little bit. Your cancer was first spotted by your dentist during a routine exam. The lesion was a whitish area on the side of your tongue that you suspected was a reaction to some recent dental work you had had. After a couple of weeks, the dentist checked you again, and he found that the lesion was still there, and he referred you at this point to an oral surgeon. The surgeon listened to your story, without mentioning the possibility of cancer, and did a biopsy. The results showed that you had a stage I (maybe bordering on stage II) squamous cell carcinoma. You underwent a single five-day round of chemo with 5FU. Three weeks later you underwent surgery in which part of your tongue and several lymph nodes in your neck were removed. You had a tracheotomy for six days. You are now considered cured, and you've had check-ups every four months. We're delighted that you would join us today, Steve, and share your story with us.
Steve:
Well, that sound's like my story all right.
Dick Foley:
All right. [laughs] And how far down the road are you, now, from your treatment?
Steve:
About three years and a few months.
Dick Foley:
All right--and counting.
Steve:
And counting, yes.
Dick Foley:
Also joining today is Cindy. Cindy is a 45-year-old survivor from Missouri. Cindy is married and has three adult children. The youngest two live with her. Welcome to our program, Cindy.
Cindy:
Thanks very much.
Dick Foley:
Now, your story began when you were having some trouble eating, and you found sores and a lump on your tongue.
Cindy:
That's correct.
Dick Foley:
So you went to a doctor and were referred to an ear, nose, and throat specialist. The doctor scheduled an operation for the very next day. He must have seen something that alarmed him.
Cindy:
He actually scheduled it for four days after my initial exam. Yeah.
Dick Foley:
OK, but pretty darn soon.
Cindy:
Yes.
Dick Foley:
The surgery entailed having the tumor--which was stage I--and about 10 percent of your tongue removed.
Cindy:
That's correct.
Dick Foley:
You had one more operation, then, in which an additional five percent of your tongue was removed. You are now cancer-free and have follow-up exams every eight weeks. And how far down the road in this process are you, Cindy?
Cindy:
Almost a year and a half now.
Dick Foley:
Almost a year and a half. Well, good for you, and thanks very much for being with us today.
Cindy:
My pleasure.
Dick Foley:
Our final guest is Sam. Sam is a 60-year-old physician and a tongue cancer survivor from Florida. Sam is married, has four adult children. Welcome to the program, Sam.
Sam:
Thanks very much.
Dick Foley:
You found a lump in your neck and suspected that it might be cancer. You talked to a colleague and told him that you were going to take some antibiotics, and if the lump did not improve, you would seek attention from another doctor. Well, your condition didn't improve. Your partner performed a needle biopsy, and the results showed that it was probably cancer, but not completely certain. So you underwent an open biopsy and had lymph nodes removed. The cancer was then found to be metastatic squamous cell carcinoma, the common type of head and neck cancer, and it had originated from a small area at the back of your tongue. You suddenly found yourself in a reversed role--that of a frightened patient. Your best friend, who is a radiation therapist, treated you with 75 radiation treatments in about seven and a half weeks. And you now have been cancer-free for, is it 10 years, Sam?
Sam:
Ten years.
Dick Foley:
Good for you. And congratulations, and thanks for being with us today.
Sam:
Thank you very much.
Dick Foley:
We'll explore that transition for you, too, going from doctor to patient. Tell our audience what kind of medicine you performed and specialized in.
Sam:
Well, the irony of it all is that I'm a head and neck cancer surgeon. And although I just retired last year, this was one of the main things that I did. So the irony of having a cancer that you treat every day certainly did turn the tails on me, and made me understand even more about my own patients, and of course gave an extra boost to my patients, with them knowing that I knew exactly how they felt.
Dick Foley:
From personal experience.
Sam:
From personal experience.
Dick Foley:
The ultimate irony, indeed.
Sam:
The ultimate irony.
Watching Out for Recurrence
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Dick Foley:
Every cancer survivor, I think, worries about the possibility that his or her cancer will return. I know that was true for me. Steve, in your case, what triggers thoughts for you that your cancer may indeed return?
Steve:
[laughing] Probably just normal life. I remember being at this head and neck cancer support group that I go to, probably a year ago, and we had a person come in who was newly diagnosed. And he asked the group how long we went between times when we thought about cancer.
Dick Foley:
Mm-hmm.
Steve:
I really wanted to say, "A whole day." But to be honest with myself, other people started to say, "An hour. Two hours."
Dick Foley:
Yeah.
Steve:
And at that point, I think it was something like that.
Dick Foley:
Do you find, though, Steve, over time those intervals get longer?
Steve:
Yes, and I think also that the--probably the more important thing is that I'm not panicked about it.
Dick Foley:
Yeah.
Sam:
Certainly in the first six months or eight months, or something like that, when I thought about it, thinking that it might come back. And now I think about it, but it doesn't have the same fear associated with it.
Dick Foley:
Early, early on though, Steve, how did you cope with that terror?
Steve:
Well, one thing that helped a lot was to be able to complain to my wife about it.
Dick Foley:
[laughs]
Steve:
I'm not a complainer. I almost have to give myself permission to complain. She was very good at encouraging me to do that, and listening to me and understanding that I'm just talking. She doesn't have to solve the problems or whatever. It was really helpful to me to be able to say, "I felt this lump here. I know it's probably nothing, but I'm worried about it."
Dick Foley:
Yeah.
Steve:
It helped to sort of get it out there so that you felt like you weren't the only person knowing about that, or it was a secret or something of that sort.
Dick Foley:
Never underestimate the value of a good listener, huh?
Steve:
Yeah, yeah.
Dick Foley:
All right. Now, Cindy, your profession also was in medicine. You are--and were--in the nursing specialty. Do you think that having been a nurse helps you or hurts you in dealing with your own fears of recurrence?
