Chapter 13: Focusing on Work, Faith, and Hope During Cancer Treatment

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Chapter 13: Focusing on Work, Faith, and Hope During Cancer Treatment

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In this chapter, Dr. Yung talks about his experiences as a patient after his 1999 diagnosis with a rare bladder cancer. He sketches the medical dimensions of the disease, the slow process of diagnosing it, and his choice to have chemotherapy followed by radical surgery. He talks about his faith and his choice to have treatment at MD Anderson and have a true patient experience, not special treatment for an MD or VIP. Dr. Yung observes that his patient experiences have made him a better caregiver and advisor to the department when changes to the clinics and care deliver are planned. Dr. Yung talks about the different ways patients cope with a cancer diagnosis. He notes the special case of brain cancer patients, who lose cognitive function and their independence. Dr. Yung says that he advises patients that accepting their diagnosis early will help them avoid depression and other complications. Dr. Yung notes that he took on the Chairmanship of the Department of Neuro-oncology during his treatment. He felt he had been given extra time to use for his department. He lists the projects he wanted to push forward.

Identifier

YungWKA_04_20140707_C13

Publication Date

7-7-2014

Publisher

The Making Cancer History® Voices Oral History Collection, The University of Texas MD Anderson Cancer Center

City

Houston, Texas

Topics Covered

The Interview Subject's Story - The Patient; The Patient; Character, Values, Beliefs, Talents; Personal Background; Overview; Definitions, Explanations, Translations; Faith, Values, Beliefs; Portraits; Formative Experiences; Evolution of Career; Patients, Treatment, Survivors; Funny Stories; MD Anderson Culture; Dedication to MD Anderson, to Patients, to Faculty/Staff; Healing, Hope, and the Promise of Research; Human Stories; Offering Care, Compassion, Help; Patients; Cancer and Disease; This is MD Anderson; Dedication to MD Anderson, to Patients, to Faculty/Staff

Creative Commons License

Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 License
This work is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 License.

Disciplines

History of Science, Technology, and Medicine | Oncology | Oral History

Transcript

Tacey Ann Rosolowski, PhD:

For the record, today is July 7, 2014 and the time is and I’m on the 7th floor of the faculty center today in the Department of Neuro-Oncology talking with Dr. Alfred Yung, Department Chair. This is our fourth session together. So thank you very much for agreeing to this last session and with all of our re-schedulings and equipment questions and all of that we’ve --- we’ve powered through and we’re at our last session, so thank you.

Tacey Ann Rosolowski, PhD:

Well, I wanted to ask you today, we were talking before the recorder was on about some of your experiences as a patient at MD Anderson. So I wanted to ask you a little bit more about that. Last --- last time you mentioned that you were diagnosed in 1999.

Wai-Kwan Alfred Yung, MD:

Yeah. I was diagnosed with cancer in 1999, transitional cell carcinoma in the prostatic duct which is kind of an unusual place for transitional cell carcinoma. Transitional cell carcinoma usually either in the bladder wall, you know, or in the bladder entrance but in the prostatic duct is very uncommon. But on the other hand I actually was symptomatic for a few years before finally the biopsy revealed the cancer cell. I had multiple biopsies because of the --- because of the symptoms of urgencies and bladder obstruction. So I used to have to go to the bathroom a lot. So we had multiple biopsies at time initially thinking it may be just the congenital problem of the --- of the bladder outlet, too narrow to open it up and make the symptoms go away, but it didn’t. Until 1999 when they did some more tests and had some spontaneous bleeding. So the urologist took a much bigger biopsy and then discovered the cancer cell. At the time the cancer cell invaded some of the blood vessel. So we decided --- so the oncologist and the urologist decided that we should have chemotherapy first before radical surgery. So we did chemotherapy for five months I think and then followed by surgery. At that time, we decided to, David Swanson is the urologist, and David said, “Well do you want to have small surgery, just kind of scrape out the --- the wall or do you want to have more radical surgery to take out all your _______ () organ like the bladder and the prostate all at once. That would guarantee that there is no --- no tissue left for cancer to come back. Small surgery, you know, you keep your potency but you are leaving a lot of tissue for the cancer to come back.”

Tacey Ann Rosolowski, PhD:

Right hard decisions.

Wai-Kwan Alfred Yung, MD:

So we choose to have the radical surgery with reconstruction.

