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In Conversation: Robert Panacci, Affiliate Chair, Phoenix Affiliate
Phoenix Affiliate Chair and survivor Robert Panacci spoke with Community Engagement Senior Specialist Paula Mukherjee about his treatment journey and message of hope to others impacted by pancreatic cancer. This interview has been edited for clarity and length.
Paula: What first brought you to PanCAN?
Rob: I was diagnosed with pancreatic cancer in October 2019. Between the fall of 2019 and the summer of 2020, I went through chemo, radiation and surgery.
There was a period when I would go to Google and try to figure out what was going on, and the information was just horrible. Nothing positive.
During chemo, one of the members of the Mayo Clinic staff came in while I was receiving infusions to see how I was feeling and mentioned PanCAN’s website. I went to the site and one of the first things I did was read stories of hope from survivors.
That fortified my belief that I just had to stick to the plan and hope everything would work out.
Paula: Were you familiar with pancreatic cancer before you were diagnosed?
Rob: I had known someone who was much older who had passed from pancreatic cancer, and I knew that it's one of the deadliest cancers, but I didn't know that much beyond that.
One thing that hits you after the diagnosis is that you've got a limited amount of time now. How do you think about all the things you didn't do, or the things you might have done better? I had to push those questions away and tell myself: it's going to be painful, I’m going to feel nauseous, it's going to be scary, but I’m going to do it and feel it and see what happens from there.
I decided to keep a hopeful mindset and not dig into the type of chemo I was getting and the side effects, aside from what the oncologist said. I would go through it and stick with the plan that my doctor had laid out. That's all I wanted to focus on. It was one of the first times in my life where I truly knew what it meant to be present.
Paula: It sounds like you felt comfortable trusting your treatment team.
Rob: I got diagnosed because I had a pain in my back and went to my family doctor. She ordered an ultrasound. The ultrasound showed the shadow of a mass, so she sent me immediately to an oncologist. We sat down and they laid out a plan of chemo, radiation and then potentially surgery. After all that, they were hoping that they could give me a year to live. That was horrible to hear.
My wife then arranged an appointment with Mayo Clinic, which fortunately is almost across the street from our house. The oncologist had looked at my results and said that my tumor was sitting close to the abdominal aorta and that if we could get it to shrink away from there, I had a good chance of coming through this.
He didn’t say “about a year to live” or two years. He said that I had a shot, and my trust in him clicked in right from that point. I said, “I'm in your hands, let's go.”
The wheels got in motion, and I started going through treatment. I met the surgeon, who made it clear that I had to listen to what the oncologist said, shrink the tumor first, and then surgery. Again, my confidence was there. I trusted in what my doctors were able to do, and we went forward.
Paula: How did the Covid pandemic affect your treatment?
Rob: The pandemic introduced a lot of complications. I was alone in the hospital with the doctors and nurses most of the time. My family members were only allowed to come in one at a time, once a day.
One of the key things that my doctor said at the beginning of my treatment was that we're going to be both very aggressive with the timeline and very aggressive with the chemo. I was worried about stopping my treatment if I got sick.
When Covid ramped up, the other challenge was: would the hospital be able to fit me in? There were so many other people suffering, and the hospital was completely jam-packed with patients. There was always that concern.
It was very difficult and added a whole new level of stress to the situation.
Paula: We talked about your treatment team; what did your personal support system look like?
Rob: It was amazing.
As I mentioned, when I was initially diagnosed, the doctor said that I had a year to live.
I've got four kids. At that time, my son was just starting high school. I had two daughters who were just finishing high school and deciding what they were going to do next. My oldest daughter was in nursing school, set to graduate at the end of 2019.
We gathered everybody at home and broke the news. It was very emotional.
They were just starting the adult part of their lives. I wanted them to focus on school and their jobs. I told them, “Do what you need to do. I'll take care of this and do what I have to do. When we need each other, we’ll always be there for each other.” I’m not sure if it was the right or wrong thing to say; I just had to tell them that.
The kids were great. They took turns spending time at the hospital when they could, so I got a chance to see everybody.
Everyone mobilized. I’m originally from Canada and my parents came down to Phoenix. My dad was going through prostate cancer treatment at the time. When he had to go back for treatment, my mom stayed to help. My wife was working while taking 100% care of the household.
It was incredible to have my family come together. I also had supportive friends and extended family – it was an outpouring of love and support, with everybody wishing me strength and asking if we needed anything.