Cindy:
It probably gives me a little more knowledge of where I can go out and search. I had an issue with my original head and neck physician that did the original surgery, where I was concerned that I wasn't getting a lot of the answers that I needed to be appropriately preventative. How I can be a proactive—proactively prevent the cancer from recurring, or what I can do as myself? So I happened to go online, and being in contact in the community, I found somebody that I noticed on a Web site that worked with a head and neck oncologist that worked at the university here in town—and made contact with her, and ended up changing my care over to this physician, who I've been following now for about six months.
Dick Foley:
OK.
Cindy:
And really feel like I've--there's a lot of fear out there, absolutely, that it can recur, but--I'm so early in it, too.
Dick Foley:
Sure. But would you agree with Steve, that having somebody that you can talk to about it is a big help?
Cindy:
It's a huge help, and having friends and connections and people. I think the friends and your family are what help you tremendously.
Dick Foley:
Sam, you're at the ten-year mark, so the fears of recurrence may not be quite as worrisome as they might once have been. But in the early going, how did you monitor yourself for signs--any signs--that might indicate a recurrence?
Sam:
Well, since I originally actually felt the lump myself and had felt lumps like that for 28 years of private practice, needless to say, I examined my neck. But of course, I had to have somebody--namely my partners, including, as you mentioned, my best friend, who was the radiation therapist that treated me-- examine my throat very, very often. And we went about once a month, once we were through the treatments and I was well. And that continued on, and to this day I still get check-ups. And you know, I think that there's nothing better than having reassurance with those examinations. You just have to depend on those. There was a couple of times during those times when I actually had a little bit of swelling in my neck, and we had to do an MRI. And luckily for me, it turned out OK. It was just somewhat of a--what we call a lymphatic obstruction, because I had twice had irradiation therapy.
Dick Foley:
OK.
Sam:
That, you know, that obstructs some of the lymph flow, if not all. And so sometimes when you get a little sore throat, which of course is another panic situation, you can get a little bit of swelling in the area. And of course, that makes you run to the doctor in a hurry. But I think one of the most important things is that when I began--when I realized what I had to face, I immediately said, "Look, I am a patient. I am no longer the doctor here. I will do what you tell me." Sometimes health care workers are not the best patients, but I tried to be, and I think I was. But I followed orders, and I think that helped me a lot to get out of the physician role and say, OK, I'm a patient, and I need spiritual as well as support from the family. And, also because I've been so involved with the American Cancer Society, the American Cancer Society family alone gave me incredible support, as well.
Dick Foley:
But still you must have found yourself feeling like you had a foot in two different buckets. You know?
Sam:
Absolutely.
Dick Foley:
You're looking for that reassurance and yet being called upon as a physician to provide that very reassurance to your patients.
Sam:
Absolutely. And, also, it was hard to separate. When I went back to work in six months, it was hard for me to separate my patients from me.
Dick Foley:
Mm-hmm.
Sam:
Every patient I saw cancer with, I saw in me, and it was emotionally difficult. And it took me a couple of years, actually, to get to where I felt like I could see somebody else's cancer and not kind of have a personal panic attack along the same way.
Dick Foley:
Trying to maintain that objective distance, if you will.
Sam:
Absolutely, because you couldn't--you had to maintain that, and also, because they knew I had been there, they latched onto me even more than they normally do.
Dick Foley:
Sure.
Sam:
And I'm proud to say that I am one of those kinds of physicians that spends a lot of time explaining to people exactly what they're in for and how they can help me help them. But it was very difficult, and it was an added stress to me to have to play both patient role and physician role.
Dick Foley:
I can clearly understand that.
Living with Side Effects of Treatment
|
Dick Foley:
Let's talk a little bit about side effects and, Steve, I'll come back to you to begin. What have, for you, been some of the side effects of your treatment?
Steve:
Well, probably the first thing I should say is that being in this talk show, it's a thrill to hear three people who've had tongue cancer and who all sound great.
Cindy:
[laughs]
Steve:
Because, you know, the cliché is that people who lose part of their tongue really sound awful. And I know some people from my support group that sound worse, though they're still understandable. But it's a big fear that people have. And so the first thing I'd like to say is that I feel lucky. I'm lucky that I'm alive, and I'm lucky that I sound fine and I look normal.
Dick Foley:
Was there a time, Steve, when speaking was difficult, challenging?
Steve:
Oh, yes. And the first few months were very difficult in all kinds of ways. Eating was incredibly difficult for a couple of months after my surgery. I could speak almost immediately, but it was really speech that was appropriate for talking to my wife, not necessarily to go back to work and to conduct business.
Dick Foley:
Sure.
Steve:
And I was pretty lucky there, too. I had just a few deficits. I couldn't say "s" very well, and so forth, but with some practice, that came back over a period of months. Probably the thing that's most surprising to me, though, was how long these things take. I do some volunteering for an organization that puts people in touch--survivors in touch with newly diagnosed people. And one of the things that I always tell people who are just about to have surgery is that it takes a very long time to heal. And maybe most of the healing happens in six weeks, but there's still healing happening a year later, a year and a half later--especially with something like a tongue that is used for so many things: for eating, for speaking, for cleaning your teeth after you've eaten. Even that little bit of flexibility really makes a difference. And what you are getting after three months or four months is not everything that you're going to get, probably.
Dick Foley:
Do you feel, Steve, that your doctors adequately prepared you for what you would be facing post-surgery?
Steve:
Ah, no. No, my doctor, the surgeon in particular, was really of the opinion that the more things you know, the more things you'll worry about. And for some people that may be the right approach. For me it was, I think, the wrong one. I'm a scientific sort of person. I'm in computers, I want to know everything. And then I'm going to be worrying anyway, so I would rather be worrying about the right things.
