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In Conversation: Interview With Rob Caruano, Advocacy Chair, New York City Affiliate
New York City Advocacy Chair and survivor Robert Caruano spoke with Community Engagement Coordinator Paula Mukherjee about receiving a pancreatic cancer diagnosis while working in oncology advocacy. This interview has been edited for clarity and length.
Paula: How did you first get involved with PanCAN?
Rob: Before I was officially diagnosed, I started searching for information about pancreatic cancer. My day job is working as an oncology advocacy person, so my natural inclination was to find the right advocacy group. PanCAN was the right group for me. I got information online and I reached out to PanCAN Patient Services. I was particularly interested in nutritional information because I was having difficulty eating, so that was very helpful. I knew that I wanted to get involved as a volunteer at some point after I felt well enough to do it.
PanCAN PurpleStride in 2022 was about two weeks after I came out of surgery, so I was not up for participating in person. I finished chemo in November and reached out to staff partner Alex Rappoport in the interim. I wanted to make sure that I got involved with the organization and found the right way to volunteer in the future. I gravitated to the advocacy role. I think that's where I can have the greatest impact in moving the needle.
Paula: This was before you were officially diagnosed. Were you having symptoms?
Rob: I had one symptom that, thankfully, I did not ignore. I had a really bad pain in what I thought was my stomach. It was pancreatitis, but I didn't know that at the time. I woke up in the middle of the night in pain and went to urgent care the next morning. They turned me away because they were beyond capacity. It was the height of the Omicron variant of Covid, and they could only deal with Covid cases. I live in New York City, so the concept of not being able to get help was weird because that's not something we're used to here. I went back home. It was very, very scary.
I scheduled an appointment for several days later with a doctor I had never met before. It was the first one I could get online. He said that it was probably a gallstone, which I understand because that's the main cause of pancreatitis. He recommended an ultrasound just to be safe. The ultrasound showed some concerning signs and my doctor recommended that I see a GI doctor to get an MRI and investigate further. However, I had to argue and advocate for myself with the GI doctor to get an MRI because he did not see any purpose in doing it. He thought it was a standard gallbladder case and wanted to remove my gallbladder.
I had to argue and argue. He ultimately ordered the MRI on the condition that I agreed to be scheduled for gallbladder surgery, which I did. The MRI scan showed a mass in my pancreas. The same doctor had to call me back and tell me. He realized what a huge mistake he had made.
The point of that is to say that there were many, many tests over a very long period of time. It was almost four months from symptom to surgery, which was terrifying because I was afraid it was going to spread. I was getting as much information as possible before I even had the official diagnosis because I could tell where it was all heading.
Paula: You mentioned your work in oncology advocacy. I'd love to hear more about your career.
Rob: I started my career in advocacy in Washington D.C., although at the time I wasn't doing it for health, I was doing it for education. I started to learn how Congress works, which is why I was drawn to this particular role as a volunteer.
Most of my career was in communications. I spent many years doing public health communications for the Centers for Disease Control and other public health institutions and some pharmaceutical companies, and also working in advocacy for a variety of organizations. I loved the advocacy work and it's what I wanted to focus on full-time.
When the opportunity came along to do that in-house for a pharmaceutical company, I was really excited. My role is to work with groups like PanCAN but in different areas of cancer. I learn about the patient experience and where there are areas of unmet need. I amplify the patient voice internally through input on clinical trial protocols and disease awareness campaigns. My role runs the full gamut depending on where a particular treatment that we're investigating is in its life cycle. At the end of the day, it's about bridging the patient community with the company objectives and looking for the middle ground where we can support the community and do something that also makes sense from a business perspective.
Paula: Are there certain diseases you focus on?
Rob: I focus primarily on lung cancer and skin cancer.
Paula: What are some of the differences that you see across patient advocacy organizations like PanCAN?
Rob: A lot of groups have more staff than PanCAN and many of them don't have an affiliate structure. The fact that PanCAN’s affiliate structure is primarily volunteer-driven is really impressive. There are a few groups who have that kind of setup, but PanCAN is such a volunteer-forward organization - more so than most.
