DESCRIPTION
Rob Caruano woke up one night with severe pain in his stomach. He wanted to be seen at an urgent care, but due to COVID, the facility couldn’t admit him. When he was seen, he had to insist on an MRI, which resulted in his diagnosis of pancreatic cancer. Between surgery and chemotherapy, he achieved survivorship.
A native of Pennsylvania, Rob Caruano was living and working in New York City in December of 2021 just before Christmas when in the middle of the night he was awakened by an excruciating pain he thought was in his stomach. The next morning, he went to an urgent care, but because of COVID, the healthcare system was overloaded and the urgent care had people on beds in hallways. The staff told him his only option was to go to an emergency room.
Rob went home, got online, and thought he could easily make an appointment with an ER, but they, too, were overwhelmed. It was two days later when Rob got an appointment with a physician. When Rob finally met with the doctor, Rob was told what he had was probably pancreatitis. The doctor asked that Rob get his blood test, which he did that same day. His enzyme levels were five times the normal range, which confirmed he had had a pancreatic attack. Doctors assumed Rob had a gallstone, but suggested he get an ultrasound, just to be safe. Because of COVID and its affect on the health care system, it took him three weeks to ultrasound. When it finally took place, it revealed a small, 0.1cm opening in his duct. The doctor said something wasn’t right because that dialation would not normally exist three weeks after a gallstone was discovered. He said it would have moved by then, which is why he suggested Rob get an MRI. However, when Rob contacted a gastroenterologist to prescribe an MRI, he actually refused to do it. He instead wanted to remove my gall bladder. Rob insisted on an MRI, which the doctor agreed on the condition that the doctor removed Rob’s gall bladder. Rob agreed to have the surgery done.
The MRI was performed, and show Rob had a mass on his pancreas. The doctor called Rob to admit to Rob that was wrong. Rob still had to undergo a biopsy, which made it official that he had pancreatic cancer. By the time he was diagnosed, it was three months after his original symptoms, leaving him concerned the cancer had spread to other parts of his body.
Initially when Rob was diagnosed as metastatic Stage IV, because spots were identified on his liver that doctors thought be cancerous. If those spots were cancerous, then doctors would perform the surgery to remove Rob’s pancreas. Thankfully, the spots were determined to not be cancerous, meaning doctors could remove the pancreas. Rob received more good news when he learned the Whipple procedure used to remove his pancreas would be limited in scope, allowing his stomach and intestines. They ended up removing half of Rob’s pancreas and his spleen.
Next, in order to prevent recurrence, Rob was put on a six-month chemotherapy regimen. He took fulfirinox every other week over the six months. Rob never actually vomited, but he was constantly nauseous. Three-quarters of the way through the six months, he switched to a regimen featuring ativan, which enabled him to finish up the regimen without complications.
COVID made its presence felt at the beginning of Rob Caruano’s journey, and did so again during treatment. While hospitalized, Rob could only have one visitor, which most of the time was his husband, who was also Rob’s primary caregiver.
With the surgery in his past, Rob says his health is very close to the way it was before his diagnosis. He says he has some neuropathy issues, but they do not affect his lifestyle.
Additional Resources:
Support Group;
Pancreatic Cancer Action Network: https://www.pancan.org
TRANSCRIPT
Bruce Morton: A diagnosis of pancreatic cancer is tough enough all by itself. But our guest on this episode faced an additional obstacle, and his journey could have been more difficult, but he averted a potential second additional obstacle. He is Rob Caruano of New York City. This is the Cancer Interviews podcast. I’m your host, Bruce Morton. Now it’s time to hear Rob’s story. So, here he is, and Rob, welcome to Cancer Interviews.
Rob Caruano: Thank you. Great to be here. Thanks for having me.
BM: First things first, Rob. Let’s start out by getting to know you better. If you would, tell us a bit about yourself, where you are from, what you do when you are working, and what you do for fun.
RC: I grew up in Pennsylvania but have been in New York City for more than 20 years. My day job ironically is actually working as a cancer patient advocate for a pharmaceutical company, so I am the company’s representative to all the nonprofit patient advocacy groups and the professional societies in the various areas of cancer. In my case it is mostly melanoma and lung cancer, so I am not working in pancreatic cancer. For fun, to travel and take advantage of all the things New York City has to offer, especially the restaurants.
BM: Rob, for all of us who have survived cancer, there was that juncture when we noticed something about our health was something other normal, and that juncture was the start of a chain of events that led to a diagnosis of cancer. For you, when and how did normal become abnormal?
RC: In December of 2021, just before Christmas, I woke in the middle of the night with a really bad, excruciating pain in what I thought was my stomach. It turned out that it was pancreatitis. I did not know what that was at the time, but that’s what it was. I went to urgent care the next morning. This was right at the height of omicron, the first big omicron variant, where all the health care system was overloaded. I was actually turned away, so my journey was a little unique in that respect.