I didn’t feel alone. The fight was on me, but I didn't feel alone in my corner.
Paula: What made you decide to start volunteering with PanCAN?
Robert: It took a while. After surgery, I was ecstatic because it was successful, and the surgeon was confident that he had gotten everything. My first thought was, “I don't want to identify as a cancer patient anymore.”
I didn't want to know about cancer. I wanted people to start treating me normally, instead of asking if I was okay. Cancer was behind me now. Now I had to build my life back up.
My strength was completely gone. I started working on things around the house, little projects just to get me moving. It was my wife who motivated me to do that because I didn't feel like working out. I wasn't sure what I was going to do in terms of getting back to work.
Every time I got a CT scan, things looked good. My cancer marker numbers were good. The doctor was encouraged by my progress. I was getting my strength back.
Before PanCAN PurpleStride Phoenix 2024, I had received a newsletter that said PurpleStride was coming up and volunteers are needed. It hit me that surviving pancreatic cancer is rare, and I was coming close to the five-year mark. I’ve had family and friends reach ask if I could speak to someone who was recently diagnosed, and most of the people I’ve spoken to didn’t survive. I couldn’t stay quiet anymore.
I decided to volunteer and meet with the PurpleStride team. The event planning process was fun and interesting, and I fundraised a significant sum. The day before the event, we went to set up the site, fold T-shirts, set out swag bags and so on.
I was blown away on event day by the number of people who came out and had been impacted by this terrible disease or were participating to honor those who have passed. I thought, “I’ve got to do more.” I took on the role of Affiliate Chair and I’m trying to get this year's event to be as good as last year's.
I’ve immersed myself in this, and with the increase in the number of cases and the five-year survival rate stagnating at 13%, I made the decision to focus on pancreatic cancer in several ways, with volunteering with PanCAN as the primary way because the organization provides so much awareness and support.
At the same time, I've started working with a venture capital company that focuses specifically on investing in companies that deal with cancer technologies, such as new RNA therapies or intelligent chemo ports. The company reached out to me because they want to focus on pancreatic cancer. It was a perfect fit; I can bring my experience, and maybe we can drive better outcomes in whatever way possible.
Paula: What is your vision for the future of the Phoenix Affiliate?
I have a few key goals. One is increasing PurpleStride sponsorship. We’re the fifth-largest city in the country, so there's huge opportunity here.
Supporting more people; I had a great family and friend unit that was all around me, but there are many people who go through pancreatic cancer who don't have that, or whose families just don't know how to deal with it. Providing that support is huge.
Improving advocacy. One of my goals is making the same leaps and strides in pancreatic cancer that we’ve seen in prostate cancer.
We really want to keep PanCAN messaging going out throughout the year with sponsors, participants, and people who have leaned on PanCAN over the years, so that's the next step after PurpleStride is over. We're making sure the event comes off flawlessly, and at the same time building relationships, and then we must continue to build those relationships throughout the year. PanCAN's got great resources that we'll be leveraging more fiercely between PurpleStride and the end of the year to make sure that we've got year-round engagement.
Paula: Last year you attended your first PurpleStride. Was there a special moment that you’re looking forward to making happen again?
Robert: The camaraderie and fun of last year was great. I saw people coming in smiling, chatting and hugging.
We had a seating area for survivors in front of the stage. When the speaker called the survivors up to the front, it was a sea of white shirts that came together. I get a tingle just thinking about it now.
I want to get to the point where we don't have enough chairs for all the survivors.
Paula: What keeps you busy outside of PanCAN?
Robert: The venture capital fund is taking up a lot of my time now. Last year, I was lucky enough to have my first grandchild. That's been a true joy.
I spend a lot of time with my wife and trying to keep up with the kids; they have crazy schedules. Family and friends, that's where I like to spend my time.
Paula: What message would you like to share with other survivors and people affected by pancreatic cancer?
Robert: Never lose hope. There's always someone in your corner; family, friends and PanCAN.
The doctors are doing the best they can. You're doing the best you can. There are going to be dark days when you're physically and mentally exhausted, but if you can make it to the next day, you stand a chance. Don't lose hope.
That extra day, that extra week, that extra month – they can add a lot to your life. You can see advancements in medicine. You can see your grandchild arrive.
We’re all destined to have the same fate at some point, but in the meantime, while you're here, having hope and focusing on what's good in your life is what will move you forward.