Paula: How has your career shaped your own patient experience?
Rob: It was very helpful to have had some work experience in oncology because I understood a lot of the basics. I knew what biomarker testing was, I knew the procedures that you follow and I knew where to go to see what the standard of care was going to be like. There was a lot of information I already had, which was very helpful for even just reading my medical reports.
From a professional point of view, though, I work in many areas of cancer, but pancreatic cancer is not one of them. I didn't even know where the pancreas was. I really knew nothing about the pancreas or pancreatic cancer other than it was one of the types of cancer you really don't want to get because of the mortality rate. It was helpful to have the background, but I was still starting from scratch like everyone else.
Paula: What are your advocacy goals?
Rob: I want to build relationships with my own Representatives’ offices and those of the Senators for New York. I've started that process through the outreach for the “Dear Colleague” letters last month. My main goal for this year is to expand and broaden the volunteer members of the Advocacy Committee so that we have representation for the congressional districts with members of Congress who sit on the congressional committees that make funding and key policy decisions. I want to broaden our membership, strengthen relationships and get to know the Advocacy Committee better.
Paula: The New York City Affiliate covers one of our largest markets in terms of population. That presents challenges as well as new opportunities for advocacy. What challenges have you faced in your role?
Rob: I didn't realize the full geographic scope of the New York City Affiliate; the name is a bit of a misnomer. It's not just New York City. It’s all of New York City, Long Island, and several counties in southern New York. It's 17 congressional districts, which was a bit of a surprise to me. It's a very large scope and those areas vary tremendously in terms of population, demographics, and representation in Congress. That is why I'm looking to expand our membership at the moment. We have several committee members where I am, in one part of Manhattan, and we have a couple on Long Island, but we really need to broaden our geographic representation across those 17 areas. It's really important that the committee reflects the diversity of the districts.
One of the challenges is that two of our members within our scope are members of congressional leadership: Chuck Schumer (Senate Majority Leader) and Hakeem Jeffries (House Minority Leader). It seems like that would help us, but in some ways it doesn't because they need to keep the big picture in mind. For instance, they won't sign Dear Colleague letters because it's not something that they can do as part of leadership, particularly when they're both Democrats and we have a Democratic administration. That can be challenging because you can't fully utilize the power of their leadership roles.
Paula: What new opportunities do you see for advocacy?
Rob: There's a lot of opportunity to grow the Advocacy Committee and to reach members of Congress that we haven't yet met. There are some new members who have just joined Congress.
Paula: I saw that your PurpleStride team, Rob’s Rooters, did an amazing job with fundraising. You raised over $8,000!
Rob: My husband led the charge on fundraising. He did a really great job. I was surprised and touched by the response. Our original goal was $1500 and we thought that was ambitious. We kept increasing our goal. The fact that we ended up with over $8,000 was really amazing.
Paula: It sounds like you have a great support system.
Rob: Our friends, family and colleagues have been really, really supportive.
Paula: As you mentioned, we're always looking for new volunteers. Why should people who have been affected by pancreatic cancer consider becoming PanCAN volunteers?
Rob: It's the best way to make a difference. Things have to change.
I was very fortunate to have been diagnosed early and have surgery. I know from the other areas of advocacy that I work in: you need more survivors. You need more people who can speak up. The only way we're going to change things is to develop more treatment options and better methods of early detection. It's shocking to me, given the work that I do in other areas of cancer, that we have very few treatment options beyond chemotherapy. That's not the case for almost every other part of oncology. I gravitated to advocacy because federal research funding is key to changing that.
I was really struck at PurpleStride when they called the survivors up to the stage. I think there were six of us, which really took even me by surprise. There weren’t more of us out there because we need better detection and treatment. There's just all there is to it.
Paula: Thank you so much for your time. I'm so glad that you're doing well and that we have you on board as a volunteer.
Rob: I feel like I survived this for a reason and I really want to do what I can to make a difference and make things better for those who follow. PanCAN’s a great way for me to do that.
