Welcome to Yale Cancer Center Answers with Dr. Francine Foss and Dr. Lynn Wilson. Dr. Foss is a Professor of Medical Oncology and Dermatology, specializing in the treatment of lymphomas. Dr. Wilson is a Professor of Therapeutic Radiology and an expert in the use of radiation to treat lung cancers and cutaneous lymphomas. If you would like to join the conversation, you can contact the doctors directly. The address is email@example.com and the phone number is 1-888-234-4YCC. This week, guest host Peter Lamothe speaks with cancer survivor Mark Peel and his wife Sharon. Here is Peter.
Lamothe Let’s begin by learning a little bit about yourselves outside of the cancer diagnosis and experience, Sharon, I will start with you, are you from Connecticut?
Sharon I was born and raised in Waterbury, Connecticut, married Mark and we traveled to three or four different states to follow his career. I have been in education for 30 years, I have taught and I have been an administrator. We ended up overseas for three years, which was wonderful and a great experience for us. When we came back, we settled in Hamden, Connecticut, and I decided I did not want the responsibility of teaching anymore, so I went into real estate. Now I work 24/7 Central Connecticut for a family-owned real estate company and love it.
Lamothe That is terrific, and you Mark?
Mark I am a New Haven boy, born and bred, and after college I married Sharon right when we both graduated from college and then, as she has indicated, we lived in a couple different states. I have actually had two careers, one was as an educational administrator at the University level, and after completing that after roughly 23 or so years, I went into business and I have been doing that for roughly the past 20 plus years. Right now, I am semi-retired, and I am a management consultant for a bunch of small companies.
Lamothe Great, well again it is wonderful to have you both with us. Mark, you were saying earlier that you have had two experiences with cancer now in a relatively short period of time, can you take us back to 2006 and bring us up to 2011?
Mark In the spring of 2006, out of a relatively normal routine annual physical, my primary care physician determined that that my PSA had spiked, and she referred me to another physician, a urologist here in New Haven, and I was tested at that hospital, and subsequently, I had a biopsy and the biopsy confirmed that 6/12 core samples that they took were diseased and that kind of set into motion the whole process. Sharon and I pursued research on the disease, and researched all other treatments. We consulted a number of different physicians, radiologists, urologists, and surgeons and eventually got to the point where I decided a second opinion would be helpful and that is what brought me to Dr. John Colberg at Yale-New Haven, and I spent some time with him in a couple of meetings, we did another round of testing and so forth, and he put on the table all the options that I had available to me.
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Lamothe Sharon, how did you feel while this was happening? You had to make a decision with your husband about the course of treatment that he would take.
Sharon Well, I went along with him to all the appointments and all the consultations just figuring that two sets of ears are better than one and I took notes on everything because we found so many times that we would get back home and go, ‘what did he say, what did this doctor say and that doctor?’ So we had pretty copious notes about what we went through. We met a couple of surgeons, a radiologist or two, and there were definitely different personalities involved. Dr. Colberg was by far the most empathetic, sympathetic and kind doctor in this whole series that we have met. Mark and I are pretty close, we were able to talk about everything, we were table to do research together and discuss all the options. At one point, we did go away for a week just to get away from everybody and everything, and we actually looked into cryosurgery. There was a doctor in Florida that was doing that and we decided against it, it seemed a little out there for our purposes, so then we came back and Mark made a decision that he was going to go with Dr. Colberg and I fully supported him and I was there through the whole thing with him.
Lamothe That is great. Mark, tell us about that experience if you will, what Dr. Colberg did for you and the outcome.
Mark Even in our first meeting he seemed to be very inquisitive about my own feelings and approach to having the disease. At that point, it was confirmed that I had the prostate cancer. He definitely did not rush me into a judgment. He is a classically trained surgeon and that has been his specialty for a number of years, even prior to coming to Yale, and yet I never got the sense that he was trying to sell me on the surgical solution, on the surgical treatment. Some of the previous physicians I had consulted with seemed to be expressing their own medical bias and gently coaxing me towards that bias as the treatment of choice. I was not terribly convinced of that. As Sharon indicated, we did a lot of research on the internet and it was funny, we went away for a week to just chew this thing up and went over all the options and so forth and came back from that. Dr. Colbeg was in surgery when I called and that was on a Friday, and on Saturday at 8 o'clock in the morning I had a mysterious call on my cell. I had no idea who was calling me at 8 o'clock, Saturday morning, and it was Dr. Colberg and that was perhaps the ultimate convincing moment for me at that time.
