My story:

I was lucky to have discovered my tumor at an early stage. I had no pain but tasted pepper in the back of my throat only when I ate potato chips. This happened during summer when we grill outdoors often and have chips a lot. I even asked my wife if she was seasoning the chips. I thought, �Their are no taste buds in the back of your throat, are there???

At one point I went into the washroom and tilted my head back and took a good look at that area of my throat, Soft Palet next to Uvula, I did not see anything. About two weeks later it happened again and I went back and got an LED light I had on a key chain and took another look. With the aid of the brighter light I noticed a red discoloration about the size of a US Quarter. I had no pain and there was no swelling just the red spot.

I had two risk factors working against me at the time. I was a smoker and I work in tropical forestry and had just returned from the Amazon Rainforest.

Of course I spent two days on the Internet looking up every conceivable picture or description of oral cancer, viral infection, tropical disease and you name it. Nothing seemed to quite fit the description of this red spot, and almost everything had some degree of redness and inflammation associated with it. It was time for a visit to the doctor.

I decided to see my General Practitioner (GP) who at 65 had seen almost every conceivable disease walk through his doors. He took a look and then swabbed the area and personally took that swab back for a look under a microscope. After that he told me it did not look like it was a biological infection, he had seen a number of oral cancers and he ruled that out, so the most likely culprit for him was a viral infection.

I was tremendously relived that it was not cancer but still concerned about what it truly was. We discussed next steps and we almost decided to start a course of ant-virals and anti-biotics and then give it a couple of weeks for another look-see. I could tell he was a bit pensive about this course so I just told him �Doc I�d really like to know what this is. Who else can I see?� I think he was relieved to pass this thing along as he was obviously not sure what it was. He said he could send me to an Oral Surgeon or an ENT. He decided to send me to one of the best and most experienced Oral Surgeons on my side of the state, a man who had a great deal of experience and who had dealt with all manner infections and oral cancers (Damn, there was that cancer word again, maybe I had not dodged a bullet). In the parking lot I called my wife, putting the best face on it I started out �Honey, it�s not cancer��

A week later I was in the Oral Surgeons Chair. He had taken the obligatory full face x-ray (up on the little light screen on the wall) and had pulled my mouth open with some plastic tongs while he took some high definition pictures of the now very interesting red spot, which was blown up very much larger than life on a computer screen in front of me, and he was stumped. He had seen and operated on many cancers and this was not cancer (thank god again). He agreed with my GP that it was not biological, so it must be some sort of virus, most likely picked up on my last visit to South America, but again the pensive look. He decided to send the pictures by email to another doctor, an infectious disease specialist, and asked if I minded waiting while they discussed this on the phone. I said of course not. So there I sat for 45 min. in his lonely examining room looking at a blown up picture of the red spot on a computer screen and waited for the verdict (cue Jeopardy music).

He returned but did not enter the room. He was in the hall just his side of the examining room door and said they had decided that this was probably a viral infection, but his chin was in his hand, he was looking at the floor and he was not very convincing. He said he was going to put me on some anti-virals, turned took one step and stopped and started shaking his head from side to side. I said �Doc I�d really like to know what this is, who else can I see?� He said there was an ENT about an hours drive from my house, one of the best in the state, very hard to get an appointment with, would I wait while he tried to get me in to see him? I said sure (restart Jeopardy music). He returned about 20 min. later and said he had secured an appointment 10 days hence. I was still worried about the infection, and what it could mean, but at least it was not cancer. In the parking lot I called my wife � Honey, this doctor agrees, it�s not cancer��

Ten days later I�m 11 stories up in a swanky office building attached to one of the best medical facilities in the state. I�m in another examining room and the very professional ENT is finishing up his examination of my red spot. I�m in the big chair and he�s on one of those rolling stools. He rolls back away from me but not far. Our faces are less then two feet apart and his face is an open book. I say, �you�ve seen this before� he knows I know, he says �its cancer�. Apparently I�ve caught him in an unguarded moment. He back-peddles both verbally and physically. As he rolls away he lets me know that he wants to take a biopsy, that a biopsy is the only way to know for sure that its cancer but I know he knows. He continues the conversation with a number of �if the biopsy confirms its cancer (72 hours later it does)�� but we both know that we are now talking about my cancer.

I ask him why he thinks the other two doctors missed this and he says he has only seen a case like mine, at this stage, in someone my age, once in his career. It is an early stage cancer in a fairly unique location, it is very hard to diagnose if you have not seen it at this stage before. He tells me he is glad I stayed on this. He is intrigued by the potato chip story and tells me most people dismiss these little signs until much later stages of cancer when the physical signs are all to apparent. He is very confident that this is curable, but we have much to do, everything is contingent on the biopsy of course but we�ll need CT scans and this and that�. I start to go mentally numb. Somewhere in my head I record the rest of what he says, I�ll process it later

In the parking lot it�s a hot sticky August day but my blood is running cold. I�m an hours drive from home and she�s waiting by the phone�I have a call to make��


Post Script: The time interval between when I discovered the funny pepper taste in my throat and the biopsy proving I had cancer, was about two and half months.

