Patient Perspective: Head and Neck Cancers

September 30, 2019

Information

Patient Perspective: Head and Neck Cancers with guest Mr. Brescia

September 29, 2019

Yale Cancer Center

visit: http://www.yalecancercenter.org

email: canceranswers@yale.edu

call: 203-785-4095

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To CiteDCA Citation Guide

00:00Support for Yale Cancer Answers comes from AstraZeneca, proud partner in personalized medicine, developing tailored treatments for cancer patients. Learn more at astrazeneca-us.com.
00:11Welcome to Yale Cancer Answers with doctors Anees Chagpar and Steven Gore. Yale Cancer Answers features the latest information on cancer care by welcoming oncologists and specialists who are on the forefront of the battle to fight cancer. This week, it is a patient perspective on head and neck cancers with Richard Brescia in a conversation with Dr. Chagpar, Professor of Surgery at Yale School of Medicine.
00:37<vChagpar>Mr. Brescia, maybe we start things at the beginning. Tell me more about your whole cancer journey and how that started.
00:47<vBrescia>Oh! You want to start at the beginning.
00:52<vChagpar> Yeah, I always like the beginning that starts once upon a time.
00:59<vBrescia>Well I had a dental appointment and my dentist, doing what dentists do and inspecting in the mouth, did not like the way my tongue was moving back and forth. And she enquired as to whether or not I had a stroke. I said no, and she said I think you have and I want you to go to the emergency room right away. I said, well I am not going to do that, I am going to drive home and she said, I am going to call the emergency room for you and have them pick you up at your house and she was good to her word. I told her I would go, that I wanted to drive home first. So, I drove home and the EMS people came and picked me up and took me up to Norwalk Hospital where I went in and underwent several tests to find out about this stroke and what the impact was on the brain. The tests kept coming back no stroke, and at one point, my cardiologist who was on tour that day at the hospital, saw me and said what are you doing here and I told him. And he went on and came back about 10 minutes later. He said I just checked all your pictures, you have not had a stroke. I said okay, that's good. And then, someone else came back and said, it looks like you are all fit, you haven't had a stroke, but they wanted me to take a barium swallow test. And then another test came back, not the barium swallow but another came back and said no stroke, and it was about that time, because I had been having problems swallowing and coughing, that it occurred to me that if it was not a stroke, this may be a tumor. So, in the back of my mind, I had not settled on that. And then, two of the physicians came in, I guess supporting each other because it is never good news to pass along to a patient that indeed I did have a very large tumor at the base of the tongue, and I said okay, what do we do now? And they suggested making contact with a couple of the hospitals, whoever I wanted to make contact with for treatment, a diagnosis, complete diagnosis and treatment. I had experience at Yale back in the year 2000 where I had open heart surgery successfully, I am here, and with a wonderful doctor. And so, I had an affinity for Yale and we made a phone call to set up an appointment with them. The dentist had a relationship with a major surgeon at Sloan Kettering and she called him and asked him to see me. And because they had worked together over the years for many times, he invited me and like 2 days later, there was about a 2-year wait to get into to see this guy, and we went to Sloan Kettering first and he confirmed what was diagnosed and he said you have a tumor that is inoperable but treatable. He said, at your age, you would not withstand the kind of operation that had to be done, but it can be treated. And we told him, we are also going to talk to the professor at Yale and he encouraged us to do that. He knew some of the folks here, he had worked with them. And we came and met the people here at Yale, including Barbara Burtness who was the lead oncologist on my case and many others, and we decided we would go to Yale because of the comfort zone there and also because it was hell of a lot easier to get to New Haven from Norwalk than it was to get to downtown Manhattan; having commuted into New York for 40 years, I am very familiar with that trek. So, once we decided on where we wanted to go, that is how we wound up here at Yale.
06:05<vChagpar>And so, were the recommendations and diagnosis essentially the same between the 2 centers or did you get a slightly different view of things at Memorial Sloan Kettering and at Yale? I ask this because a lot of people wonder about getting second opinions.
06:23<vBrescia>I was very much into getting second opinions and they confirmed each other.
06:29<vChagpar>Which is always reassuring.
06:30<vBrescia>Yes. It was to me, yes.
06:33<vChagpar>And so, you saw the team both at Memorial and at Yale, and you had all of these tests done at Norwalk including the barium swallow that was one of the initial tests that had found this mass.
06:47<vBrescia>That's right.
06:47<vChagpar> How did they know that it was cancer?
06:50<vBrescia>They assumed it might be. It was Dr. Shaw at Sloan Kettering that announced it. It was in all likelihood a cancerous tumor. And it was a very large tumor.
07:08<vChagpar>And so, did they do a biopsy to essentially diagnose it definitively?