Please feel free to contact Rob Caruano (rcaruano@pancanvolunteer.org) or Paula Mukherjee (pmukherjee@pancan.org) with any questions.
Paula: How did you first get involved with PanCAN?
Rob: Before I was officially diagnosed, I started searching for information about pancreatic cancer. My day job is working as an oncology advocacy person, so my natural inclination was to find the right advocacy group. PanCAN was the right group for me. I got information online and I reached out to PanCAN Patient Services. I was particularly interested in nutritional information because I was having difficulty eating, so that was very helpful. I knew that I wanted to get involved as a volunteer at some point after I felt well enough to do it.
PanCAN PurpleStride in 2022 was about two weeks after I came out of surgery, so I was not up for participating in person. I finished chemo in November and reached out to staff partner Alex Rappoport in the interim. I wanted to make sure that I got involved with the organization and found the right way to volunteer in the future. I gravitated to the advocacy role. I think that's where I can have the greatest impact in moving the needle.
Paula: This was before you were officially diagnosed. Were you having symptoms?
Rob: I had one symptom that, thankfully, I did not ignore. I had a really bad pain in what I thought was my stomach. It was pancreatitis, but I didn't know that at the time. I woke up in the middle of the night in pain and went to urgent care the next morning. They turned me away because they were beyond capacity. It was the height of the Omicron variant of Covid, and they could only deal with Covid cases. I live in New York City, so the concept of not being able to get help was weird because that's not something we're used to here. I went back home. It was very, very scary.
I scheduled an appointment for several days later with a doctor I had never met before. It was the first one I could get online. He said that it was probably a gallstone, which I understand because that's the main cause of pancreatitis. He recommended an ultrasound just to be safe. The ultrasound showed some concerning signs and my doctor recommended that I see a GI doctor to get an MRI and investigate further. However, I had to argue and advocate for myself with the GI doctor to get an MRI because he did not see any purpose in doing it. He thought it was a standard gallbladder case and wanted to remove my gallbladder.
I had to argue and argue. He ultimately ordered the MRI on the condition that I agreed to be scheduled for gallbladder surgery, which I did. The MRI scan showed a mass in my pancreas. The same doctor had to call me back and tell me. He realized what a huge mistake he had made.
The point of that is to say that there were many, many tests over a very long period of time. It was almost four months from symptom to surgery, which was terrifying because I was afraid it was going to spread. I was getting as much information as possible before I even had the official diagnosis because I could tell where it was all heading.
Paula: You mentioned your work in oncology advocacy. I'd love to hear more about your career.
Rob: I started my career in advocacy in Washington D.C., although at the time I wasn't doing it for health, I was doing it for education. I started to learn how Congress works, which is why I was drawn to this particular role as a volunteer.
Most of my career was in communications. I spent many years doing public health communications for the Centers for Disease Control and other public health institutions and some pharmaceutical companies, and also working in advocacy for a variety of organizations. I loved the advocacy work and it's what I wanted to focus on full-time.
When the opportunity came along to do that in-house for a pharmaceutical company, I was really excited. My role is to work with groups like PanCAN but in different areas of cancer. I learn about the patient experience and where there are areas of unmet need. I amplify the patient voice internally through input on clinical trial protocols and disease awareness campaigns. My role runs the full gamut depending on where a particular treatment that we're investigating is in its life cycle. At the end of the day, it's about bridging the patient community with the company objectives and looking for the middle ground where we can support the community and do something that also makes sense from a business perspective.
Paula: Are there certain diseases you focus on?
Rob: I focus primarily on lung cancer and skin cancer.
Paula: What are some of the differences that you see across patient advocacy organizations like PanCAN?
Rob: A lot of groups have more staff than PanCAN and many of them don't have an affiliate structure. The fact that PanCAN’s affiliate structure is primarily volunteer-driven is really impressive. There are a few groups who have that kind of setup, but PanCAN is such a volunteer-forward organization - more so than most.
Paula: How has your career shaped your own patient experience?