Lamothe And he told you type of attention and care you were going to receive?
Mark Yeah, very much he answered a few questions for me at that time and I spontaneously said ‘would you do my surgery?’ and he said, of course.
Lamothe That is terrific, thank you for sharing that with us. Sharon, from your perspective, you are participating in this with your husband and you are taking a very methodical approach together, but surely there were concerns and questions in your mind perhaps that you may have been
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keeping to yourself, did you get support or validation from anyone that you knew who had had a similar experience who is knowledgeable in this area that could put your mind at ease?
Sharon Unfortunately, there were not too many people that I knew that had gone through this, wives or girlfriends or moms, I did find one colleague whose husband had recently gone through it in a little bit of different situation because he was a bit older, but she was wonderful in answering any of my questions and she was there for me if I needed her. Other people that I talked to were surprised that Mark had this because he seemed so much younger than people that normally get prostate cancer, but we are a strong family and do not have any trouble reaching out to people if we need to, so I certainly had friends that were there for me with a shoulder to cry on or a pat on the back if I needed it, but basically we were pretty strong with ourselves.
Lamothe I think it is good that you were in the right frame of mind at this particular time because there were three other people you had to tell about Mark’s cancer diagnosis, we should say ‘your’ cancer diagnosis because really you go through this together, and that was your three daughters. Sharon, would you like to comment on that? Because Mark told me earlier that it was difficult for him to have that conversation with them?
Sharon It was, but we tried to raise our three daughters to be very strong and independent individuals and to be able to land on their own two feet no matter what the situation, so I did not worry about telling them, that was not a problem, it was more what their reaction would be. Our youngest was overseas and I knew she would worry because she could not see Mark, so he had to be sure that she knew that he was going to be alright. My older and middle daughter, the older is very independent, the middle daughter is probably the most emotional of the three, probably the closest to me in that I talk to her three to four times a day, every day. So, we did tell them all, and once I told them, Mark and I were on the phone to reassure them that he was indeed okay, they could come home, we did not need them there to do anything for us. Although my youngest one did come back and came to the hospital the day that Mark had surgery, spent the day in the room with me waiting for him, but they were all fine, and once I talked to Mark and realized he was going to be okay and it was not, basically, a life changing illness, he was still going to go to work, he was still going to be a dad, he was still going to function as he always did, they were all okay with it.
Lamothe It sounds like you had a strong support group of friends and family and neighbors going into this. Mark, as you went through both of these what was the effect of the treatment on you physically, emotionally, that you could share with us?
Mark I think you are making reference to the recurrence as well?
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Mark About four years after my surgery, I received a PSA result that indicated that I had some recurrence, it was not a definitive indication, but my understanding is that in the absence of my prostate, a PSA of anything of note, would indicate the presence of some disease. At that point, Smilow Cancer Hospital had just opened up and Dr. Colberg is part of the team with Dr. Peschel who is a radiologist and they both saw me and came up with the treatment plan that included hormone therapy and radiation, which is Dr. Peschel’s specialty. So, I’ve had the Da Vinci robotic surgery, and then four years later, I went through a series of 39 radiation treatment along with the hormone therapy. The robotic surgery was one of the truly miraculous experiences in my medical life. I have been fairly strong and healthy all my life with the exception of an episode with some kidney stones a bunch of years ago. So, I think at 60 years of age when I came down with the disease I was in fairly good shape for the surgery. The robotic surgery was almost a non-event if I can say that. I was back to work in three days. It was a wonderful experience, but under the circumstances I expected a lot worse and it was not.
Lamothe What were you thinking the second time you were diagnosed?
Mark That was a great disappointment because what we had bought into the robotic surgery as the gold standard that that would take care of it once and for all, and because some of tests that I had taken indicated that my disease was encapsulated, it had not gone beyond the prostate itself, so the recurrence was a good bit of a let down, but at the same time, Dr. Colberg and Dr. Peschel reassured us that the next level of treatment, the hormone therapy and the radiation, were suitable and very effective treatments for this disease. I appeared to be in a 10% category where similar situations with other people giving up their prostate through surgery, there is a recurrence in some 10% of the cases, and I just happened to fall in that category. So, we became very positive very quickly to use the therapies that would be recommended to get underway with that.