07:14<vBrescia>No, the diagnosis was done here at Yale. When I made the decision to come in, they then laid out what the procedure would be and the first thing was a procedure to check and make sure that this was what they thought it was. And what kind of a cancer it was.
07:33<vChagpar>Tell us more about that experience. What was that like? I can imagine that it is never incredibly pleasant, were you awake, were you asleep, did it hurt, did it not hurt, was it a major surgery or minor procedure?
07:46<vBrescia>Well, my guess is, that it was a minor one, but I did have a major reaction to it, I can say that much. Dr. Yarbrough handled that here, and he had to go in and take tissue out and as they explained it to me, the exact kind of cancer it was, so they would know the kind of treatment to proceed, and obviously I was out when the procedure took place, but when I came to and was in the recovery, I had the shakes and I did not know what was going on. I was just coming out of it. But that was the only distressing part of it, again I was anesthetized so I did not participate in the feeling aspects of it.
08:50<vChagpar>And then, when they came back, I would assume, a few days later and told you that this was cancer and the type of cancer, you were already mentally prepared for that, is that right?
09:02<vBrescia>I was prepared for it before the doctors in Norwalk Hospital told me. I just assumed that is what it was and in the back of my mind, I had to have the discussion which said, okay what do we do next; I wanted to be proactive. I was not going to sit back and wait for a miracle to happen, and so I wanted to find out the best way to go, which is why we went to Sloan and why came here.
09:30<vChagpar>And when they finally did the biopsy and got the results, what did they tell you about the type of cancer you had and what your options were in terms of management?
09:43<vBrescia>I can't recall what the terminology was, but they basically said the procedure was going to be a combination of chemo and radiation. It would last for several weeks and will see if we can diminish or eliminate that tumor and that would be the plan. At that point, I guess the key person I spent time with was Dr. Burtness. And she would explain to me what was going on and she was the one that brought up the issue of while I was undergoing this treatment, would I consider being part of a trial that was going on, and when she brought that up, my first reaction was, is that going to help me, and she said, I cannot tell you if this is going to help you because we just don't know, this is part of a research project, and so something you have to decide on, you do not have to do it, but if you want to do it, we think it would be helpful. And in my mind, if I was going to go through the treatment anyway and there was some ancillary benefit for others, doctors and researchers who are dealing with this issue of cancer, then there was a benefit of what I was going to be going through. I knew it was not going to be a walk in the park, and so, I said yeah, I will be part of the trial.
11:30<vChagpar>Clinical trials are often something that is scary for patients and not all clinical trials will benefit people, although most people will benefit because we are always comparing standard of care to what we think might be better. Did you know which group you were going to be in or how exactly the trial was set up?
11:53<vBrescia>It really did not make any difference to me. I knew I was going to be part of it, that was all. And like you, I figured that in the long run, this might be a benefit to me, but it certainly was going to be a benefit to people like you and other people who are trying to find a cure to cancer.
12:21<vChagpar>Absolutely. And so, being part of that trial, once you had decided that you were going to do this, wasn't that scary?
12:29<vBrescia>No.
12:29<vChagpar>And how was the treatment? A lot of people, even the word chemo just brings up terrifying images of I am going to be bald, I am going to be sick, I am going to be bedridden, how was that experience for you?
12:44<vBrescia>Well, the chemo was once a week as you know, and the radiation was 5 days a week and that went on for I guess it was 8 weeks or something like that. The radiation made more of an impact on me, I believe than the chemo, although I did have a reaction to the chemo and breakdown of my skin and things like that, but the radiation really knocked me for a loop, particularly towards the end and there were a few days at the end of the 8-week period where I had to be in a wheelchair to get from the car and into Yale.
13:40<vChagpar>Oh my goodness! We are going to take a short break for a medical minute, but we are going to pick up the story right after this.
13:45Medical Minute Support for Yale Cancer Answers comes from AstraZeneca, committed to researching innovative treatments to address unmet needs in head and neck cancer. Learn more at astrazeneca-us.com.
13:58This is a medical minute about survivorship. Completing treatment for cancer is a very exciting milestone, but cancer and its treatment can be a life-changing experience. For cancer survivors, the return to normal activities and relationships can be difficult and some survivors face long-term side effects resulting from their treatment, including heart problems, osteoporosis, fertility issues and an increased risk of second cancers. Resources are available to help keep cancer survivors well and focused on healthy living. More information is available at YaleCancerCenter.org. You are listening to Connecticut Public Radio.