Please feel free to contact Robert Panacci (rpanacci@pancanvolunteer.org) or Paula Mukherjee (pmukherjee@pancan.org) with any questions.
Paula: What first brought you to PanCAN?
Rob: I was diagnosed with pancreatic cancer in October 2019. Between the fall of 2019 and the summer of 2020, I went through chemo, radiation and surgery.
There was a period when I would go to Google and try to figure out what was going on, and the information was just horrible. Nothing positive.
During chemo, one of the members of the Mayo Clinic staff came in while I was receiving infusions to see how I was feeling and mentioned PanCAN’s website. I went to the site and one of the first things I did was read stories of hope from survivors.
That fortified my belief that I just had to stick to the plan and hope everything would work out.
Paula: Were you familiar with pancreatic cancer before you were diagnosed?
Rob: I had known someone who was much older who had passed from pancreatic cancer, and I knew that it's one of the deadliest cancers, but I didn't know that much beyond that.
One thing that hits you after the diagnosis is that you've got a limited amount of time now. How do you think about all the things you didn't do, or the things you might have done better? I had to push those questions away and tell myself: it's going to be painful, I’m going to feel nauseous, it's going to be scary, but I’m going to do it and feel it and see what happens from there.
I decided to keep a hopeful mindset and not dig into the type of chemo I was getting and the side effects, aside from what the oncologist said. I would go through it and stick with the plan that my doctor had laid out. That's all I wanted to focus on. It was one of the first times in my life where I truly knew what it meant to be present.
Paula: It sounds like you felt comfortable trusting your treatment team.
Rob: I got diagnosed because I had a pain in my back and went to my family doctor. She ordered an ultrasound. The ultrasound showed the shadow of a mass, so she sent me immediately to an oncologist. We sat down and they laid out a plan of chemo, radiation and then potentially surgery. After all that, they were hoping that they could give me a year to live. That was horrible to hear.
My wife then arranged an appointment with Mayo Clinic, which fortunately is almost across the street from our house. The oncologist had looked at my results and said that my tumor was sitting close to the abdominal aorta and that if we could get it to shrink away from there, I had a good chance of coming through this.
He didn’t say “about a year to live” or two years. He said that I had a shot, and my trust in him clicked in right from that point. I said, “I'm in your hands, let's go.”
The wheels got in motion, and I started going through treatment. I met the surgeon, who made it clear that I had to listen to what the oncologist said, shrink the tumor first, and then surgery. Again, my confidence was there. I trusted in what my doctors were able to do, and we went forward.
Paula: How did the Covid pandemic affect your treatment?
Rob: The pandemic introduced a lot of complications. I was alone in the hospital with the doctors and nurses most of the time. My family members were only allowed to come in one at a time, once a day.
One of the key things that my doctor said at the beginning of my treatment was that we're going to be both very aggressive with the timeline and very aggressive with the chemo. I was worried about stopping my treatment if I got sick.
When Covid ramped up, the other challenge was: would the hospital be able to fit me in? There were so many other people suffering, and the hospital was completely jam-packed with patients. There was always that concern.
It was very difficult and added a whole new level of stress to the situation.
Paula: We talked about your treatment team; what did your personal support system look like?
Rob: It was amazing.
As I mentioned, when I was initially diagnosed, the doctor said that I had a year to live.
I've got four kids. At that time, my son was just starting high school. I had two daughters who were just finishing high school and deciding what they were going to do next. My oldest daughter was in nursing school, set to graduate at the end of 2019.
We gathered everybody at home and broke the news. It was very emotional.
They were just starting the adult part of their lives. I wanted them to focus on school and their jobs. I told them, “Do what you need to do. I'll take care of this and do what I have to do. When we need each other, we’ll always be there for each other.” I’m not sure if it was the right or wrong thing to say; I just had to tell them that.
The kids were great. They took turns spending time at the hospital when they could, so I got a chance to see everybody.
Everyone mobilized. I’m originally from Canada and my parents came down to Phoenix. My dad was going through prostate cancer treatment at the time. When he had to go back for treatment, my mom stayed to help. My wife was working while taking 100% care of the household.
It was incredible to have my family come together. I also had supportive friends and extended family – it was an outpouring of love and support, with everybody wishing me strength and asking if we needed anything.
I didn’t feel alone. The fight was on me, but I didn't feel alone in my corner.
Paula: What made you decide to start volunteering with PanCAN?