BM: You’re in pain, you need to be seen, and you can’t be seen. If you would, how difficult that was, how you overcame it and how you were eventually seen.
RC: When I went to the clinic, they met us at the door and told me I couldn’t be seen because they were overwhelmed with COVID. They said there were people in the hallways, there was nothing they could do. They said my only option was to go to an emergency room. In hindsight, I probably should have done that, but at the time I thought I would be turned away there as well, so I went home and immediately got online with one of these healthcare services that have many, many doctors. I thought I would be able to get a quick appointment, but I couldn’t. They were also overwhelmed with COVID. So, the first appointment I could get was two days later. It was with a physician I had never met. I had no idea who it was. I didn’t care. When I finally did meet with that provider, he suggested it was probably pancreatitis. He asked me to get my blood tested, which I did that day. I had no expectation that my enzyme levels would be that high, but it was five times higher than the normal range, so that confirmed that it was a pancreatic attack. They assumed, and this was understandable, that it was a gallstone. The gall bladder throws the gallstone into your pancreas and causes a problem. So, initially I had didn’t have a lot of concern. I thought I had a gallstone. He suggested I get an ultrasound to be safe. Again, because of COVID, it took three weeks just to get the appointment to get an ultrasound. That ultrasound result showed a small, 0.1 centimeter opening in my duct. The doctor said something’s not right because I wouldn’t have the dialation in the pancreatic duct three weeks after a gallstone. He said it would have moved by then. He suggested that I get an MRI. So, when I contacted the gastroenterologist to prescribe an MRI, he actually refused to do it. He instead wanted to have my gall bladder removed. He said it was a simple thing, that it happens all the time. I had to argue with him in order to get the MRI to see what was really going on inside my body. We ultimately made a deal. He said he would prescribe the MRI if I agreed to have my gall bladder removed, and we scheduled the surgery. That’s what we did. We had the MRI. That was the test that showed I had a mass on my pancreas, showing he was wrong. He’s the one who called me to tell me he was wrong. While it wasn’t an official diagnosis at the time, and I still had to have a biopsy, it was pretty clear it was pancreatic cancer. By the time that I was diagnosed, it was three or four months after my original symptoms. Every step in the process was delayed because of COVID, and I was very concerned that it would spread before I could undergo the necessary treatment.
BM: We’re confident you’ll be able to learn some tips and tools to help you through your personal cancer journey, but first we’d like to invite you to please give us a ‘like,’ leave a comment or review below and share this story with your friends. Kindly click on the Subscribe button below and click on the bell icon, so you’ll be notified when we next release a cancer interview. And if you or a loved one are facing a cancer diagnosis, please clock on the link in the Description and Show Notes below to check out our free guide, “The Top Ten Things I Wish I Knew When I First Got Cancer.”
Before we go on with more of your story, Rob, I want to highlight part of it you have already referenced because it’s important that we give it the proper attention. You had to fight to get seen and then fight to get the MRI that ultimately revealed your pancreatic cancer. We already know this is significant, but we want to hear it in your words: How important is patient advocacy?
RC: It’s huge. You have to be your best self-advocate. You have to listen to your body and be insistent. It’s unfortunate that we have to do that, but we do; because if I hadn’t pushed for that MRI, I would have had a gallbladder removed, it would not have solved the problem and by the time we realized what the problem really was, I would not have been operable for my type of cancer. I know some people are not comfortable doing it, and I will be honest. It is not the most comfortable thing for me to, but I just felt that I needed to know what was going on and I think everybody should do the same.
BM: Anytime someone is diagnosed with cancer, it is a horrific day; but each person is different, each diagnosis is different. In your case, how did you handle this awful news?
RC: I was surprised because I had no family history, certainly not of pancreatic cancer, not even of cancer in general. In my family, the big concern is heart disease, and strokes and things like that, so that was always in the back of mind. It was a little different in my case. The only positive of taking so long to get the diagnosis it gave me several months to slowly ease into the idea that I was getting cancer so that by the time I got the actual diagnosis, for me it was almost confirmatory. It was not the shock that a lot of people get when they first heard the news because they got a test result back that they weren’t expecting. I had a long process to finally get to that point, not that it made it any easier. It was still difficult with pancreatic cancer. The assumption was that I was pretty terminal at that point, but it was something in which I had a little bit of time to slowly ease into.
BM: Following diagnosis comes treatment, so describe what treatment consisted of.