Lamothe Positivity is a great note to end the first half of our conversation on. We are going to take a short break now for a medical minute. Please stay tuned to hear more about Mark and Sharon’s experience with cancer.
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by the Yale Cancer Center. More information is available at yalecancercenter.org. You are listening to the WNPR Health Forum on the Connecticut Public Broadcasting Network.
Lamothe Welcome back to Yale Cancer Center Answers, this is Peter Lamothe and I am joined today by my guests Mark and Sharon who are sharing their story of survivorship with us. Mark and Sharon, we all know that whether it is a celebrity survivor of cancer or your average person who has survived this disease, they have their tales about the impact on their life that this experience has had. It often comes after some hindsight. Could you tell us a little bit about how this effected your lives over the course of those 4 to 5 years but also as you start to look forward?
Mark I think the recurrence of the disease had a very-very significant effect on how Sharon and I rebalanced, that is the keyword there I think, our commitment of time and our priorities. The need to be faced with the challenge of having to deal with the cancer is somewhat daunting and we took a very aggressive philosophical approach to this that not only included dealing with the treatment, the most ambitious treatment, the surgery, but also looking at how we have been spending our time. I have a type A personality and work was a major part of my daily routine, probably to an excess and at 60 years of age when I got the diagnosis, it set us back in the sense that we needed to step back from decades of our routine, and we did that, we got out of town, we started to talk about things that we had not talked about in a long time and so we needed to involve more of our personal lives, our friends, our family, spending more time with the family and we made a slow adjustment and made a commitment to do so.
Lamothe Sharon, what is your perspective on that?
Sharon All of the above, and one of the things that we did try do more, which we always wanted to do, was travel. Rather than talk about it and say in five years we will go to Italy, or in two years we will go here or there, we bought a timeshare at Cape Cod so that we have a place to get away at least one week out of the year, and any of our friends and family can come with us. So, we have done that since 2006 and we have tried to take at least one major trip. This past year we went to Israel, my daughter got married there, so we went over for the wedding. Before that when my youngest was in the UAE, she was living in Abu Dhabi, we have never been there, so we went to see her there. We visited friends on the West Coast that we had not seen in a while. We just tried to make more plans to see more people that were close to us and spent more time with friends and family that were important to us.
Lamothe I think everyone’s experience with cancer is different. Some people take your rebalancing approach. Some take this approach that they have to hurry up and get as much done as they can because they do not know what the future will be, the future does not seem as certain as it used to
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and I think those are all good and it is all dependent upon the individual. In terms of couples or spouses that you both chose the same way to respond is good because that is not always the case and it can be very problematic in relationships, but it does not seem like that was the case with you all. So besides travelling and the timeshare, what about the day-to-day? Do you have any new routines? Do you have new traditions that you are starting? Do you have grandchildren? What is occupying your time that is bringing a smile to your face every day besides each other?
Sharon Funny you should ask about grandchildren, we just had our first seven weeks ago and she lives in New Jersey, so that has been a major part of our life just in the past few months, but, for Mark, he is working, going into the office half days rather than full days now. So, we always have afternoons. My real estate has slowed down a little bit, I am not working full days anymore, I will if have to, but usually we are both home in the afternoon and whether it is to watch a program together, or read a book, or just relax at home, cook a meal, and spend time together, we have that now that we did not before.
Lamothe Great, and it sounds like you are not sweating the small stuff anymore.
Mark Good point.
Mark The small stuff just does not count for much.
Lamothe I think it would be good to hear from you Mark, as the patient, what advice you would have for a man like yourself, or men in general, who are facing a prostate cancer diagnosis or any cancer diagnosis?
Mark As I said previously, I think doing the research is not just something that I found necessary, I think everybody facing this needs to do that because there is no one perfect solution to this disease and there are several valid proven treatments involving radiation as opposed to surgery and so far it is generally a very slow moving disease, so you do not have to make a lot of decisions quickly. In our case, we decided very early on to be very aggressive about dealing with the treatments and we chose the surgical option primarily because of my age, I was 60 years old and in good shape to tolerate surgery, which I found was hardly surgery at all, given the da Vinci robot treatment, but I would strongly encourage second opinions. I am just a believer of that in general, but in my case it meant everything, it meant that I didn’t have to settle for the first round of medical opinions I received and not all of the consultation we had were that comforting, they tended to paint probably the darker side of this disease, involving impotence, and involving incontinence, those being the major negative outcomes of the disease, dealing with the disease and the treatments for the disease.
