Frank C's Story: nasal pharyngeal cancer

Listen With Time of audio unavailable

Frank: twenty-seven year survivor

My name is Frank, I'm from Honolulu, Hawaii, and I've been a cancer survivor for the last 27 years. In January of 1973, I was diagnosed with nasal pharyngeal carcinoma, that's cancer of the nasal pharynx, which is where your nose and throat connect. Actually my story begins quite a bit before that. When I was in college, I worked my way through college, and one of the things that I did as a part time job, was I worked for the American Cancer Society as a photographer. That is, every now and then, the cancer society would give me a call and I would go to some meeting or some event and take pictures and get paid for whatever my expenses were, and that was it. But in the course of those couple of years when I was in college back in the early sixties, I got a chance to meet some really wonderful people at ACS and learned the mantra of the different warning signals. Well, I graduated from college and then I went to graduate school , I got my master's in social work in 1968, and then I went on to further graduate work. I went to Union Theological Seminary in New York City and got my master's in divinity. After that I returned to Honolulu and served a local church, the Community Church of Honolulu, for about five years, from '71 to '77. During that period, cancer was not even on my radar screen. I had very little interest in it and really hadn't paid much attention to it.

The early signs

But one day, for some reason or other, noticed that there was a lump on the side of my neck. And I watched it for awhile, and then it disappeared and then it came back, and then I remembered that one of the seven warning signals was if you had a strange or unusual lump. Well, this lump was located on the right side of my jaw, just below my back molars, right up against where my neck and where my jaw started. Didn't pay too much attention to it, but when it didn't go away, I finally decided, well, I'd better get a doctor to check it. So, I happened to go into the hospital for a hernia operation, of all things, and I said, well, while you've got me, why don't you dig around the side of my neck and see what that is. Well they did. This was in August, and fooled around with it, and they said, "Well, we don't see anything there that looks unusual. What we'll do is we'll sew you back up and then keep an eye on it and it disappeared, and then it came back again, and so in January of 1973 they did a full-on biopsy of it, and sure enough, it came back as malignant.

Now, back then, I was not aware enough to ask them what stage it was or anything like that, except to know that the primary was not in the side of my jaw, it was, in fact, in my nasal pharynx. So I was told that I had carcinoma of the nasal pharynx. Being completely uninformed about any medical terms, I had not idea what it was. Other than cancer of the nasal pharynx. They did surgery on me, they removed the tumor, well, obviously had metastasized, they removed the tumor from the side of my neck and said that the primary being in my nose and throat, I would have to have further treatment, which in this case involved radiation therapy. I had an opportunity to go to one of our major medical centers in the country, it was in Texas, went there, essentially for a second opinion, and they told me indeed what I had was what everybody expected, which was carcinoma of the nasal pharynx. The big decision for me and my wife at the time was to decide whether I would be treated in Texas or come back to Honolulu. Well, after a number of phone calls and consultations with different people, I was assured that all the equipment and the physicians and the good training that was required was available in Honolulu as well as in Texas. So I made the decision to really come back to Honolulu to be treated, and was treated with radiation therapy for about a six week period.

Through good times and bad

One of the really interesting and perhaps one of the most important things that happened to me during that time of treatment was while serving a local church, I, my congregation was allowed to see me go through the therapy. And over the six week period I think I probably lost ten or fifteen pounds, most of my hair, and all kinds of other strange things happened to me. And as they saw me change physically, they lent more and more support to me, and really I believe, went through the whole experience with me, and found out what it is to be taken care of by people who really love and care for you. I recall when I was in the hospital initially, over 3 or 4 day period, nearly half of my congregation came to visit me. I think at one time I counted there was a total of about 135 came by to see me within a matter of three or four days. So, it went to show me anyway, that when one shares one's difficulties, people really come and stand by your side and share that difficulty with you.

Needless to say, the treatments were very successful. Some of the long-term effects that I, welular sites, but also for particular population groups. One of the things I've found particularly that I enjoy a lot is working with cancer patients, newly diagnosed and those that are going through some of the different challenges that one goes through as a cancer survivor. In most situations I tend to be one of those that are in the 20+ group of survivors. And whether I choose to or not, I really am sort of a role model for many folks who think it's the end of the world as soon as they are diagnosed with cancer. But indeed there are opportunities and there are a lot of us that have lived for a very long time.

Sharing the stories

Some of the things I think gave me a lot of support as I over the last 20-some-odd years, have been people who have just simply said that they wanted to be supportive, that they didn't necessarily know how to do that, other than to tell me that they were thinking of me, and that really, in many ways, gave me more encouragement than anything else. The other thing that has often been helpful to me is getting together with other survivors, where we can share our own perceptions on how things are going, share stories about what things have happened. There's a guy on the other side of the state that gives me a call every couple years and we compare war stories, because we had the same diagnosis of cancer of the nasal pharynx, and so we share a lot of stories together about how we're doing. Right now I think as far as the cancer's concerned, there's never been any recurrence. It's been 27 very wonderful, good years. My family has been very supportive. I don't have any children but I have a wife and a couple of pets and sisters and nephews and nieces. My mother's now I forget something like 84. My father passed away a couple years ago, but they've always been very supportive.

The other couple of things that have been really interesting is serving at the national level, getting to know people from around the country who have been involved with cancer survivors and work in the area in general. And then of course with the American Cancer Society, just simply being able to share stories with others and sharing one's experiences with others. The cancer experience has taken me into many new areas that I would never have anticipated. Working in a community health center was not directly related to my cancer experience, but it certainly opened up a whole new world for me, and so getting involved in health care has been something that is very exciting to me. The whole are of end of life issues has been one that is very close to me, that I have worked with. At one time I did a lot of volunteer work in our hospitals here, worked as a chaplain there and have been on some interdisciplinary teams. I had many opportunities to lecture at the School of Nursing, School of Social Work, and the School of Public Health, and also the School of Medicine here at the University of Hawaii, and Hawaii Pacific University. And so the cancer experience has just led me to things that I had never anticipated and probably would never have had the opportunity to take part in.

What's happening now? Well, life is as good as it ever has been. I'm now the ripe old age of 56, no I will be 56, and I look forward to many other good years. Final thoughts that I have is that if you're a cancer patient, let me tell you, life could not be more challenging, new worlds open up to you, and indeed new people come into your lives that you never would have the opportunity to meet otherwise. Cancer is what I call extraordinary experience, because it's as theological as it is existential. It challenges you to find your own time and place in the world, and it challenges you to make peace with your understanding of who God is, and it opens all kinds of new opportunities for you, and as I say, when the door closes, other windows open. So for those of you who are cancer survivors, I wish you luck, and for those of you who are just simply interested in what we cancer survivors go through, I invite you into a whole new world of exciting opportunities. Thank you for letting me talk to you.