Tacey Ann Rosolowski, PhD:

So tell me about that shift. I mean, to go from being a cancer doctor to a person having cancer and seeing the disease and experiencing the disease in a totally different way. What was that change like for you?

Wai-Kwan Alfred Yung, MD:

Well, I mean I think, I --- my wife and I, you know, we grew up in church and we have very strong faith in God. So when we were told with this diagnosis we really just, you know, take it in the way of this is just another hurdle that we need to put it in --- use our faith and put it on God’s side and see what He’s guiding us to do. I mean we didn’t really go through a lot of anger and “Why me? Why me?” type stage. We really focused on next --- what next.

Tacey Ann Rosolowski, PhD:

Well I think it’s interesting that you, you know, you’re saying that it was sort of a joint experience, you and your wife. So it sounds like you have a really strong --- you had a really strong support system at home, which is great.

Wai-Kwan Alfred Yung, MD:

But when we were --- when I was deciding what to do, I mean, the first --- with the very first decisions that I don’t, you know, want to leave Anderson system. I want all my treatment --- treatment for cancer, we’re the best cancer hospital. I don’t want to go elsewhere for the cancer treatment because I don’t people to know that I had cancer. You know, so the first decision was to stay here whether it was chemotherapy or surgery. I trust my friends. So I talked to Logothetis and then talked to what’s his name, the oncologist that left. It’ll come back. I will have to find his name.

Tacey Ann Rosolowski, PhD:

Okay and that first doctor’s name was Peters? What was his first name?

Wai-Kwan Alfred Yung, MD:

No. The Chief of GU Medicine now. Chris ---Christopher Logothetis.

Tacey Ann Rosolowski, PhD:

Oh, Logothetis.

Wai-Kwan Alfred Yung, MD:

Chris Logothetis.

Tacey Ann Rosolowski, PhD:

Okay, got it. Uh-huh.

Wai-Kwan Alfred Yung, MD:

But it --- But it was, you know, it was --- he assigned it to one of his deputies --- one of his faculty that specialized in bladder oncology. Logothetis himself is much more into prostate. So we have --- I had to go through five months of chemotherapy you know weekly times three, rest one week, and then --- and then --- so a total of 15 weeks of chemotherapy with three drugs. Speaker Wow.

Wai-Kwan Alfred Yung, MD:

But, you know, I was ama --- I was in pretty good health even though the chemo is pretty strong other than just losing all my hair and my --- my blood count dropped only one time and I have really --- you know, I timed the chemotherapy such that I get my chemotherapy Friday night. I check into my hospital room because it’s overnight infusion. So I check into the hospital room Friday night, get my infusion done, and then Saturday morning I check out, go home and rest then come back to work on Monday. So for 5 months we go through this routine. But on the other hand that kind of experience was exactly how again like I said I wanted to behave like a patient, not a VIP, not a doctor. So I usually just go up to my room just like any other patient, check in, wait for my --- my chemotherapy and interact with the staff just like other patients.

Tacey Ann Rosolowski, PhD:

Was there anything about that patient experience that surprised you?

Wai-Kwan Alfred Yung, MD:

And I think it is. You know --- it is --- You get the feeling. At night it’s pretty noisy in the hospital because the nurse comes in to check you. So you understand when patients say. “I don’t want to stay in the hospital because it’s so noisy at night. I cannot sleep.” It’s true. You cannot sleep. Because the nurse has to come check you sev --- several times a night and also if your room is close to the nursing station a lot of people are talking out there all night long. You know. So these are real people that go and the food is really lousy no matter what. Our food is pretty terrible. And you also have to, you know, --- you have side effects from the chemotherapy you know but I think that the experience of our staff, --- you know, I think at MD Anderson we have a wonderful team of nurses and support staff. And I think most of our nurses and assistants are very good, you know, very compassionate to patients. There are some who occasionally they are going to be that slacker but otherwise we have a very good team.

Tacey Ann Rosolowski, PhD:

Did you observe? I mean did those observations and going through that experience, you know, from the inside, did that make you think differently about you know MD Anderson, about your own practice?