Rob: It was very helpful to have had some work experience in oncology because I understood a lot of the basics. I knew what biomarker testing was, I knew the procedures that you follow and I knew where to go to see what the standard of care was going to be like. There was a lot of information I already had, which was very helpful for even just reading my medical reports.
From a professional point of view, though, I work in many areas of cancer, but pancreatic cancer is not one of them. I didn't even know where the pancreas was. I really knew nothing about the pancreas or pancreatic cancer other than it was one of the types of cancer you really don't want to get because of the mortality rate. It was helpful to have the background, but I was still starting from scratch like everyone else.
Paula: What are your advocacy goals?
Rob: I want to build relationships with my own Representatives’ offices and those of the Senators for New York. I've started that process through the outreach for the “Dear Colleague” letters last month. My main goal for this year is to expand and broaden the volunteer members of the Advocacy Committee so that we have representation for the congressional districts with members of Congress who sit on the congressional committees that make funding and key policy decisions. I want to broaden our membership, strengthen relationships and get to know the Advocacy Committee better.
Paula: The New York City Affiliate covers one of our largest markets in terms of population. That presents challenges as well as new opportunities for advocacy. What challenges have you faced in your role?
Rob: I didn't realize the full geographic scope of the New York City Affiliate; the name is a bit of a misnomer. It's not just New York City. It’s all of New York City, Long Island, and several counties in southern New York. It's 17 congressional districts, which was a bit of a surprise to me. It's a very large scope and those areas vary tremendously in terms of population, demographics, and representation in Congress. That is why I'm looking to expand our membership at the moment. We have several committee members where I am, in one part of Manhattan, and we have a couple on Long Island, but we really need to broaden our geographic representation across those 17 areas. It's really important that the committee reflects the diversity of the districts.
One of the challenges is that two of our members within our scope are members of congressional leadership: Chuck Schumer (Senate Majority Leader) and Hakeem Jeffries (House Minority Leader). It seems like that would help us, but in some ways it doesn't because they need to keep the big picture in mind. For instance, they won't sign Dear Colleague letters because it's not something that they can do as part of leadership, particularly when they're both Democrats and we have a Democratic administration. That can be challenging because you can't fully utilize the power of their leadership roles.
Paula: What new opportunities do you see for advocacy?
Rob: There's a lot of opportunity to grow the Advocacy Committee and to reach members of Congress that we haven't yet met. There are some new members who have just joined Congress.
Paula: I saw that your PurpleStride team, Rob’s Rooters, did an amazing job with fundraising. You raised over $8,000!
Rob: My husband led the charge on fundraising. He did a really great job. I was surprised and touched by the response. Our original goal was $1500 and we thought that was ambitious. We kept increasing our goal. The fact that we ended up with over $8,000 was really amazing.
Paula: It sounds like you have a great support system.
Rob: Our friends, family and colleagues have been really, really supportive.
Paula: As you mentioned, we're always looking for new volunteers. Why should people who have been affected by pancreatic cancer consider becoming PanCAN volunteers?
Rob: It's the best way to make a difference. Things have to change.
I was very fortunate to have been diagnosed early and have surgery. I know from the other areas of advocacy that I work in: you need more survivors. You need more people who can speak up. The only way we're going to change things is to develop more treatment options and better methods of early detection. It's shocking to me, given the work that I do in other areas of cancer, that we have very few treatment options beyond chemotherapy. That's not the case for almost every other part of oncology. I gravitated to advocacy because federal research funding is key to changing that.
I was really struck at PurpleStride when they called the survivors up to the stage. I think there were six of us, which really took even me by surprise. There weren’t more of us out there because we need better detection and treatment. There's just all there is to it.
Paula: Thank you so much for your time. I'm so glad that you're doing well and that we have you on board as a volunteer.
Rob: I feel like I survived this for a reason and I really want to do what I can to make a difference and make things better for those who follow. PanCAN’s a great way for me to do that.
Please feel free to contact Rob Caruano (rcaruano@pancanvolunteer.org) or Paula Mukherjee (pmukherjee@pancan.org) with any questions.