Dick Foley:
But he didn't ask you how much or how little you might like to know?
Steve:
He really didn't. I have great respect for him as a surgeon, he was a great surgeon. It was a personality thing.
Dick Foley:
Sure.
Steve:
I think I got most of the information that I wanted, eventually, but there were a lot of things that would have been nice if he had mentioned. I had the partial neck dissection, and I noticed after the surgery that there was a big spot under my neck here where I can't feel anything. And I mentioned that to him, and he says, "Oh, yeah, that's normal. It goes away after a year." I asked him six months later about it, and he said, "Well, it doesn't always go away completely. It never gets back completely normal." And that's the sort of thing you think, well, gee, I would have liked to know that ahead of time. I can't really do anything about it, but at least when I noticed that I didn't have any sensation there, I'd say, "OK. That's that thing I was warned about."
Dick Foley:
Sure.
Steve:
"That's normal."
Dick Foley:
So better communication would have been helpful for you?
Steve:
Yes.
Dick Foley:
Yeah. OK. Cindy, because of your surgery, you did indeed also have some difficulty speaking. How did this impact your life, and what did you do to overcome it?
Cindy:
Well, after my first surgery, I was intent on becoming a proactive patient at that point. And I asked for a speech therapy visit where I went, and I obtained the exercises and things that I would need during my recovery after my second surgery. She also helped me learn how to eat, how to move food into my mouth and be able to eat during my recovery. And I also visited my surgeon again and had him take a look in my mouth. Just make sure things were--I mean, it felt like things were very tight, tight, tight. I kept trying to explain to people. And my speech was a lot worse after my first surgery. And I think being proactive, being in front of people, getting the information that I truly needed helped me get through it better a second time. The first time, as Steve and Sam have said, you're horrified--
Dick Foley:
Yes.
Cindy:
--as far as your diagnosis, what's going to happen. You look up, you look on the Internet, find information that you can, but as a newly diagnosed patient it's very difficult to look at some of those things. So the second time around, I had decided that I'm going to be proactive. I'm going to find out what is the best treatment, what is the best thing I need at this point, and how can I help myself along. And I also appreciate the comment about the good speech. Because it does take you a while to get to a certain point. And I still have times where you hear it yourself or you feel it yourself. So when--I don't remember if it was Steve or Sam made the comment that--how often do you think about having the cancer or having it recurring? It's something that you feel all the time and--or that I'm currently feeling all the time. So I, at this point in my survival period, I actually am young enough that I'm still feeling it and still thinking it on a regular basis. But it's great to hear a couple other people at this point in their lives. I appreciate the opportunity.
Dick Foley:
When you were having difficulty speaking, Cindy, would you avoid situations?
Cindy:
My problem is I've worked in the insurance industry--
Dick Foley:
Oh, my. [laughs]
Cindy:
--for about eight years--
Dick Foley:
Yeah.
Cindy:
--and I have to do numerous presentations. And no, I went right out there.
Dick Foley:
You plunged back in.
Cindy:
I had to plunge right back in. And I had some great, great people that surrounded me during this time that I worked with, wonderful friends who are still very--actually in touch with each other on a regular basis. But no, I spoke within the medical community on a regular basis, and it's another piece of being that proactive, that it's not going to get me down, that this is something that I'm going to fight and prevent.
Dick Foley:
We're going to explore the whole proactive issue in a minute, along with, too, finding support in getting through these experiences. Sam, am I correct in assuming you did not have a surgery as part of your treatment?
Sam:
I had the lymph node, the solitary lymph node, removed because the needle biopsy wasn't for sure. And they couldn't even see it on exam, so I had a very tiny base of tongue cancer, but it was obviously a nasty little guy because it metastasized to my neck as my first sign. And, as probably everybody on the show knows by now anyway, that many times in head and neck cancer, the first sign is not something in your mouth. You feel a lump in your neck.
Dick Foley:
Yes.
Sam:
Of course, a lot of times we can't find the primary. We can't find where it came from. But in this particular case, because of that, I had the lymph node removed and I went to--they took me to surgery and looked down in my throat, and they saw a tiny little area right at the very depths of the base of my tongue that was bleeding. Didn't even look like a tumor.
Dick Foley:
Oh, I see.
Sam:
And the biopsy said, of course, it was squamous cell.
Dick Foley:
Right. And so you had a great deal of radiation. How did that impact your tongue, and did it present for you some speech difficulties?
Sam:
It presented a lot of difficulty. Twice-a-day radiation which is, depending on the part of the country you're in, is more or less acceptable. And I didn't have any chemo, so that was what two different medical centers felt that I should have if I wasn't going to have any more surgery. And I didn't, because again, I didn't want to lose the base of my tongue, because if you lose that part, you've got to reconstruct it. So you're talking about flap surgery and a lot of surgery, and I would have never gotten back to, I don't think, where I am now.
Dick Foley:
Yes.
Sam:
But the twice-a-day radiation therapy was extremely difficult. A lot of pain, total loss of taste, and the driest mouth, and to this day, still a very dry mouth because radiation killed my saliva glands.
Dick Foley:
Yes.
Sam:
Not that it needed to, but it was in the zone of the radiation therapy. So that's one of the things that was very difficult, and it made my speech sound like I was tongue-tied if I couldn't have a little sip of water. And I do a lot of public speaking, too. And I would just about always, if I was there--I mean, I had to have that glass of water. And to this day I don't go very long without a little sip.
Dick Foley:
Mm-hmm. I'm wondering if it's true for you, Sam, and for the other two of you as well, that when speech was a real issue for you, if you would ever just simply tell people what your situation was so they would understand? Anybody want to jump on that?
Cindy:
At first I--and this is Cindy [laughs]--at first I wouldn't tell anybody. I currently do if occasionally I get tired and my speech--I have a harder time in the evening time a lot of times with my speech--
Dick Foley:
Right.