14:41<vChagpar>Welcome back to Yale Cancer Answers. This is Dr. Anees Chagpar, and I am joined tonight by my guest Richard Brescia. We are talking about his journey with cancer. And right before the break, he was telling us about how a dentist of all things in the world had noticed that his tongue was moving in an awkward way, and thought initially that this was a stroke, but lo and behold, it turned out to be a large tumor at the base of his tongue. He sought a couple of opinions at Memorial Sloan Kettering and here at Yale and decided to pursue therapy here with a clinical trial looking at chemotherapy and radiation therapy for his cancer. Now, Mr. Brescia, right before the break, you were starting to tell us a little bit about some of the side effects. A lot of people would not expect to land in a wheelchair. Tell us a bit more about what exactly happened and how you were kind of thrown for a loop as you say.
15:35<vBrescia>Well, there was a tremendous amount of fatigue that set in towards the end as the radiation was accumulating and I am sure in combination with the chemo, and so with the fatigue, I had difficulty moving around and so for maybe 3 or 4 days, for a period of time, I had to get in a wheelchair to be brought in for the radiation treatment.
16:09<vChagpar>And was that something that you had expected or was that something that you were completely unprepared for?
16:17<vBrescia>I cannot say I was unprepared for it, because I knew this was going to be difficult. I had friends go through a similar thing in the past. I was never that close to them when they were experiencing what I was experiencing, so I was not surprised that there was an impact. I was a little disappointed, but you know, I figured this is part of the drill, the cancer was not going to be an easy tumor to remove and so I said, just press ahead and get through with it.
17:01<vChagpar>And did you have the opportunity while you were going through this, some people will be part of support groups and so on where they will have other patients who might be sharing some of their experiences to kind of prepare them a little bit. Did you have that opportunity or avail yourself of that or do you think that would have been helpful?
17:19<vBrescia>I think it was available, but it was something that I did not avail myself of. I had tremendous support from my family. My wife was particularly important and then my 3 kids and their spouses and even some of their kids were very supportive and they would travel from Washington or Boston to visit with me and to see how I was doing, and then the rest of the extended family, nephews and nieces and they all gathered around me to see how I was doing. I think that was from a psychological point of view important to me to know that there was that much support going on.
18:17<vChagpar> Talk a little bit more about that. Because I think from the standpoint of people who are trying to support people with cancer, sometimes it is difficult to know what exactly should we say, what exactly should we do. What advice do you have for people in that regard?
18:34<vBrescia>Somebody asked me about whether or not we were offered transportation from our home in Norwalk to come to New Haven, and I said no, and they thought I needed it, and I said no I didn't need it. I shared that with my wife and my kids I was not driving. We could sit in the back seat on the way to the hospital, we could go over questions we have in our mind and you have in yours to make sure that when we are talking whether it is Dr. Burtness or Dr. Yarbrough or Dr. Hussain, whoever we are talking with that we get the right questions out and we get the answers. And that made a lot of sense to me after the fact of course, and indeed we did do that, Pattie, my wife was with me all the time and she had a list of questions. She wanted to make sure that she got the answers for that would complement my own questions that I had.
20:03<vChagpar>We often find that it is very helpful to bring somebody along to the appointment because some of the information you might not hear, they pick up on and vice versa. Did you find that to be the case?
20:20<vBrescia>You are absolutely 100% right. After we would do a review of what went on that day, and they would say, well what about this and I would say, what do you mean? My wife would say, well, we had a lot of conversation about this and that and it was something I just did not register. And so, that was very important and someone was always with me. I could not agree with you more. You should always have at least one member of the family or someone who you trust to be with you so that you can share afterwards.
20:55<vChagpar>And often times patients bring a notebook which is really helpful.
21:00<vBrescia>And despite the fact that I think my attitude was good, there was still the tension of knowing you are fighting cancer. And so, you are not always as focused as you normally would be.
21:20<vChagpar>Talk more about that. How you dealt with some of those fears. I mean, it seems to me that you were very proactive right from the get-go, you knew, or suspected, that this was cancer even before it was diagnosed and were very methodical about seeking treatment, but that lingering fear, how did you psychologically deal with that? What advice might you give to other patients who might be struggling with the same thing?