I was diagnosed with stage 1 minimally invasive SCC of the soft palet. I received 7 weeks of radiation treatment with no surgery or chemotherapy. My doctors are fairly confident that we caught this early enough to give me a high degree of comfort that I will lead a long and productive life

It is good that you noticed it when you did and got curious. Congrats and I hope you don't have many problems with the after effects of the rads and chemo. From the time I knew i had cancer of some type until a Dr finally listened and checked me was about 8 to 9 moths and I was insistant. Good thing I was having a scope and that Dr listened. He was wy surgeon for a nissen fundiplication on my Esophagus and my 1st aortic abdominal aneurysm surgery.

Jim,

I'm glad they caught your abdominal aortic aneurysm.. My Dad had a stomach pain at work. 5 hours later he died in the CT machine. They had no idea what was wrong. They complettly missed the aortic aneurysm.

Mine was found accidently while my my esophagus was being scanned. I have a reoccuance of it that is only half repaired. Waiting for round 2 one day soon.

Kelly, You have a way with words! I never read anything that long...but the way you write, I wish I was still reading! Of all the foods I can no longer eat, potatoe chips are what I miss the most! Also, you may not know this..but during the whole 9/11 tragedy, the stores sold out of potatoe chips! They are a big comfort food, in your case...a lifesaving food! Well best of luck that you can again enjoy chips & everything else you desire for many, many years to come. (truth be told, I could eat chips-covered with tons of dip...but the weight loss was the only good thing to come out of getting cancer) I enjoy the size 6 jeans more than the chips !!!

Kelly, thank you so much for sharing your experience in such detail.
Had a long day today meeting with the radiologist(finally on our way to action).
And somehow reading about what you went through was very helpful to me. I can't even tell you exactly why but it really touched me.
I'm so glad you advocated for yourself and kept pushing.

Kelly,
Very interesting case.
I thought a T3 primary of the Oropharnyx is usually considered stage 3 (locally advanced). http://oralcancerfoundation.org/facts/pdf/TNM%20staging.pdf

Did they just treat your Oropharnyx tumor, or did they include any un-involved but suspect lymph node regions?

Earlier you mentioned your CCC had new Varian IGRT systems. Do you know if these were the new Varian RapidArc IG-IMRT systems?.

I think that the take away from your post is that being your own advocate, not trusting any one person to tell you what's what, and that exploring until you have finite answers to things that are not horrible - but just not right in someway, is paramount. Like others have commented, I thought I was extremely well told, and am surprised that you have gotten to almost 200 posts without having told this story before.... because it is an invaluable lesson in dealing with our medical system today. A system made up of many kinds of doctors, of many levels of experience and competency, and many different feelings about the process of referral. (Which many are not so warm to except to cover their asses.)

Since you are apparently an under-appreciated and previously undiscovered wordsmith of some skill here, I would like to ask you a favor. That would be to add a paragraph to this story that speaks to the lessons learned about the medical system, the need to be your own advocate to get answers, to not ignore things which seem minor, until they become a significant problem that cannot be ignored, and lastly to have an awareness if you have or have not actively engaged in risk factors for diseases, specifically cancer, in your life and appreciate that those choices put you at risk and therefore you must be more diligent about watching for changes in yourself biologically.

Should you care to do that, I will copy a version of that finished piece onto the "read this first if you are new here" part of the boards as a permanent must read post.

Dianne,

Thanks for the kind words regarding my writing. The funny thing is, I cannot eat chips yet (they are too dry), hopefully by summer for grill season.

Susan,

I could not write this without specifically thinking of you and the way you got the news from your doctor. Although my ENT is a really great guy, if not a bit dry, he said �its cancer� in such a stone cold manner that any subsequent talk of biopsy was superfluous.

Don,

I actually had to go back and change my signature line. I had it at stage three also until my case went through the staging board at the cancer center. Most of the cancer was very thinly distributed and only a few cells deep, like oil on water. It was a smaller part near the pillar on the side near the tonsil that was minimally invasive. Just goes to show you that each case is truly unique.

I had no suspect lymph node involvement but they hit them just as hard with radiation. I�ll never grow a beard again but can manage a nice goatee.

I think the center I went to had the Varian rapid arc, that sounds familiar although I�m not sure.

Brian,

I would be glad to add the notes you suggested. I�ll get to that this weekend and repost.

Kelly, I'm so glad you are going to add to this so it can be there to help folks understand the importance of advocating for themselves.
Many of us might just take that for granted. But over the years I have worked with so many people who don't believe they can (or should) question "authority figures."
And frankly, some of those authority figures don't invite those kinds of questions.
Your story is an excellent example of persisting in a polite, firm manner with very important results. And you write so well.