Cindy:
--if I have done a lot of talking through the day.
Sam:
I've had occasion--I still, because of the radiation, because the little incision I've had on my neck and the significant amount of radiation, I've got a little bit of a dent, if you will, on my neck, and it doesn't tan like the rest of my skin. So occasionally I've had people ask me, "What happened to your neck?" And I would of course tell them immediately, because I think it's important for people to talk about cancer, no matter what it is. Because when I started in practice 28 years ago, people didn't want to talk about it. Steve mentioned that he was in the Internet business, but that wasn't around 20-some-odd years ago. So when I would begin to try to tell people about their cancers, they didn't want to hear about it. They just said, "Doc, take care of me." That is not true today, and it is certainly naive of any physician to not know that it's very important for information to be as much as the patient can handle, because I really do believe that information is power.
Dick Foley:
Yeah, and I think a lot of patients, if not most patients, would agree with that. Do you agree with the approach, Sam, where you would simply have an open discussion with your patient and ask them how much or how little would they like to know?
Sam:
Actually, I can usually tell by the expression on their face when they want me to shut up. [laughs] I have a tendency to be able to read people pretty well, and I can tell either they're starting to get uncomfortable or I'm overloading them, and I back off. But most of the time patients really do appreciate that extra time.
Dick Foley:
OK.
Sam:
In fact, you know, I for years actually had other doctors'--other head and neck cancer surgeons'--patients come see me just to talk to me, even though they didn't switch to me necessarily. And so I think it's an important message, certainly for the medical community to realize that in this day and time, you just have to take the time to make sure those patients' questions are answered. And of course, a lot of them don't have the ability to ask questions, they don't even know what to ask. So you've got to assume that.
Dick Foley:
Yeah, and try to anticipate some of those questions.
Sam:
Absolutely.
Steve:
This is Steve. If I could just barge in a second here.
Dick Foley:
Sure.
Steve:
There's also an interesting issue with the cancer survivor talking to other people, friends and family members and things like that. Sam was mentioning people asking him about his neck. In my case, the thing that's most visible is the tracheostomy scar, which I was actually self-conscious about at first, and now I sort of view it as almost a badge of honor. And I have had people ask me how I got that scar. There is the same kind of interesting problem there in figuring out how much people want to know. I think when you've been through cancer, it puts you in a different group of people. There are people who've had cancer and people who haven't had cancer. And to some extent, if you've had it, you will understand some things that people who haven't had it can never quite get. And when somebody who hasn't had cancer asks you about it, you sort of don't know how much to tell them. Some of it is about their fears, and some of it is genuine concern. By contrast, I've noticed that when I meet other cancer survivors, this group I volunteer with, for example, that they're all very comfortable with talking about their cancers because, sort of, it's a club. We've all had the same kinds of experiences.
Dick Foley:
Right. Now we kind of focused on speech in terms of our side effects discussion. Any other side effects besides the scarring, of course, that might have to be explained? Any other side effects that were of particular note to any of you?
Steve:
This is Steve again. Part of what I was saying before is you sort of get used to these things, so it becomes what's normal for you. I still have--my tongue is not as flexible as it used to be, so I have to brush my teeth after every meal, because I can't really clean the food off of my teeth. You know, when I get tired, I can't talk as well. There are certain--I basically have no problems eating, but you still know that it's not the same. And Cindy's comment about tightness. Certainly you wake up some mornings and my neck is very tight or my tongue is very tight. The next day it's gone. These are all things where before I had the cancer, if you'd told me it was going to be like that, I would have thought, oh, it's terrible, you know, my neck being tighter and my tongue not being able to reach all around my mouth. Or my mouth being somewhat dry, and it's not as bad as having radiation. I did lose one, the smaller salivary gland, with the surgery. But these things all seem relatively minor these days. You sort of get used to it. You say, "Well, that's the way I am now." Occasionally you think, well, it's unfortunate, but it's not a serious problem.
Dick Foley:
And I'm alive.
Steve:
Right. That, of course, is the big thing.
Dick Foley:
Right. [laughs] The bedrock realization.
Cindy:
Absolutely.
Staying Informed and Proactive
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Dick Foley:
We'll move on to a word that you used, Cindy, earlier, and that is becoming the proactive patient. I'm wondering, in your case, how you went about becoming well-informed, and how did that help you?
Cindy:
Well, the first thing I knew was I was not going to not eat, not be able to eat--or at least understand how I could possibly get food down. Going without food for the better part of a week, a week and a half post-surgery was pretty difficult. I went home on oral steroids, and once I came off of those it was like coming back to my first day of surgery again. The swelling came back, and then I had another few days of--as the swelling went down. So I lost a considerable amount of weight post-recovery, after my first surgery. And I became the patient absolutely, as Sam was saying, but I also didn't become the informed patient. Things happened so quick. I didn't give myself or let myself go to that place yet. With my second surgery, I knew at that point when it was scheduled what I was in for, and I wanted to find out what I could do to make it somewhat easier for me. I met not only with the anesthesia, because I did have some problems with the pain management post-surgery. And I was a 23-hour patient in the hospital, so they kept me overnight. So we walked through pain management at that point, what I could use. And as I said, I met with the speech therapist not only to get my exercises or understand what I needed to do, but also how I could eat. How I could move food around in my mouth? As Steve said, you have a tendency--I still have--part of my tongue is still numb, part of my mouth is still numb. So I still have some of those nerves that aren't there yet, but they feel like they're waking up. So it's like a foot kind of coming awake again, where you have the tingling, and that's how that side of my tongue feels all the time. And then the next step that I did is, later down the road I found a physician that would work with me and talk with me and let me come to him as frequently as I needed when I did panic periodically. Because I absolutely--proactively--do my own oral exams, too.
