hard for providers to see why that’s difficult. I also think it’s about the lack of resources. We also know that there is a stigma that patients with mental illness face.”
What’s the most positive part of your job?
“I think the most positive part of my job is working with a population where I watched 30 people get treatment and complete treatment. They may have not have had that opportunity if they weren’t involved in the pilot. That’s not everybody in the pilot, some of the people in the pilot were very well supported and would have definitely followed the regimen but that’s not all of this population. I think to be able to see patients complete treatment successfully, to see them come to their 3 month visit and have it extended to a 6 month visit, knowing that their disease is gone. It’s really awesome to be a part of that. It’s a way to know every patient is getting the care they deserve. Every patient deserves this standard of care. I think it’s a great feeling to be involved in something that I think is going to move medical care forward. It is going to help patients who are completely discriminated against.”
Is there anything else you would like to say?
“Don’t suffer in silence. If you think that someone you love who has mental illness may also have cancer, or if they’ve been diagnosed with cancer and you feel like mental illness is preventing them from getting the treatment that they need, then reach out. I would say that to community doctors, to caregivers, to community mental health workers, to patients who may be reading this and feel like they may not be treated correctly by their team. Just call us. Reach out. I think we can help.”
Amy Corveleyn, MSW
Don’t suffer in silence. If you think that someone you love who has mental illness may also have cancer, or if they’ve been diagnosed with cancer and you feel like mental illness is preventing them from getting the treatment that they need, then reach out.
This interview took place on April 5, 2017 and has been edited for clarity.