RC: Initially, when I was diagnosed, there was concern that I was metastatic Stage IV. It looked like the cancer had spread to my liver. I had spots on my liver. So, there was an enormous amount of back and forth with two major health institutions, actually, and no one could figure out if these spots were cancerous. There was a period of time where it looked like I was not going to be operable because if the cancer had spread to the liver then they won’t operate. Ultimately the institution where I received my care made the decision that they would wheel me in, open me up and while I was on the operating table, manually inspect and see if the spots were cancerous. If they were, they would bring me back out, and the spots weren’t, then the doctors would proceed with the surgery. So, thankfully, the spots were not cancerous, but it was a very stressful time wondering if I would have the surgery or not. I ended up having a procedure called the Whipple procedure. I started out having a Whipple, and they had me on the operating table. Then the surgeon realized the tumor was right on the borderline where you could take the head of the pancreas and do a Whipple procedure, which is standard, or take the other half of the pancreas, basically, which would be its body and the tail. Thankfully, in my case they made the decision to do the latter. So, I didn’t have the full Whipple procedure where they had to touch my stomach or my intestines. Those were preserved. They took the other half of my pancreas, which involved removing the spleen and gall bladder, and most of the pancreas. So, that was the surgical treatment, and then after surgery, I had a very rare treatment of my pancreas. There was no roadmap on how to deal with this. We had a conversation with the provider and made the decision to be extra safe that we would do chemotherapy to do everything to prevent recurrence. I did six months of fulfirinox, which is a drug regimen every other week.
BM: We know chemotherapy isn’t pleasant, so in your case, what was the most difficult part?
RC: I had one thing that was really tough for me, and that was the nausea. I had almost constant for the whole time of the treatment. I never actually vomited. It could have been a lot worse. Some people have major issues with vomiting. I never actually vomited, but always felt like I was going to. I was very, very nauseous. We tried everything, all different combinations of things and tricks and tips and nothing really worked until about three-quarters of the way through the chemotherapy. We had to try one more thing and that was Ativan and that was what did the trick. So, I took that for the last couple months of treatment. Up until then, I just made my way through it, but all things considered, I was very healthy and in really good shape. I was relatively young and could tolerate the regimen relatively well.
BM: Rob, we have already heard about how COVID asserted itself as you were seeking treatment, but what about during treatment and after treatment?
RC: Only to the extent that I was limited in terms of who could visit and support. Because of COVID, only one person could visit at a time, which was tough on my husband because he was my caregiver. He did bring our priest with us because he doesn’t count as a visitor. Other than that, I couldn’t have additional visitors.
BM: We brought up a theme a little bit earlier that we have brought up before, self advocacy, but now we want to shine a light on an issue never previously up in our more than 100 interviews. That issue is Patient Equity. What is it and what does it mean?
RC: Equity in its simplest form is basically ensuring that all people, regardless of race, ethnicity, sexual orientation, all of that, have a fair shot at getting good or the best possible health options. That’s generally what health equity means. In my case, I am part of the LGBT+ community, and that can mean many things. I was fortunate enough to be at an institution that actually did Health Equity quite well and really has a mind toward it. In my case, all the right questions were asked up front. The asked about sexual orientation, they asked about gender identity, asked about my husband. When I was first diagnosed and we didn’t know how long I would live, they asked questions about fertility, preserving fertility, was that a concern or what do we want to do about it. We were middle aged gay men with no children. That easily could have been assumed to not be a topic that has to be brought up, but they did, they did all of the right things. Unfortunately, most institutions don’t do that. I think things are getting better, but I think there is a lot of room for improvement. That’s just my story as a gay man. When you talk about race and ethnicity there are factors that also bring in a host of issues. It’s an unconscious bias when providers are meeting with individuals. People of color are often assumed to be not as adherent to a treatment or have the right insurance to be able to afford treatment, so automatically certain things are not discussed or offered to a patient because of those preconceived notions. So, that’s what equity is really getting at help to address the unconscious bias some health care professionals may have, to educate them about how to work with people of different communities, so that you are not inadvertently shutting doors and closing options for people.
BM: Rob, I am just going to take a semi-educated guess and say that this lack of patient equity if you will, varies from facility to facility and even from health care professional to health care professional. What can be the source of addressing this situation?
RC: Short answer is education and awareness, and it is shocking to me and to many, but in medical school in 2023 and 2024, in our current time, there is basically no training provided to providers or future providers on how to do this right. I think that is a gap in the current education, and there are probably some medical schools that do it better than others, because when they went to medical school this was not a topic, and there is no training; so, the training becomes on-the-job, which an institution will provide if it is a good institution. I really think most providers come from a well-intentioned point of view, but they may do things in a less than ideal way because they may not be aware of the consequences of their actions or inactions in their training and awareness.
BM: This said, if education is needed, who can educate the educators?