Steve:
Can I throw an extra thing in there, too?
Dick Foley:
Absolutely.
Steve:
One of the things that I wasn't warned about is how many things in your mouth, your neck or whatever, can feel like lumps and aren't really a problem.
Cindy:
I agree.
Steve:
You know, for example, there's scar tissue, and you're told, "OK, go home and check your tongue, check your neck for lumps." And, I mean, there's lumps all over the place because of scar tissue. And eventually you get to recognize, oh, yes, that hasn't changed, that's scar tissue. But when you're only a month or two after surgery and you feel this lump, this has got to be cancer coming back--it's hard, it's big. And that was something just was not at all explained to me.
Dick Foley:
And frightening.
Steve:
And frightening. Yes.
Dick Foley:
Steve, you were one who said you didn't feel you did get the information, at least from the medical team, or specifically from the surgeon. Did you go out and seek information for yourself? And where'd you find it?
Steve:
I did find a fair amount of information on the Internet. I did get involved in this head and neck support group, although that was later, like a year after surgery. And you won't be at all surprised to hear that I went there thinking I would be helping other people, but every time I went I learned something for myself. And I did ask questions of my doctor. It wasn't that he refused to answer questions, it's that he didn't volunteer information. So when I heard of things or wondered about things, I would remember them, and I would ask them when I had my visits with the doctor.
Dick Foley:
Was it a difficult process for you, Steve, do you recall, to become proactive in your care? To really become an active part of your health care team?
Steve:
Well, it doesn't feel like it was difficult. There's sort of a balancing act there, because on the one hand you want to trust your doctors. You want to evaluate the doctor and decide this is the right one for me. I think this is the right treatment. And then trust the doctor at that point. When I saw this surgeon, we went through some options, and he was mentioning different ways that this could be done, and I said, "Look, you're the doctor. What would you do if this was you?" And he told me, and that's what I did. I suspect that's what he would have done anyway, but that kind of focused him, and he gave a particular answer. So part of it is that you do have to trust the doctor. You can't really figure all of this out yourself, even if you're smart. You don't have decades of experience as a surgeon or whatever. But you also have to think about the things that are bothering you, and think about what the issues are for you, and bring those up. There were certainly plenty of times in the process where I asked about something that was bothering me, and I found out something that I needed to know, or got some additional help or something like that--which I don't think I would have unless I were trying to pursue that, trying to find the answers to the questions that I had.
Dick Foley:
Sure. Sam, you talked about bringing a real sharp focus to trying to step out of the physician role and into the patient role, but that's probably a lot easier said than done.
Sam:
Oh, absolutely. It was, in fact it was only partially successful, because, as I said, while I was away from my practice for six months, it wasn't hard, because all I had to do was be the patient. But when I went back, it made it very difficult. But I also realized that I had a responsibility that was even greater than I had before, because patients would feel like I was one of the team, even more than before. And so I really felt an obligation to them, and it did cause some difficulty. And one of the things that I'd like to bring up is anybody going through cancer--and I didn't diagnose this because I was on a lot of pain medicine and I was as weak as a cat--and I just, I look back and I think, you know, some of those symptoms may have been depression.
Dick Foley:
Oh?
Sam:
And I think the psychological effect, whether you're having a huge surgery or even just a less huge surgery, the psychologic impact on you is great. And it's something that doctors don't know much about. They don't ask you if, you know, "Are you feeling depressed?" Well, you're feeling tired and you're run down, and all this, that, and the other. But it's somewhat hard, not just as the physician, but anybody, to say, "I think I'm depressed." I think physicians have to focus in on that. And I even brought that up to my doctors later--that they ought to be a little attuned to that. I didn't get on any medication. But I think, retrospectively, I would have liked to have tried some antidepressants early on, to see if that would have helped me, because I just felt so down. But, again, I just blamed it all on the side effects of the radiation.
Dick Foley:
Mm-hmm. Now looking back, and again you have to look back a ways, would you have done anything differently in your care?
Sam:
The only thing I would have done differently is I would have gone ahead and had a tube stuck in my stomach. Because when you have as much radiation as I did, I could not, I mean, drinking water was difficult. And drinking Ensure, it would take me an hour to drink a can of Ensure because I had such a small passage in there to swallow through. And I would choke frequently. That's another thing that I don't know if Cindy or Steve had problems with, but when you first start trying to eat and swallow, it's easy to get choked. It goes down the wrong way.
Steve:
It's bringing back memories. Yeah.
Cindy:
Yes, it absolutely does.
Sam:
It's very frustrating. Plus just sleeping was very difficult for me. Because of all the swelling in my throat, I would wake up choking at night, and so I had to sleep sitting up for a long time. But the thing that happened to me--and it was just my bullheadedness--was that, and the doctors recommended this--OK, they wanted to do what was called a PEG [percutaneous endoscopic gastrotomy] tube, where they would actually put a tube right into my stomach and feed me right through the wall of my stomach. And because I didn't do that, I lost 57 pounds. And I probably prolonged my healing because of that. And so I would certainly say to the audience that if you are not able to swallow and keep your caloric intake up, certainly after a few weeks, if it's recommended, don't be afraid of it.
Dick Foley:
To use the feeding tube for a while?
Sam:
Absolutely. Of course, they talked about putting it down through my throat, and I said [laughing], "Yeah, you've got to be kidding me. There's no chance of that all there." But normally what they do is they try to do what is called a PEG tube.
Dick Foley:
Right.
Sam:
And I should have done it.
Dick Foley:
Sam, you mentioned also that--was it your radiation therapist who also lost a good deal of weight?