21:48<vBrescia>Well, it is hard to put yourself in someone else's shoes, but in my case, I knew that I had to be a part of the solution and had been that way through my career. And so, I had to be very proactive in it. I had to do what I could do and understand the progress that was being made and understand the challenges that I still had to meet. It was part of the process, I did not fear the fact that it was cancer and it could be fatal and I decided to fight it and be part of the team with the doctors here at Yale.
22:39<vChagpar>And I imagine that, as you said, a vital part of that team is your family. Talk about the burdens that placed on them, especially as you were fatigued, ended up in a wheelchair. I am thinking about people who may be in similar situations who might have to deal with issues at work, issues at home, and it is just a compounding thing on top of an already scary diagnosis.
23:09<vBrescia>In my perspective, from my personal point of view, there was another issue at play here and that was can I help teach my family and my friends who were being supportive of me of how to go through something like this. Can I be a good example, and I am not looking for sainthood here, but that was in my mind, that how I handle this thing can be helpful to them and dealing with problems that they may have in the future. So, that was an important ingredient for me.
23:54<vChagpar> That certainly may have helped you in terms of facing that fear, having that resilience and the tenacity and the idea of using what is a teachable moment, to set an example for your family. So, you went through chemotherapy and radiation for 8 weeks and at the end of that, they must have done scans and so on. Tell us about that and the anxiety that may have provoked and what the findings were.
24:24<vBrescia>I certainly was anxious to find out what happened and Dr. Burtness was happy to share with me right off the bat that the tumor had been diminished to the point where we thought it was almost all gone and Dr. Yarbrough went down there and took a peak and said yeah we think we got the whole tumor.
24:48<vChagpar>> And so, ultimately did you have surgery to remove it once it had shrunk or was it so small that you did not need to do that?
24:55<vBrescia>I think it was so small we did not have to do anything. So, there was no surgery needed. And we thought that the cancer was under arrest. Several months later, a couple of lymph nodes popped up again and they were down in the chest area and so Dr. Burtness said I had 2 options at that point, one of them was to do an intense 5-day radiation or to go through the same 8 weeks I did before, and I shared with Dr. Hussain here, and I said we will go for the 5 days and try to get that over with, I did not want to give up another summer with the family. And so, we did that and then that seemed to work pretty well and then Dr. Burtness recommended that I go on Keytruda treatment, which I am on right now, but all of that seems to have worked on the ancillary tumors that had come up in the lymph nodes. So, they seemed to be under arrest or diminished dramatically. So, hopefully that continues.
26:16<vChagpar>You know, the transition between acute treatment, getting radiation 5 days a week and chemotherapy every week to okay, looks like this is good you are on maintenance now is sometimes a little scary for patients because it is like, what do you mean, I was always under constant surveillance. Tell us about that transition to this survivorship period for you.
26:45<vBrescia>It is every 3 weeks, I have an infusion of the Keytruda and we will be doing another PET scan in about a month I think, no less than that, just to see where we are and at that point, I will rely on my friend, Barbara Burtness, to tell me what the next step is. But I am treating it the way I treated the initial treatment and that is this is working to try to prolong my life and my quality of life. And so, I have to keep with it.
27:30<vChagpar>And so, with the Keytruda that you are now and you are getting these infusions every 3 weeks as kind of a maintenance, have the doctors given you an idea of how long that will continue?
27:43<vBrescia>I will find out in about 3 weeks I think, yeah.
27:46<vChagpar>>When they look at the scans?
27:48<vBrescia>Yeah.
27:48<vChagpar>And so, right now, you have not been having any side effects from that. You have been merrily running around?
27:54<vBrescia>No, I have had side effects. One of the side effects from Keytruda is fatigue. And it is almost like clock work, about 2 days after each infusion, I am without any energy at all. I am really depleted. And that lasts about a day and then I gradually come back. But, I had been warned that was one of the issues that I have to deal with.
28:30<vChagpar>Talk a little bit about how you maintain some semblance of a normal life while you are going through this in terms of eating right and exercising and making sure that you have a positive outlook in life. Because a lot of people when they go through cancer, those are kinds of things that they want to know, am I ever going to be "normal" and how am I going to readjust to this new normal that I am after cancer.
29:00<vBrescia>I have stayed very active. I am active with the family, I am active with the city that we are part of. I am part of the administration in the city's government and so I stay busy there.
29:15Richard Brescia is a cancer survivor. If you have questions, the address is canceranswers@yale.edu and past editions of the program are available in audio and written form at YaleCancerCenter.org. We hope you will join us next week to learn more about the fight against cancer here on Connecticut Public Radio.