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JT2 Offline OP
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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


Age 55 at Dx,smoker 30 yrs ago, drinker 8 yrs ago; Stage 4 Squamous cell carcenoma T4a N3; 35 radiation tx, 3 chemo w/ Cisplatin, radical neck dissection,40 hyperbaric dives pre-surgery. Clinical remission since May 2006; Update: declared cancer free July 16, 2010! Miracles can happen...
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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.


Husband: 3 SCC gum and cheek cancers 2002, 2005, 2006: surgery only. Scans clear after removal of small, well differentiated, non-invasive cancers. No radiation. 4th SCC lip diagnosed 4/13/07 - in situ, removed in biopsy. More lip removed 2/8/08 - dysplasia. 2 Biopsies 3/17/09 no cancer (lichenoids)
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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


SCC left mandible TIVN0M0 40% of jaw removed, rebuilt using fibula, titanium and tissue from forearm.June 06. 30 IMRT Aug.-Oct. 06
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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.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
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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.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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JT2 Offline OP
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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 !


Age 55 at Dx,smoker 30 yrs ago, drinker 8 yrs ago; Stage 4 Squamous cell carcenoma T4a N3; 35 radiation tx, 3 chemo w/ Cisplatin, radical neck dissection,40 hyperbaric dives pre-surgery. Clinical remission since May 2006; Update: declared cancer free July 16, 2010! Miracles can happen...
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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


Jerry

Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.

"Whatever doesn't kill me, makes me stronger"
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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


Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
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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


Karen stage 4B (T3N3M0)tonsil cancer diagnosed in 9/2001.Concurrent chemo-radiation treatment ( XRT x 48 /Cisplatin x 4) ended in 12/01. Have been in remission ever since.
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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.


6-05, Left Tonsil-T1N2bM0 stageIVA, chemo(Cisplatin), radiation(6660cGy), neck disection, no PEG. HPV negative. (Doc suspects posit)
3-9-09 last of 30 HBO treatments.
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JT2 - were you seen at the BC Cancer Agency? I am curious since OCF is adding a new science advisory board member this month, the first from outsdie the US, Dr. Miriam Rosen from there. She has been at the forefront of research on tissue flouresence (the loss of whch is an indicator of potentially compromised cells) and has begun to set up a really brilliant idea, a group of dysplasia clinics in BC to follow people with precancers to ensure that they are not lost in the dental or medical world, and they end up in treatments at the earliest moment in time. We are very lucky to have someone of her caliber associated with OCF.

Your observations about people who come from the cancer experience are spot on. I never cease to be amazed at the caring efforts of the people that come back to these boards to help others behind them. Welcome to the family.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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JT, thank you for sharing your experiences with this forum. My husband has T4A N2B. You just give me an abundance of hope. Thank you again for sharing. Carol...


Carol CG to Husband age 60 Stage IV SCC right tonsil T4AN2B tx rad x 35 chemo x 2 Currently after treatment no sign of cancer in throat. (all clear to date)
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Hello JT. It's good to have you here. There really does seem to be a waiting period for oral cancers. It seems like quite a few people spend alot of time waiting for the symptoms to go away. I think it could be a couple of things. One, there are so many other things that could cause soreness in the oral areas, and two, it's more comforting to assume soreness or sores are coming from colds ect.. than to think Cancer. My personal experience was I had sore throat but not virus type sore. It was just aggrivating like it was possibly being caused by allergies. I really didn't pay any attention to it because the allergy problem in my area has been getting worse over the past couple of years.

Last Oct., I raised my neck to shave and noticed that it seemed swollen on the left side. After two months of bloodtests, antibiotics, and a FNA biopsy that came back negative my ENT said he wanted to do a surgical biopsy because the node was not going down. Then we found the cancer. It took almost three months from the time I noticed the swelling but I had the soar throat for awhile. It would come and go though. I don't think that you or anyone else is stupid, we just don't think of having cancer, or maybe just don't want to. I am sure that as cancer becomes more widespread people will start thinking of it alot quicker. Also hopefully Dr.s can get on the same page. It seems the more rural the area the less the dr.s are up to date on the advances in treatment ect. Thanks for coming and offering you experience. That's what life is about, people helping people.


Lee, age 33, stage 4a, T2N2bM0, Tumor left tonsil (removed), 2 left side nodes removed (poorly differientiatied)total of 3 nodes involved. Treatment IMRT x33/ 2x Cysplatin completed. Good Health and Good Help to you.
Lee
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JT2 Offline OP
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Thank you all so very much for your kind words and thoughts. You have made me feel very welcome, a feeling I have not experienced a lot of since being diagnosed 2 years ago. It seems that cancer patients can easily detach themselves from the real world as basic survival becomes paramount in their minds.