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So second opinions, I would strongly recommend in every case. Being positive is part of, and I think the best way to approach this type of disease, perhaps all diseases, but a good frame of mind about the options, about the outcomes, and about just dealing with the challenge, the medical challenge that you are facing, you just have to move on, you have to identify it, see it for what it is, and that is so powerful in terms of how other people will relate to you.
Lamothe Did you take any inspiration from other survivors’, people in your life or stories that you are aware of?
Mark This is going to sound a little odd, but about 40 years ago, I read a book by Norman Cousins and it was titled Anatomy of an Illness and he had been facing a fatal illness at the time. He was an author and not a medical person and he determined that after all of the tests and all of the treatments and so forth that he had undergone with the best of medical science at the time dealing with the situation, that humor was perhaps one of the best, most positive things that he could immerse himself in, in order to get better and I remember this book and it was a powerful determinant of how I approached it.
Lamothe Did you pick it up a second time?
Mark No, I did not. Instead I started a diary.
Lamothe Tell us about that?
Mark Well, I started logging all of our meetings, all of our consultations, some points of research and so forth and doing it in a humorous way, and I would make humorous comments.
Lamothe Share one with us?
Mark Well, if you go to enough physicians’ offices for your consultation, you start to get hooked on the reading material and I would look forward to somebody’s consultation because it was the only way I could keep up with Britney Spears and Lindsay Lohan, and what was going on in their lives, not that it was terribly important to me, but I like the New Yorker and I do not have a subscription to the New Yorker and things like I just, I got involved in catching up with my physician’s office reading, so that is just one outcome of the thing.
Lamothe Sharon, I would like to ask you the next question, which is after a cancer diagnosis everyone is focussed on the patient, and personally, I think not enough focus is given to the spouse or the primary caregiver because they are thrust into a position for which they have little training other than the relationship that they have with the individual and they can often feel overwhelmed by all that they have to do, doctor visits, prescriptions, meals, exercise, keeping in contact with friends
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and neighbors and being the spokesperson for the patient when that is necessary and that is why I think spouses and primary caregivers and the extended network of people around the patient are survivors too and that is why I refer to it as your cancer experience. Tell us a little about what you think some of the things are that newly diagnosed couples have to think about in the first few weeks following the diagnosis, things they should be aware of that may hit them over the head or pull the rug out from under them?
Sharon One of things I would suggest is reaching out to the people that you are close to that may want to help, that may give offers of help and to accept it. Mark and I have always been self sufficient and I mean, anyone that knows me, I am not afraid to speak my mind. I have got an opinion on everything and I will tell you if you want to hear it, but we have got some very very good friends that go back to when Mark was is in fifth grade, boyhood buddies of his that I have known now for my entire life just about and when we told them, they wanted to help, but we said they did not have to, but they really did want to help and they felt closer to both us by us allowing them to do something for us, even if it was to drive Mark to an appointment, or to cook dinner for us one night. So, I would say reach out to people and if they want to help, let them, you can choose how much you want to let them do or whatever, but it is a bonding experience, you do not know when they are going to need the same thing from you and it worked for us, I mean, it brought us closer to those people that have always been in our lives, but now they are closer and it has been wonderful.
Lamothe So, do not be afraid to ask a colleague for help and if you are the caregiver or the patient, do not be afraid to take the help. Do not shrug it off and say, I will be okay, I will be fine, because there will probably be enough people as you may have experienced that keep their distance from you when you are ill.
Sharon Exactly, and if they say they want to help and do not mean it, well shame on them.
Lamothe It is even worse when they do not follow through. We have a few minutes left and there was one thing I wanted to come back to that we discussed while we were off the air, and that has to do with hot flashes, just putting that out there and one or both of you can respond to that.
Mark Maybe I should set it up. My hormone therapy involved two shots of hormones in order to be in partnership with the radiation and after the first couple of weeks after the first shot the hot flashes kicked in.
Sharon What is ironic about that whole thing is that I went totally through a menopause and never ever had a hot flash, so for all the women in the world to see a man having a hot flash it was a joyous thing.
Mark Peel and his wife Sharon are cancer survivors. If you have questions or would like add your comments, visit yalecancercenter.org, where you can also get the podcast and find written transcripts of past programs. You are listening to the WNPR Health Forum on the Connecticut Public Broadcasting Network.