Hello Forum:

I am new to this forum, and glad to have discovered it. Actually my Dentist discovered it, and referred me both to obtain information and to possibly provide assistance to others who, like myself, suffer with oral cancer or its side effects.

I have not read any posts as yet, and thus am not familiar with its style or format. I presume this forum is used to detail the specifics of your illness or involvement in the website, and so I shall provide a brief overview of my situation.

The first thing I would like to say is that mine is a very unique situation. I doubt there are many who were or are as stupid as I with respect to the early diagnosis of cancer. I remember awaking one morning with a sore throat and neck which I attributed to poor sleeping posture. The minor pain persisted over a period of weeks, however it was inconsistent as to occurance and severity. I paid little or no attention to it. Some time later the soreness had moved around to the side of my throat, however it was not severe enough for me to consider seriously. Still later it seemed that my throat was sensitive to the touch and it appeared to be inflamed, and quite frankly, the whole matter had become somewhat annoying. I failed to seek medical advice and put it out of my mind. For almost a year I refused to deal with the discomfort that had now produced a large lumpish growth on the right side of my neck.

Fearing comments from my wife, and rather than investigating this obvious health problem, I decided to grow a full beard for the first time in my life. I was, at the time, 54 years old and had enjoyed excellent health for every one of those years.

The lump continued to grow and before long, it seemed to have cloned itself on the left side of my neck. It wasn't as easy putting the matter out of my mind anymore, and I became increasingly aware of the lumps and my diligent effort to keep them well hidden.

Then I developed the symptoms of a common cold with its raw and raspy throat, which lasted a great deal longer than the other colds I infrequently caught. In addition, my tongue felt irritated as if it had been rubbing against a sharp piece of tooth. Finally, I mentioned the symptoms to my wife who suggested I visit the doctor for a checkup seeing as it had been over 10 years since my last review.

I committed to so doing, however a week or so later the soreness had abated and I felt it was no longer necessary to check it out. That was an unpopular notion, and to keep the peace around home (and to honor my committment...) I agreed to visit the doctor in order to at least obtain a prescription to rid myself of this pesty sore throat.

I hadn't seen Sean for over 10 years, and after the typical exchange of pleasantries, I outlined the problem, and with tongue depressor in hand, he asked me to open and say "Aaagh."

I wan't ready for his reaction to what he observed. His face went chalk white, and with eyeballs bulging out of their sockets, he exclaimed "John, you have cancer. There's a hole in the back of your throat that I could put my thumb through...." Quote, unquote.

He was shocked, and quickly apologized for his verbal outburst which he was quite upset about. But cancer, what me ? You must be kidding.

But kidding he was not, and cancer I did have. All stage 4 of it in fact, with a primary site of the left tonsil that had metastisized onto my tongue, floor of the mouth, soft palate, lateral pharynx, internal medial mandible and lymph nodes on both sides of my neck. The largest of the lumps was 7 centimeters or almost 3 inches in length.

A biopsy, CT Scan and further examinations by oncology specialists soon confirmed the diagnosis, and things took a rather bleak turn for the worse from there.

Why was I stupid ? Well, if it isn't already painfully clear, I could have avoided most of the suffering through early detection and a more responsible attitude towards my personal health. In other words, I could have easily been treated a year or so earlier and enjoyed a more hopeful 80%- 90% survival prognostication than what I faced then. Most of my health problem was avoidable, and I had failed to take appropraite action when it was first noticed by me.

In confessing my own stupidity a number of times, I have learned that I was not alone. I do not fully understand why so many men turn a blind eye to their health concerns rather than seeking medical attention, but the fact that so many fall into this category suggests it is more than a passing fancy.

But nothing will wake you up quite the same as a cancer sighting in your body. And wake up I did, although in many respects, it being the 11th hour, it might have been a little late.

That was 2 years ago, almost to the day, and I am happy to report that I am rapidly approaching the first anniversary of clinical remission, which occurs May 31, 2007. All tests during that year have been negative, and despite their many efforts, the doctors and their machines have not been able to find any evidence of cancer in my body.

It was a most difficult year that followed an even more difficult year, but here I am, firm in the belief that I was one of the extremely lucky ones to have dodged the bullet with such a dim hope of survival at the time of diagnosis.

Health related issues compeletely took charge of my life, and only recently have the number of appointments and examinations reduced to the point where I can now expand my thinking and refresh my interests.

I also believe that I have experienced pretty well all there is to experience in the successful battle with this horrible disease, and hope that I can share my experience, knowledge and positive attitude with others who find themselves within cancer's grip, either as a patient or a patient's loved one.

That concludes this introductory session that I hope isn't out of step with this forum's guidelines or expectations. If it is, then I offer a sincere apology to anyone I have offended, but otherwise I look forward to a meaningful exchange of information and inspiration amongst members and guests of the Oral Cancer Foundation's website.

I thank you for your patience and understanding.

Sincerely,
JT

Welcome JT! Your story was most appreciated and there was nothing offensive about it, in fact, your tale of why NOT to ignore any lesions, lumps, or sore throats for more than 2 weeks is a valuable lesson for any newcomers. Keep contributing! JaneP.

JT
I'm really glad you decided to join us here. Your story is not all that uncommon; many of us had the same denial that you describe.

I'm really pleased to hear the remission part...that's ALWAYS the news we like to hear most of all.