Frankly, I never really considered myself a patient of any disease or illness throughout most of this ordeal so far, but then every now and again the truth about my health condition would sneak past all my mental barricades and confront me with stark reality. But that sense would pass after a few moments, and I would recede back into my cave to continue the battle against those mutant cancer cells.

There is an abundance of hope available to those who believe hope is possible, and that they are worthy of same. The biggest source of hope, in my opinion, is one's own mind, and once that power has been identified, harnessed and then ultimately focused, there is no limit to what one can accomplish. I am reminded of the wisedom in the statement "There is only 6 inches that separates you from your objectives - the distance between your ears !"

I set one major goal following the presentation of my treatment plan, and that was to "survive my third chemotherapy session." I had heard that many did not have the strength to attend their third session, not to mention what one is told about possible side effects.

The thought of vomiting has always made me nauseous, and I will do almost anything to avoid it. Cisplatin can cause severe nausea and vomiting, and so I needed to really prepare my mind in advance of scheduled treatment. I developed such a phobia that I needed a well defined goal in order to envision success, and I am happy to report that I sailed through all 3 chemo treatments without so much as a single queesy moment as far as vomiting was concerned.

I cannot explain my body's reaction to the Cisplatin any other way than attribute it to the existance of a powerful mental attitude. I don't know what kind of a show I put on in front of my nurses or fellow patients, but we all had a lot of laughs chasing the vomit gremlin out of our hospital ward !

Brian, I cannot say enough about the Fraser Valley Cancer Centre. For those not familiar with the facility, it has just celebrated its 10th year of operation, and is highly regarded as a first rate cancer treatment and research centre in Canada and throughout the world.

This may sound kind of goofy, but I actually looked forward to my daily radiation visits primarily because it was a hotter than usual summer in the Greater Vancouver region in 2005, and the building itself is such a pleasant place to be on a hot summer afternoon. Of course I'd rather be sailing, but the FVCC has very little in common with any other typical health care facility I am familiar with.

Comfortable, open, architectually refined with lots of natural cedar wood, plants, skylights and creature comforts, and to top it all off, a whole bunch of high performance, cancer-killing equipment well hidden from view. Its a well balanced, purposeful environment in my opinion.

I do not recognize Dr. Rosen's name, but if she is anything like the almost 300 other health professionals who work at the FVCC, then you will have made an excellent choice. How they managed to attract so many like minded individuals into such a sensitive workplace is beyond me.

Anyway, I really look forward to getting to know the members of this forum, as well as becoming familiar with their stories. Perhaps what I am most excited about is the opportunity to share what worked for me with others who are still mounting the fight or seeking an alternate approach to winning the battle.

I have plenty of energy and a burning desire to kick this beast's butt as best I can, whenever and wherever I can. Fortunately you will be glad to know that my "power off" switch is conveniently located and easily accessed, which I need help turning to the "off" position should I wander off the path of reasonableness.

I would like to thank you all again for introducing yourselves to me, and making my visits something to look forward to.

This disease is no match for us humans once we get our collective act together. That's what I truly believe is the essence of our global survival. That, and a generous helping of positive thinking.......

Kindest regards,
JT2


Age 55 at Dx,smoker 30 yrs ago, drinker 8 yrs ago; Stage 4 Squamous cell carcenoma T4a N3; 35 radiation tx, 3 chemo w/ Cisplatin, radical neck dissection,40 hyperbaric dives pre-surgery. Clinical remission since May 2006; Update: declared cancer free July 16, 2010! Miracles can happen...
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JT2,
I can't wait to share your story with my mom. I know, I need to update my sig line...still waiting for her surgery to take place...
My mom is a character also-she hid her issues from herself and others. I am her first born and happen to be a nosey sort who notices everything, sound, color.... She has been beating herself up for about 8 wks now because she smoked 1.5 packs of winston daily for over 40 years. She hates going to the dentist so she 'took care of things' herself. She has a partial plate which she was wearing with a wax tooth holding it in place in the front--she was very proud as she had constructed that tooth herself. She ignores a lot of what her body was telling her--actually, probably screaming at her. She is the most wonderful person I know and tries to see the light side of things....here and now she isn't finding much light, but I know she will again, once we get her back on track. I look forward to sharing your posts, as along with the replies with her, I have been telling her that her mind is her strongest advocate--besides me of course!
Thank you. Donna


Donna
CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
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