Wai-Kwan Alfred Yung, MD:

Well I mean --- I think, you know, it did not change my mind about MD Anderson. I mean it helped me to --- to really be a better manager or to be --- to really be a better advisor when people --- when management asks me what we need to do and how we can improve MD Anderson and also as a Department Chair how we want to --- how we want to really change things in our clinic and the way that we administer care to the patients because I have seen first-hand, you know, what kinds of issues that you run into as a patient. I --- When my IV doesn’t work, how fast do I get help? When I need to go to the bathroom, how fast did I get help? And when I have issues with one of the --- one of the drugs that I have is a steroid and steroid make you a nut, at night --- especially when you have steroids at nighttime --- especially when have steroids at nighttime you are agitated all the time. They make you feel like you pins and needles all the time --- pins and needles all the time, you know, and you cannot sleep. And when you go through that kind of experience you know what the patient goes through. When the chemotherapy makes you --- your stomach really queasy and you don’t feel like eating anything or always want to --- want to throw up. You experience it and then when you talk to your patients you know what they go through and you understand what he is talking about. So in a --- in a way that experience really helped me. You know, I don’t want to use the phrase “more compassionate” because I think I am compassionate enough without being a patient, but more understanding of what a patient goes through when you talk about or try to calm down their fears or trying to calm their nerves, you know, you can come in with more understanding there.

Tacey Ann Rosolowski, PhD:

Do you tell your patients that you’ve --- you yourself have been a patient?

Wai-Kwan Alfred Yung, MD:

Yes.

Tacey Ann Rosolowski, PhD:

Does that help create?

Wai-Kwan Alfred Yung, MD:

It does. I have many of my older patients, especially the patients who see me through those times. I still have a lot of patients that --- that, you know, saw me when I had no hair and up to this stage they say, you know, “Are you still okay?” No, I’m not --- I tell my patients I --- I know exactly what they are talking about because I am a patient. And, you know, I use my experience to encourage my patients that, you know, --- that you’ve got to have hope. We --- I am just a messenger. I always tell them I’m the messenger. I don’t have the ultimate answer for you. I give you the medicine that I give everybody, but it may work on you and it may not work on you. He’s the guy --- upstairs guy who is in control. You know, you just have to have the hope. This is a battle. you know.

Tacey Ann Rosolowski, PhD:

I can imagine, I mean I think if a physician told me that you know he or she had experienced whatever I was going through I think that would really calm my --- you know calm me down and make me feel like, yeah this person kind of --- ki --- really knows.

Wai-Kwan Alfred Yung, MD:

It depends on the patient. Some patients really, you know, have such a high anxiety level and high anger level that, you know, it’s --- the anxiety and anger overcome everything else.

Tacey Ann Rosolowski, PhD:

: Is that particularly the case in dealing with brain cancers? I mean I’m --- you know all cancer is so difficult to deal with. The diagnosis is so difficult, but I’ve --- I’ve always thought that a diagnosis of brain cancer has you know kind of a special urgency because the brain is so tied up with our identity, I mean who we are as a person.

Wai-Kwan Alfred Yung, MD:

Well, yes. I mean I think --- I think the --- the anxiety level is higher mainly because it is so you know generally perceived that this is a --- you know especially a brain tumor is a deadly disease --- a hopeless disease. No one --- No one lives, you know. So --- But on the other hand, my observation is also --- depends on the makeup of the patient. Whether the patient is a control person or not a control person. I mean I think --- I don’t think brain ---- malignant brain tumor is any different from lung cancer or breast cancer you know. The only difference --- I think the only difference --- I would say there is a difference. The difference is that when you have cancer in the brain --- tumor in the brain, that the unfortunate thing is because the tumor is in the brain it kind of destroys your --- your cognitive function. It des --- destroys your --- your orientation, memory early. And so you lose your brain function early as opposed to cancer in the lung whereas you could be totally intact up here with the body being rotting away. But the problem with brain is that you lose your faculties. You become, you know, dependent on people and a lot of type A, high function people, really cannot handle that well. You know especially when high function people feel that they are only functioning at 70% because part of the memory is gone or part of the --- where they were able to function at 130% of their brain function and now they are only functioning at 70%. They don’t like it. And also now they depend on what the doctors say, what my wife --- what the caregiver has to say and they used to give order. So it leads to a lot more anger especially on the high function people. You know a lot of anger and a lot of depression.

Tacey Ann Rosolowski, PhD:

What do you do as a clinician for people like that?

