Lisa's Story
Lisa Krause In April of 2000, I got what I thought was a
very bad cold. I was down and out for over a week. That was really the first time I noticed any pain in my tongue. Shortly
afterwards, I developed sores in my throat, and by the beginning of May, I was convinced I had a strep infection or something like that. I went to my local walk in clinic, (the "doc in a box") and was given some cough medicine and told to go home and rest. In retrospect, I've thought about this doctor,
a general practitioner MD, and what he didn't recognize.
While I myself had not actually been able to see anything at the site of the pain on my tongue, I did have these white sores all over in my mouth…surely that should have aroused his attention and suspicions.
My tongue continued to hurt, and one day in late May while I was driving my car, I remember looking in the mirror and moving it to the side, trying to see what was so sore. To my horror, there was this awful looking white thing, big enough for me to see from some distance away in the rear view mirror. (Now with my cancer experience behind me, I realize how seldom I, and probably others, really take the time to look in our mouths.) Since it hadn't gone away, I went back to the same Walk In Clinic, this time seeing a different doctor, and told him that I had been feeling generally lousy and then showed him this "thing" on my tongue. He said it was nothing, gave me some antibiotics, and I was on my way again, convinced that I was crazy and it would go away. After all, I had been examined by two MD's who had now looked in my mouth…
I was so convinced in fact, that I thought the sore actually was smaller and probably going away as I finished the antibiotics in mid June on our vacation. Of course it wasn't any smaller. In fact it hadn't changed at all. I will take some of the responsibility here, you know how life is… it just has a way of making you a busy person, and how it is human nature to deny that things could be wrong with you. I was interviewing for a new job, had a two year old, was only 30 years old, didn't smoke etc and I just continued to ignore the fact that my tongue still hurt. I thought about going again to the doctor, but the combination of everything going on in my life, and the feeling that the doctors must know what's what, kept me from doing anything.
I was offered a new job in July, now 4 months after my tongue began to hurt. Since I was told it would not have the dental benefits I currently had, I decided to find a dentist and get myself in for one good checkup before losing that benefit. That was July 13. I was not going because of the pain/thing on my tongue - I went just for a checkup. It's amazing to me now that I didn't take that soreness seriously.
After meeting Dr. L and giving him a long introduction about this "heinous thing" on my tongue, and actually apologizing to him if it grossed him out - I opened my mouth and he took a look. For about 30 seconds. Then he called his colleague Dr. M, an oral surgeon and got me an appointment for the very next day. It is clear to me now, that he had a pretty good idea what he was looking at, and did something very important. He got a second opinion from another doctor, immediately. I owe this dentist a great deal, since I now know that the earlier the detection of the disease, the better the prognosis for a positive outcome.
I went to see Dr. M the oral surgeon, still oblivious to the idea that there could be something seriously wrong with me. He did a biopsy - though he didn't call it that, he just said he'd "take a piece of it". I asked if I could go to work and he said I'd need some pain pills and should stay home. I remember walking out of the building. I just started to cry - it was so weird because really, it didn't cross my mind that there was anything wrong, but somehow inside, I just knew. That was a Friday. Over the weekend, whenever I would tell the story of him taking a piece of it, and saying we'd just take it out if it was anything, I would say, "That little piece hurt, and I'll tell you what, if they want to take it out, they're putting me to sleep the next time!" How very fortuitous - they sure did.
On Monday afternoon, I was paged out from a meeting for a phone call. It was Dr. M, telling me it was cancer. He said that they were going to take care of me, and that I had to leave work immediately and go to an appointment he had scheduled for me that afternoon. It was the longest drive home in my life. That night I had a CT scan, and by the end of that week I was told it didn't appear that there were any masses in my lungs etc. The following Monday I was in Ann Arbor at the University of Michigan for a consultation, and my surgery was scheduled for August 8th. In between, I went to work, tried to concentrate and read as much as I could. There is so little information out there about this, especially when it happens to someone who doesn't fit the usual risk profile.
I had an 11 hour surgery to remove the left half of my tongue and many of the local lymph nodes. Dr. B (another hero of mine!) and Dr. C my surgeons reconstructed my tongue from a free flap taken from my arm, and at the same time did a skin graft from my leg to cover the donor area from my arm. I had a trach (which was the worst part - so scary) and a feeding tube was put in. I was in the hospital for 7 days - but left the hospital free of both the feeding tube and the trach tube.
My nodes all came back from the laboratory negative, and they did not recommend radiation. At the time, I almost wanted it because I felt like it would be insurance, but I also had no idea what it does to you to be radiated in that part of the body. I found out later from reading some support group message boards etc. and have been more thankful that I didn't have to go through radiation treatments - although now I'm more frightened if I ever need it.
I had some speech therapy and physical therapy for some minor should pain. I returned to work in 8 weeks. I know how lucky I am to be able to say that my life has almost gone back to "normal". I can eat, drink, and swallow without any problems. My speech is quite clear - though I have some slurring. Sometimes when I get excited and start to talk fast, I can see that people aren't exactly getting what I'm saying. I communicate with people all the time, and I'm certain that until they see the scars etc. they wouldn't think there was something "wrong" with me or my speech. The scars don't bother me. As one lady who waited on me in a store put it - "It looks like you have had to fight for your life"... and I'm proud of that.
Anyway, I've continued to go to U of M every 6 - 8 weeks for checkups. I've had a few biopsies and one small surgery to remove leukoplakia from the other side of my tongue since my original episode with all this. Everything has come back OK so far. In August, it will be two years from my surgery, and my doctor says statistical prognoses get better after that period of time, so I'm hoping to get positive results at my next few checks.
Another thing I'm currently pondering is whether or not to have another child - assuming I stay cancer free through August. My doctor says she gives the green light at two years, but she also mentioned that there are some medical researchers who theorize that there is a link similar to that with breast cancer between the raging hormones of pregnancy and recurrence (or rapid growth) of cancer. I can't find anything on the Internet about this, and in my mind the jury is still out. I have a four-year-old son, and actually we were trying to get pregnant in that summer when I got cancer instead. If I think it will make the cancer come back, of course I wouldn't do it.
Well, OCF asked for my story, and I've told it. I hope you're not sleeping by now. I really appreciate OCF's web site, and would love to help in any way I can. I consider myself to be an intelligent and aware person. But my story illustrates the lack of awareness of oral cancer that exists. It has nothing to do with being smart, it has to do with even knowing that this disease exists, and can occur in someone who has none of the major risk factors for the disease. When you consider that I neglected acting on this out of ignorance, I think that I am a perfect example of what building awareness could do. I thought I knew about all of the cancer screenings possible - and yet even when presented with this monstrous, ugly, painful thing on my tongue, I didn't even worry about it. I didn't even KNOW there was such a thing as tongue cancer. Trust me when I tell you that because of what happened to me, I tell everyone I can about it and what to look for. Early detection saves lives, and I know that I am one of the lucky ones.
Lisa Bourdon-Krause, almost 7 years of survivorship!