RC: The people who are on the other side of the table. I think it is very helpful for providers to hear the patients’ side of the perspective, the patients who have been on the receiving end of some of the bad ways in terms of patient care. While I benefited from an institution through my cancer journey that did it right, earlier in my life, I had many negative experiences with health care providers. They made all sorts of judgments and discriminatory comments in my care. When that happens, you shut down, you close off, you don’t share, you withhold information, that is not the key to good health care. A health care provider needs to have open and honest conversation and it needs to be a two-way conversation so that work together as a team to have the best possible care choices.
BM: Now I want to talk about a positive phase of your cancer journey, past, present and I hope future as well. That is the Pancreatic Cancer Action Network, or, PanCAN. If you would, tell us a bit about it, what it has done for you, what it can do for others.
RC: PanCAN is a great organization. It’s actually one of the first websites I visited, www.pancan.org, first to obtain information. They support research to help find early detection methods and preferential treatment options and things like that; but from a practical point of view, but from a patient point of view they provide patient services and answer questions and help with clinical trial information. They give you the whole soup-to-nuts service that a patient or a caregiver would need. I do some volunteer work for the organization in its New York City affiliate. We work together to contact our congressional delegation to gain funding for pancreatic cancer research. It is a really great group that provides a lot of services.
BM: Now, I want to get back to your journey, Rob, and another question that is positive in nature. At some point, you must have felt like you were making strides toward survivorship. If you would, tell us what that was like and how it felt.
RC: I had mentioned earlier how I didn’t know if I would be eligible for surgery. So, as soon as I was cleared for surgery, knowing I had a tough road ahead of me, that in itself made a huge difference in everything because I felt like I had a chance, I had a chance for hope. When the surgery did happen and I came through that, it was a very difficult initial recovery, that was expected, but pretty much everything after the surgery was very positive. I felt very optimistic about my chances because the tumor had been removed, there was no sign of spread. They biopsied 19 lymph nodes and there was no sign of spread.
BM: Rob, we want to wrap up by asking you this question. If you could quantify your health, pre-diagnosis, as 100 percent, as of today how would you quantify it, and if it is shy of 100 percent, what are you prevented from doing?
RC: I am pretty much back to the way I was before. It took a long time to get here. I had lost a significant amount of weight and all of that, but I am pretty much back to where I was. I have some residual neuropathy issues, but they do not affect my lifestyle. I have no complaints. I am feeling pretty good.
BM: Rob Caruano, we want to thank you for your story, not only where it pertains to your specific cancer journey, but to bring the issue of Patient Equity into the light, so Rob, thanks for being with us on Cancer Interviews.
RC: Thanks for having me. It was great to talk to you.
BM: And we want to say what we always say when we conclude that if you or a loved one are on a cancer journey, you are not alone. There are people like Rob, organizations like PanCAN, at www.pancan.org that can ease your cancer journey. So, until next time, we’ll see you on down the road.
Additional Resources:
Support Group:
Pancreatic Cancer Action Network: www.pancan.org
SHOW NOTES
TITLE: Rob Capuano, Pancreatic Cancer Survivor – New York, New York, USA
Rob Capuano woke up one night with a severe pain in his stomach. He wanted to be seen at an urgent care, but due to COVID, the facility couldn’t admit him. When he was seen, he had to insist on an MRI, which resulted in his diagnosis of pancreatic cancer. Between surgery and chemotherapy, Rob achieved survivorship. He is also thankful that the hospital where he was treated was sensitive to issues tied to his being a married gay man, because, says Rob, not all health care facilities have staffers with those sensitivities. Rob says his health is very close to its pre-diagnosis level and works as an advocate for cancer patients.
Additional Resources:
Pancreatic Cancer Action Network: www.pancan.org
Time Stamps:
01:57 Rob woke up with severe pain in his stomach.
02:47 Because of COVID, despite his pain, he could not be immediately seen by a doctor.
03:45 Tests revealed he had a pancreatic attack.
04:55 His gastroenterologist refused to do an MRI, claiming Rob only needed to have his gallbladder removed.
05:20 Eventually able to get an MRI, it revealed Rob had pancreatic cancer.
07:01 Rob talks about the importance of self advocacy.
09:00 Doctors had to decide if they could operate on Rob.
10:15 Treatment began with a Whipple procedure.
11:47 Describes the toughest part of chemotherapy.
14:19 Addresses the thorny subject of Patient Equity.
21:58 Rob recalls when his treatment took a turn for the better.
23:15 Describes his health as of today.
KEYWORDS (tags):
cancer
whipple procedure
pancreatic cancer
bruce morton
folfirinox
cancer interviews
chemotherapy
rob caruano
patient equity
jim foster
pancreatitis
atavan
Comentarios