Sam:
[laughing] Yeah, he was--
Dick Foley:
And that's a great story. [laughing]
Sam:
He was so nervous about taking care of me, but believe me, the man is a genius and very well-trained. I mean, he even took me down to where he trained. And we got opinions of some of the biggest head and neck physicians in the country, and they had nothing more to offer than my friend did, and he was in my home town. So there was no reason not to go--there was no reason to go elsewhere. And the support system of home is worth very much, and it's very difficult for people to have to go away and have treatment. But he was so nervous over my treatment, he lost 30 pounds just because he was so worried about me. [laughing] Of course, it turned out it was a good thing for him. I mean--I wasn't paying attention to the fact that we both were kind of shrinking but he was so worried about me. But he did a fabulous job, I mean, as far as the radiation. But it was difficult. And just looking back and realizing the look on my friends' and family's faces. I mean, when they would see me having lost that much weight, you know obviously I looked pretty bad. And it was-- I saw the pain on their face and I thought, God, you know--I'm feeling for them, too.
Dick Foley:
Yes, exactly.
Sam:
Everybody suffers when you have cancer. It's not just the patient. In fact, sometimes I think it's the family and the friends can suffer almost more than the patient.
Dick Foley:
Boy, I think it's so wise for us to be mindful of that. Cancer has such a powerful impact, not just on the patient but on all of those who care for him or her. And, you know, even though the patient may be undergoing some real stress and duress, I think he or she should be mindful of what the others around him are going through, too.
Sam:
Absolutely.
Dick Foley:
Cindy, how much weight did you lose?
Cindy:
In about a week and a half, 13 pounds.
Dick Foley:
Wow.
Cindy:
So not quite as traumatic as that.
Dick Foley:
Steve, how about you?
Steve:
Well, I lost about 10 pounds in the chemotherapy and about 10 pounds in the surgery.
Dick Foley:
Did people remark to you about your appearance when you had dropped a total of 20 pounds?
Steve:
Well, the people that I was running into were all people who knew that I'd had the surgery--
Dick Foley:
OK.
Steve:
--so they weren't surprised. No, there were other things that you could see as well, a scar and so forth.
Dick Foley:
Sure.
Steve:
It wasn't just the weight loss. I definitely looked pretty beat up at that point.
Dealing with the Loss of Control
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Dick Foley:
[laughing] Right. Now during this process--when we're undergoing these intense treatments for cancer, we tend to lose some control over our lives. What does that feel like? And how do you deal with that process of feeling a little bit out of control? Cindy, would you like to start?
Cindy:
Well, it was very difficult to try and understand how I could get some control back. And I think being actively involved in my care gives me some of that control--being actively involved in any preventative measures. There are any watchful measures that I may do, or that my physician may do, helps give me some of that control back, and to help plan for things. So that's kind of how I worked through a lot of those.
Dick Foley:
Mm-hmm. Steve, any comments on the loss of control issue?
Steve:
Well, of course the whole thing is an enormous loss of control, and it causes lots of anger. Sam was talking before about depression. And they're probably all inter-related, but you experience a lot of anger, as well "why did this happen to me?" and so forth. But I think a part of that anger is also this loss of control. You thought you were running your life, and suddenly there's something else that's sort of running it. And I remember a number of little incidents that sort of gave you a little insight into the ways in which you were frustrated. I remember-- irritated at the hospital that the cleaning staff was not very sensitive to patients being undressed--you know, that someone who was going to clean the bathroom would simply walk in and go and start cleaning the bathroom. And the fact that you might be there behind the curtain giving yourself a sponge bath at the time was irrelevant to them. And that was the sort of thing that really made you feel angry. Because you--it's like, I'm here in the hospital. I'm suffering. I shouldn't have to suffer this additional indignity.
Dick Foley:
Exactly. [laughs]
Steve:
You know, if nothing else, I'd like to control who sees me naked. So there's a lot of little things like that that end up bothering you. But, you know, you also sort of control things in other ways. We were talking before about the needs of family members. And one of the strange things that happened to me was that, in the first days after my surgery, I really didn't want anyone to come visit me. My wife was there every day for eight hours or something. I was very glad she was there, although she mostly just sat there. But I told her I really didn't want any visitors, because I knew that if I had visitors I was going to have to make an effort to sort of be a good host--if not cheerful, at least have a conversation with them.
Dick Foley:
Right.
Steve:
I just didn't want to do that. I just felt that that was way beyond what I was capable of doing. I was feeling crabby about it. I didn't want to see anyone. And my wife told my relatives this, and my father still snuck in--he disregarded this, and he snuck in. He felt that he had to see what I looked like, you know, how bad does he look? And my sister didn't sneak in, but she was mad at me afterwards because I wouldn't let her come see me, which at the time seemed ridiculous. I'm the one in the hospital with cancer, and she's mad at me because I wouldn't let her come see me. But I understand that she needed to see me to reassure herself that I was OK at some level. We sort of figured that out eventually.
Dick Foley:
OK.
Steve:
But that's another control thing, where I was trying to exert some control by saying, you know, "I don't want this," or, "I don't want people to come see me."
Dick Foley:
Right. And, of course, Sam, in your case, in your previous dealings with cancer situations, you had had all the control. You were making the decisions as to the patient's course of treatment, choice of drugs or treatment modalities, and now all of that is gone when you're the patient.
Sam:
Well, I made it very clear to my patients--and this was long before I had my cancer--that we were a team, and the way we were going to get that person well, the fastest and the best way, was for the patient and me to be in control if we could, depending on the situation. So patients really appreciated the fact that I said that to them. And because I believed that, then it was easier for me to say, "OK, I'm not the captain of the ship, but I'm still on the ship." And so I did several things as I was going through my treatment, and afterwards that helped me with that. I didn't have a problem giving up the control, but the helplessness and hopelessness at that point was more of a difficult emotion for me. Just feeling like, "God, am I going to make it through this? Am I going to be cured?" And I realize that part of that is a control issue, but that was the part that I was certainly glad to see go away as I got through my treatment and started feeling better. One of the other things that I did was with an oncology social worker. We actually, believe it or not--I did a tape for support purposes for other cancer patients. I did a tape, video tape, through my treatment--
Dick Foley:
Oh, you did?