Keep coming by, I know you'll be a huge asset to everyone. It's a cruel beast, and we all need each other to get though it
Wayne

JT,
if if makes you feel any better, or wondering if you are in the right place, there are a lot of "stupid" people here who had late or incorrect diagnosis for one reason or another. I for one, had been to a GP twice, had bloodwork done, seen an oral surgeon and asked ny dentist and hygenist on 2 separate occasions what was this tan rubbery blob crowding my uvula in the back of my throat. The GP finally told me see an ENT. In the meanwhile I had researched my "condition" on the internet, found a picture that looked just like it and was convinced that I had peritonsillar abcess. I delayed the ENT appointment because of my fears of having needles stuck in my throat and having the thing drained. I probably advanced my staging, like you, during that time period. It wasn't so much denial, for as, much as not seeing the right specialists in the right place, like a comprehensive cancer center.

Don't be too hard on yourself, what is done, is done. Although I was advanced stage, I survive to this day closing in on 5 years cancer free.

For those of you new here, don't give up hope that they can't find a successful resolution to this.

Welcome to the forum, it's good to have you here.

JT,

Many of us were stupid, me for one, but I must say you might be the winner of that category if we had one. It sounds as though you came out really good considering so here's to your continued good scans.

Being new it's helpful to you as well as others if you add something about your Dx & TX along with your Signature Line and if you want to, here's how:

Editing Signature Line:

It helps the responder to your Post if you include facts about your Diagnosis and Treatment, etc under your Signature. See mine below as an example.

To add to your signature go to the top of the screen and click on MY PROFILE. Then click on EDIT PROFILE and scroll down to the Signature Block and type away. Once you add it, It appears every post you make and your questions and even responses are more understandable.

Look forward to your experience contributions.

Wow ! I am genuinely blown away by the comments and warmth extended me by those who replied to my first post.

On the other hand, such a response is no surprise to me, and is not only typical of the people who are brought together by this truly horrid disease, but almost predictable as well.

Thank you all so very much. If ever one could imagine a positive side effect of cancer, it is the truly awesome people you meet along the way. Prior to being diagnosed with cancer, I was a crew member and Training Officer of one of the busier Coast Guard Auxiliary Units operating on the west coast of British Columbia, Canada, and I used to think participating in safe boating education and life saving activity brought me together with the warmer side of humanity.

By comparison, responding to maritime distress situations only served to prepare me to meet the warmer side of humanity that began when I first entered the Fraser Valley Cancer Centre located in Surrey, BC, a city-suburb of Greater Vancouver.

It didn't matter whether I was in the company of the head oncologist at the Centre (who just happened to be my radiation oncologist too !), or one of the many radiation technicians, chemotherapy nurses, surgical assistants, or the part-time greeter-receptionist, each and every person was warm, caring, considerate and sensitive of myself as a person as well as my condition.

And it continues in this forum. I don't know if the forum is ready for my style of communication, but I have been encouraged by many to share not only my personal experience with others who suffer the same health condition as I, but the particulars of the approach I took in my battle against this beast. Other than the occasional brief mention of same here and there on the internet, I had not found an appropriate venue to discuss what I consider to be the right mind-set necessary to succeed in this effort, or at the very least, what worked for me in wrestling the disease to a state of remission which I believe others could employ to a similar result.

The way I look at it, every patient and every patient's situation is unique to that individual, and while there are many similarities amongst us all, there are just as many differences, and who knows for absolute sure what combination worked and what combination did not ?

All I know for sure is once on this path, there is no getting off, and one has no option but to continue the fight by gathering as many arrows for his or her quivver for future use as possible. You can never be over-prepared for combat with cancer.

I cannot imagine any cancer patient, survivor, caregiver, loved-one, or health professional ruling out a suggestion that had a positive impact on somebody else's personal struggle to survive.

We all have strengths and weaknesses, and the battle against cancer surely brings out the best and worst of both. I recall often a statement I later modified to reflect my personal philosophy of life: My greatest strength is my willingness to accept my greatest weakness, for then I am able to focus my energies on the positive improvement of both myself as well as others.

Perhaps as I become more familiar with this website and its member forums, I may have found an audience who might derive benefit from what I am able to share with anyone so inclined to consider.

However, I don't wish to get ahead of myself, as the purpose of this post was primarily to express my thanks for the joyous welcome afforded me. I shall retain that welcome in memory in order to hopefully pass it on to others I encounter wherever this path may take me.

Sincerely,
JT2

PS: As suggested, I updated my signature to reflect a summary of my particulars for ease of reference by the reader. Thanks, I appreciated the tip !

Welcome JT,

Your story sure is one that will help give hope to others that have been diagnosed with Stage IV Oral Cancer. Congratulations on getting to where you are today.

I have a feeling that if I were not a dentist, I too might have waited much longer to seek a diagnosis. I feel fortunate in that knowing what I did, helped me to need minimum treatment for my Stage I lesion.

Feel free to add to your story as the details of your treatment can help others make decisions about their treatment.

Jerry

Your recovery from what must have been a devastating diagnosis truly will give others here hope for the future.Its a pleasure to meet you.

Liz in the UK

JT, Your very detailed and vivid description about how you discovered your cancer brings back my memory to where I was over 5 years ago and as you catagorised, I am one of the stupid people who had a delayed diagnosis for almost a year due to ignorance. Glad to know that everything is under control now and you are in remission after treatment. Your story can certainly give hope to many late stage cancer patients and their caregivers. Keep posting to let us hear more about your experience. Well done,

Karen

JT2,
You will be a great asset to all of us, and to those that will follow. You may also be just the person that Liz from the UK could seek some advice from. Liz...JT2...I'm throwing you both under the bus...!

JT2, this forum seems to be the place for us to all spill our guts to. The honest truth, is what frees our minds and bodies up, to handle this kind of battle. I thank you all for the transparency that is shared. Thank you Gary and Brian, for a vision that led us all and keeps us all here.

Liz, I don't have the answers that will help you. It just feels like we need to put our collective heads together to help you find the strength for the right outcome.
Rob J.