Robert: It took a while. After surgery, I was ecstatic because it was successful, and the surgeon was confident that he had gotten everything. My first thought was, “I don't want to identify as a cancer patient anymore.”
I didn't want to know about cancer. I wanted people to start treating me normally, instead of asking if I was okay. Cancer was behind me now. Now I had to build my life back up.
My strength was completely gone. I started working on things around the house, little projects just to get me moving. It was my wife who motivated me to do that because I didn't feel like working out. I wasn't sure what I was going to do in terms of getting back to work.
Every time I got a CT scan, things looked good. My cancer marker numbers were good. The doctor was encouraged by my progress. I was getting my strength back.
Before PanCAN PurpleStride Phoenix 2024, I had received a newsletter that said PurpleStride was coming up and volunteers are needed. It hit me that surviving pancreatic cancer is rare, and I was coming close to the five-year mark. I’ve had family and friends reach ask if I could speak to someone who was recently diagnosed, and most of the people I’ve spoken to didn’t survive. I couldn’t stay quiet anymore.
I decided to volunteer and meet with the PurpleStride team. The event planning process was fun and interesting, and I fundraised a significant sum. The day before the event, we went to set up the site, fold T-shirts, set out swag bags and so on.
I was blown away on event day by the number of people who came out and had been impacted by this terrible disease or were participating to honor those who have passed. I thought, “I’ve got to do more.” I took on the role of Affiliate Chair and I’m trying to get this year's event to be as good as last year's.
I’ve immersed myself in this, and with the increase in the number of cases and the five-year survival rate stagnating at 13%, I made the decision to focus on pancreatic cancer in several ways, with volunteering with PanCAN as the primary way because the organization provides so much awareness and support.
At the same time, I've started working with a venture capital company that focuses specifically on investing in companies that deal with cancer technologies, such as new RNA therapies or intelligent chemo ports. The company reached out to me because they want to focus on pancreatic cancer. It was a perfect fit; I can bring my experience, and maybe we can drive better outcomes in whatever way possible.
Paula: What is your vision for the future of the Phoenix Affiliate?
I have a few key goals. One is increasing PurpleStride sponsorship. We’re the fifth-largest city in the country, so there's huge opportunity here.
Supporting more people; I had a great family and friend unit that was all around me, but there are many people who go through pancreatic cancer who don't have that, or whose families just don't know how to deal with it. Providing that support is huge.
Improving advocacy. One of my goals is making the same leaps and strides in pancreatic cancer that we’ve seen in prostate cancer.
We really want to keep PanCAN messaging going out throughout the year with sponsors, participants, and people who have leaned on PanCAN over the years, so that's the next step after PurpleStride is over. We're making sure the event comes off flawlessly, and at the same time building relationships, and then we must continue to build those relationships throughout the year. PanCAN's got great resources that we'll be leveraging more fiercely between PurpleStride and the end of the year to make sure that we've got year-round engagement.
Paula: Last year you attended your first PurpleStride. Was there a special moment that you’re looking forward to making happen again?
Robert: The camaraderie and fun of last year was great. I saw people coming in smiling, chatting and hugging.
We had a seating area for survivors in front of the stage. When the speaker called the survivors up to the front, it was a sea of white shirts that came together. I get a tingle just thinking about it now.
I want to get to the point where we don't have enough chairs for all the survivors.
Paula: What keeps you busy outside of PanCAN?
Robert: The venture capital fund is taking up a lot of my time now. Last year, I was lucky enough to have my first grandchild. That's been a true joy.
I spend a lot of time with my wife and trying to keep up with the kids; they have crazy schedules. Family and friends, that's where I like to spend my time.
Paula: What message would you like to share with other survivors and people affected by pancreatic cancer?
Robert: Never lose hope. There's always someone in your corner; family, friends and PanCAN.
The doctors are doing the best they can. You're doing the best you can. There are going to be dark days when you're physically and mentally exhausted, but if you can make it to the next day, you stand a chance. Don't lose hope.
That extra day, that extra week, that extra month – they can add a lot to your life. You can see advancements in medicine. You can see your grandchild arrive.
We’re all destined to have the same fate at some point, but in the meantime, while you're here, having hope and focusing on what's good in your life is what will move you forward.
Please feel free to contact Robert Panacci (rpanacci@pancanvolunteer.org) or Paula Mukherjee (pmukherjee@pancan.org) with any questions.