Sam:
--and talked about all the psychosocial and physical problems that I was going through as I went through it.
Dick Foley:
Sure.
Sam:
And it gave me kind of something to think about, something to do, if you will. Because otherwise I just sort of sat at home and was a couch potato. But that helped me with my control. And then, as I got well, I jumped right back into the Cancer Society, which I have been involved with for 23 years, and didn't mind becoming the poster boy for the American Cancer Society down here in Florida. It was of tremendous value, and I still, to this day, have that role as a cancer survivor.
Dick Foley:
I'm curious about that video tape of yours. Have you made it available widely at all?
Sam:
Well, it was available 10 years ago. It's kind of outdated. They ran it on local TVs, and we had it available through the state. But it was quite a help to me to do it.
Dick Foley:
Yes.
Sam:
And then to know that I am going to help other people even outside my area.
Dick Foley:
If we extrapolate from the "knowledge is power" to knowledge may- -or proactivity in one's treatment may also provide power and some control. Could you advise a patient, Sam, maybe newly diagnosed patients, as to how they go about building that relationship with the doctor, where they become an active and informed patient, and part of this team you mentioned?
Sam:
I certainly think that if the doctor doesn't say that, then the patient needs to say, "Look, I need to be informed. I'm going to worry no matter what, so just get past that. Understand that I really want to be a part of the team, if you will, so that I understand what my role is, what I have to do. And I want to make sure that I understand the side effects of what I'm going to have, and what do I do when I do have the side effect." And if it's just, you know, that I panic--like sometimes you do--you got to be able to say, "Doctor, I just want you to know that I may just need to come see you pretty quick--even that day--if I'm panicked about something, just for reassurance." If you let them know that right up front, one of two things: if they're not responding to you positively, you might want to go somewhere else, and number two, if they say "fine," then you've kind of created and established the team role concept with them right off the bat, and they know that they're going to have to be--maybe put out a little more effort for you.
Dick Foley:
But I would think that relationship would be one that would work pretty darn well both for physician and patient.
Sam:
Absolutely. And I don't think that--I think physicians today understand that patients are so much more informed due to all the different forms of communication, whether it's the 1-800-ACS-2345 patient service centers or the Internet or their local hospital. So much is out there now that didn't used to be there. And that's wonderful. But I think you still have to reach out, and that's sometimes very difficult to get patients to do.
Finding the Support You Need
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Dick Foley:
Yep. We're going to talk about that in the minutes we have left; and that's reaching out and finding support. Steve, let's come back to you and ask: where did you find your support, and how did you use it? How did it help you to get through your experience?
Steve:
As I mentioned previously, probably the most significant thing for me was the support of my wife. As I mentioned, I'm not terribly good at complaining about things. I tend to be stoic, so it was important for me to kind of get comfortable, or as comfortable as I could get, with actually telling her what I was feeling and what I was scared about and so forth. I think also the thing Sam just said about talking with your doctor--even if you don't have questions about treatment or whatever, if you're panicked--and you will be, there's definitely going to be some times when you're scared that something's happening, or you are just panicked for some reason. I think it's never a bad idea to just make an appointment and see the doctor and get some reassurance.
Dick Foley:
Mm-hmm.
Steve:
You should never feel bad and think, oh, gee, I should--I'm sure there's nothing wrong. I'll wait another week or whatever. It's a wonderful feeling going to the doctor and having the doctor say, "No, no everything's fine. That's not a problem. I'm glad you came in, but you don't have to worry."
Dick Foley:
Was it hard, though, at first to ask for that kind of help?
Steve:
Well, maybe it feels strange to say this, but I didn't want to be a burden. I wanted to be a good patient.
Dick Foley:
Right.
Steve:
Of course, a good patient really ought to be one who brings up these issues and gets to see the doctor and gets reassurance. I think I was pretty good at doing it. I think I got better. My doctor had said at one point I'm a worrier. Gee, does that make me bad?
Dick Foley:
Right.
Steve:
But we were talking about ways that you can exercise control. I thought, well OK, one of the parts of this that's my job is that I'm supposed to check my neck and check for lumps and things like that. So I want to be the world's best patient and be really careful about checking that. And if I do get a recurrence, I'm going to catch it early, because I know if you catch it early it's much more likely to be treatable.
Dick Foley:
You bet.
Steve:
So you want to do that well. And it would seem very strange then, that if you did that well and you couldn't turn around and go to the doctor and say, "I'm concerned about this particular thing."
Dick Foley:
Let's talk for a moment, Steve, about your primary source of support--and that's your wife--and her experience as you were going through this. Where did she turn for support? And what did she find, do you think, that helped her the most to get through this?
Steve:
Well, she had a very difficult year because her mother had a recurrence of breast cancer. She's doing fine now, but within just two or three weeks of one another, her mother was diagnosed with this recurrence and I got this diagnosis of tongue cancer, so my wife had a lot to deal with it at that point. She talked to family members. She talked to a therapist to get some of that out. She was doing a lot of Internet research and seeing different doctors and things like that. You know, it's difficult because the person who's the cancer patient is not necessarily going to be very good at supporting the other family member.
Dick Foley:
Right.
Steve:
You're the center of the problem here, and even if you want to be supportive to them, it's sort of hard.
Dick Foley:
Mm-hmm.
Steve:
So they really need to try to get support elsewhere, go see a therapist or talk to other family members, or find a support group--and there are support groups for spouses of people with cancer.