Wai-Kwan Alfred Yung, MD:

Not much you can do. You know hook them up with psychiatrist early or encourage them and say this is going to happen. The more you can give the more you can --- The sooner you can accept. My emphasis has always been the sooner you need to accept --- the sooner you can, the sooner the better for you. You need to accept that you are not the same person. Yes, you are CEO of the big company, you functioned at 130% of brain capacity but you know --- you --- now you only --- you only function at 90%. In general 90% is very good already so come on guy accept. 90% is better than a lot of people. Don’t just keep drilling on that “Gee, I was 130% before, why can’t I be 130%? I don’t like 90%.” So you are going to be depressed if you do not like your 90%. You’ve got to accept, 90% is just as good and function at 90% and not push yourself back to the 130 because you’ll never get there. You’ll get frustrated and you’ll get depressed. Some people, you know, --- The people who do well is the ones that accept it. They say, “I’m stepping back. I accept this.” Those who cannot do that they go into a deep depression and so some do not do well treatment-wise.

Tacey Ann Rosolowski, PhD:

That’s a very hard situation. I remember last time you also told me that when you were going through your treatment and all of this experience as a patient, I mean you were also really being jettisoned into an entirely new administrative role so your own administrative responsibilities had changed dramatically. How do you feel --- Was there --- What was that collision like? I mean here you were a patient and then suddenly, bang, you know you had this whole new role to take on. Did that help? Did it hurt? You know what --- what was that like?

Wai-Kwan Alfred Yung, MD:

Well, the illness other than the you know the tumor and the surgery and the recovery from surgery, that five to six week period. We did not --- Even chemotherapy did not slow me down that much. But surgery and recovery from surgery, that five to six weeks of recovery time slowed me down. But as soon as I recovered from the surgery I was, you know, back to 100% active and my perspective at the time was that I’m given extra time so --- so now I have to use the extra time properly you know to the best of . . . God had given me the time I have. Because with the --- with the chemotherapy first and surgery later at the time of surgery the tissue that got removed showed almost no cancer cell left so what we call pathological res --- you know remission. The chemotherapy killed off all the tumor cells. So that was a good prognosis, a good prognostic factor that we were able to achieve pathology CR --- pathologic CR and then --- then the surgery becomes a cleanup job. And also the other thing is --- is that you know David, the surgeon, was able to --- to instead of when --- when you have to remove the bladder you know you either have to create a neo-bladder or use the bowel to create a bladder so that you can make internal --- you know have an internal reservoir or you have to wear an external bag if there is no --- not enough room to create. You know I told David I said “Try your best. Even though you may need to get rid of all the tissue but try your best and see if it’s possible save enough room to put a bladder in so that my quality of life would be a lot better without dealing with the bag.” Even though I have to deal with the incontinence but there is no --- no real sphincter control but it’s still much better than changing a bag all the time. So we were able to have a neo-bladder so --- so I mean I function almost without much disability after the surgery. I’m really, you know I look like at it as God has given me the extra time, so I’m going to use it to do the program, you know.

Tacey Ann Rosolowski, PhD:

What were some --- Were there some projects or you know pathways that you identified that you wanted to use with --- wanted to go down with that extra time? You know were there things that okay I’ve been given this time, I really want to do THIS. Was there anything like that?

Wai-Kwan Alfred Yung, MD:

Well, I mean I wa --- Yes. I was going to --- to really build a world class brain tumor research program here you know and kind of continue what Dr. Levin, my previous boss, had started you know with Dr. Sawaya so I worked closely with Dr. Sawaya. We --- I --- I was given --- given positions and authority to expand the department, you know, and bring in more scientists and develop an area of drug development so that --- so that we have a team of people who develop new drugs and a team of people to look at creating virus for viral devel --- To create a laboratory and clinical program that can go you know back and forth in between it. What we call nowadays a translational program so that the clinicians and the scientists that work together. We go back and forth and we also perform more cohesive collaborations with Neurosurgery, Pathology, and Radiology to --- to really create this team so we go after the specialized center grant --- the SPORE grant.

Tacey Ann Rosolowski, PhD:

Yeah we talked last night --- last time about how you were building those networks.

Wai-Kwan Alfred Yung, MD:

So we --- we were finally successful at getting the SPORE grant after one trial. We were not successful with the first round in 2006. I think we were not successful there but we finally got our grant funded in 2009 --- no 2000 --- 2008. The second round was in 2008. We got funded in 2008.

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Chapter 13: Focusing on Work, Faith, and Hope During Cancer Treatment

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