Dick Foley:
Sure. And your wife did some of these things.
Steve:
She did those things, yeah.
Dick Foley:
OK. Cindy, in your case, where was your greatest support, and how were you able to use it?
Cindy:
I think from my family and from my circle of friends. I have some very old and dear nursing friends that I worked with for a lot of years. They were the ones that actually came to my home and sat with me during my recovery. And they were a wonderful support. One thing I wanted to add to something Steve and Sam had said--a great resource of information is through the American Cancer Society Web site. They have great links as far as what type of cancer you have, with a listing of questions that you can actually take to your physician and ask those questions. And it's a very comprehensive list of the things that as a patient you need to know.
Dick Foley:
Was it important for you, Cindy, during your experience, to find others who were going through similar experiences and interact with them and then dialogue with them?
Cindy:
I, to this day, I still look--
Dick Foley:
Do you?
Cindy:
--for those people that have had similar type of experiences. I had a very dear friend of mine was diagnosed with ovarian cancer four months before my diagnosis, and so we did a lot of hanging out together. Glad to say she is cancer-free, too, as of over two years--almost two years--now.
Dick Foley:
That's good news.
Cindy:
So it was different experiences but in a lot of similar ways, to tell you the truth, during her treatment and the feelings that we had. So it was good to share some of our worries, our fears and all, together.
Dick Foley:
And you were able to provide some support for her, I trust.
Cindy:
Yes, I hope. I hope I did. Yes.
Dick Foley:
Good. Now, Sam, how about you? When you were going through this, obviously you have more knowledge than most, because this has been your area of professional expertise for a long time, but now you have the emotional burden because it's you.
Sam:
Right, well, and I had the same support system from my wife, from my children, from my family of physicians and nurses and everybody in our medical center, and--like I mentioned to you--my Cancer Society family. I mean everybody was just absolutely, phenomenally helpful to me. But I would like to mention religion as a very important part of helping you heal. If you--it's not a good time to get religion, because then you don't really know if it's helping you, but if you are a religious person, as I am, I look to God for a lot of help and support. And I found a tremendous amount of comfort in not only my own prayers, but the prayers that other people were saying to me. I mean, people would write me and send me notes and all kinds of things about, you know, that they were praying for me. My church was praying for me. That was very comforting. And that's just something above and beyond that I sort of knew it, but I didn't know it like I know it now.
Dick Foley:
That's been a pretty consistent thread, too, Sam, through a lot of shows that we do, and so it's not surprising that you would emphasize that.
Sam:
Yes. It's very important.
Dick Foley:
I'm going to assume with all three of you that--and Cindy, even you as kind of a "newbie," as you referred to yourself in this whole process--that you've already begun to maybe identify a silver lining in all of this--some way that this may have touched your life in a positive way, helped allow you to grow, allowed you to learn. Can you begin, Cindy, in identifying for us: what was your silver lining?
Cindy:
As Sam said, spiritually, absolutely the amounts of prayers that occurred during that time and continue are phenomenal, and were a wonderful part of support as we went through it. I believe the network of people that I not only continue to meet and talk to, and my network of friends across the country, is my silver lining. They are my support. My family, my husband and my children are my strength, and I have every intention of being here for them.
Dick Foley:
Very nicely said. Steve, how about you?
Steve:
Well, there are some silver linings. I mean--to pick a silly one- -I was remembering when Sam was talking about losing all that weight. I remember that when I was in the hospital, I could eat all of the ice cream I wanted to. I didn't have to worry about it.
[laughter]
Steve:
Didn't have to feel guilty about it. I mean, of course, it changes your perspective on life. I remember that I--when I contemplated the fact that I might die from this--I sort of counted my blessings and said, "Well, you know, I found my true love with my wife. I have a daughter who's nearly grown. I've sort of done what I need to at launching her as my child. I've been successful with my work and my friends and so forth." And, while I don't want to die, I hope to be here a long time, you know, I sort of feel like I've already done something on this earth. And I can sort of accept the fact that everything from here on in is just a blessing. It's extra time, and it really did change my perspective towards dying. As I say, I don't want to die, but I could sort of accept the concept now, where I hadn't really had to face it before.
Dick Foley:
Yep. I think cancer changes almost every patient's perspective. How has yours changed, Sam?
Sam:
Well, certainly the zest for life. I was already on the upper aspects of the Richter scale, but I went even further on that because of the ability to go back to my patients and over the years now, to have spent so much time with the American Cancer Society, educating other people certainly about the harmful effects of smoking--which we haven't really talked about some of the causes--the use of oral tobacco, the uses of smoking. I think it's so important for me to be proactive out there, and that has been a silver lining for me, to think that maybe I have changed the behavior of others, maybe I helped some people prevent themselves from getting cancer. I think that's one of the most powerful things that has touched my life.
Dick Foley:
I'm so glad that you brought that into our discussion. That has been true for me as well in encouraging screening and trying to help others avoid the circumstances in which we have found ourselves, if that's possible.
Sam:
Absolutely.
Dick Foley:
Well, to all three of you, I want to say just a very profound thanks for your willingness to share your stories as openly as you have. And I hope this discussion has helped our audience with some of the issues that may be part of your lives. Thanks again to our guests--to Steve, to Cindy, and to Sam--for their willingness to share their stories, their thoughts and their feelings, and really a part of their lives with us today. I hope that some of their experiences will help you to think about and talk about your own concerns in healing ways. I encourage you to listen to other discussions we have available on the Web site. For the American Cancer Society's Cancer Survivors Network, I'm Dick Foley, wishing each of you a great day, today and every day.
Note: All the content of this interviews has collected from American Cancer Society's Cancer Survivors Network.
Recorded September 20, 2002
Steve:
Oh, glad to be here.
Dick Foley:
Now, let me just recap your story a
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