Well this was a SURPRISE....Squamous cell carcinoma ON THE IMPLANT GRAFT from my arm....almost 19 years later having no previous concerns....so what are the options? So much has changed! I previously had surgery only (radical neck dissection and arm graft)Now its like a sales game....radiation? surgery? Both....nothing? Any and all comments and thoughts appreciated.This was found on a yearly check up that the original surgeon from 1996 had been a supporter of...I had NO IDEA anything was wrong! By the way ...this forum was a savior for me back then and I hope not much has changed in the wonderful folks who supported us before!
Welcome to OCF.
Can you clarify what is going on? It seem very unusual from the way I read it. You had oral cancer 19 years ago and they grafted some arm bone to your jaw, I assume? And 19 years later you have SCC in the grafted bone in your mouth?
First, thank god it has been found and diagnosed. What have your doctors told you about treatment options? With this much time passing, it is not likely called recurrence. If it diagnosed as a new cancer, are treatment options different since the cancer is in a grafted bone?
Tell us more as there are many who can learn something from you on this. You'll find super support from the many who have been on the same trip.
Don
Don...thanks for the note...I think you have brought me an Omen of good luck! My Dad (alive and well!) Is "Don" as well! Yes....I had a radical neck dissection and jaw swing in 1996...the "implant" / Graft was taken from my upper left arm.....about an 8-10 incision...implanted in my mouth/tongue...long recovery but well worth it...no problems eating/talking...nothing....my oncologist/surgeon a truly great guy has a foundation my wife and I support so we kept going year after year for my check ups....just over a year ago...some inflammation appeared/biopsied.....(at his suggestion)..all good...then just a month or so ago...same deal...biopsied and and its squamous cell again....but NOT anywhere in my actual mouth or tongue....all on the implant??? That,s the deal so far...next visit is with a radiologist or 2 and my surgeon....one week from now....details to follow...we are still in a daze! I REALLY don't want any radiation....but at 60 almost years of age how long will a recovery take? Thanks again for your note....by the way...snowing and minus 15 here in Ontario! We should be south...next year for sure!
Welcome to OCF! Im so sorry to read about your situation. What a horrible shock to be diagnosed again after 19 years.
Your options likely will be what you mentioned surgery and radiation. As with everything, everyone is different and will react in their own way, same goes for recovery. Ive seen many go thru it and Ive noticed only about 10%, maybe at most 20% be lucky enough to sail right thru rads and recovery. More patients end up struggling due to not being about to take in enough during the middle to end of rads. Adequate intake is one of the major components to getting thru it easier. There are so many variables that its not anything we could predict. I hope if you do rads that you get lucky and sail right thru. A complete recovery can take up to 2 full years, most patients feel pretty decent by 3-6 months post rads so it really is doable for most.
No matter what your treatment plan, we will help you get thru it.
Best wishes!
Even typical BOT SCC diagnosis have a wide range of treatment plans. Some surgery only, concurrent radiation and chemo, some induction chemo then concurrent rads and chemo, some rads then chemo later. Given the extra uniqueness (if there is such a thing) I think it is even harder to make even a guess what the recommended treatment plan will be. Does getting cancer in an implanted bone mean anything? Ask the oncologists if any studies were able to link anything together. Nothing here has been mentioned as far as I remember. Maybe the old timers can remember.
The great thing is you are on top of it and moving the process forward with professionals you trust. These are incredibly beneficial for you to get this taken care of in the best possible manner.
I'm sixty this year and my treatment was very tough but I survived and am in awe of the way I have sidestepped long term side effects thus far. I have tightness in the neck muscles which cramp up pretty regularly and my head sweats when I eat hot spicy now but I thank God that he let me get by virtually unscathed thus far.
Others on my bus have suffered greater side effects so it really depends on your unique set of factors and conditions and health that influence what happens on the other side and how similar or different the "new normal" is.
Don
Hi folks and thx for all the comments....my teeth are really good.....actually really good for 59 years....should I just start having them pulled prior to rads? My dentist seems to think prior to treatment options I should go and have them pulled? I really don't understand after she has taken years (and $$$) to keep them perfect?
Hi,
First of all 59 is pretty young. I'm nearly 10 years older than you and full of beans after surgery and radiation last year.
I'm confused, though. Did you have a "flap" to replace part of your tongue or to replace part of the tongue AND part of the jaw?
I've never heard of cancer growing on the flap or implant before but I guess any cells in the body can mutate over the decades. I'm glad you had yearly check-ups!
Some people have all their teeth out before radiation but I was left with about half my unsound teeth and I'm paying for it now. I'm getting quite a lot of dental decay. Sometimes I wish I'd had them out. On the other hand, the remaining teeth act as an anchor for my partial metal denture. The decay is fairly minor and seems to be fixable. I'd take lots of advice before getting your teeth removed.
You sound as if you've got through this shock diagnosis with your sense of humour intact. It's a tough thing to endure but this site will help you as you undergo treatment:)
Best wishes
Wow.. on the graft? I would ask if maybe there was something else going on (chronic irritation of the area?)
Anyway that said. They can replace the graft (first option SHOULD be surgery with this type of cancer - unless it's HPV related - HIGHLY UNLIKELY!) Are there nodes involved? If so (assuming you didn't have one way back) they should also be doing a neck dissection. If they find nodes involved then I would suggest - if they suggest it - a follow up with radiation.
Hugs and welcome - and this totally sucks!!!!
Hey Cheryl! Thanks for the note! Funny you mention irritation....Surgeon is baffled but also pointed out your "arm" (the upper left arm flap)is not supposed to be wet and in your mouth all the time so that may be a cause? Not smoked in 20 years but enjoy a beer and other wise considered in really good health..good teeth and regular visits to surgeon. No HPV related and after a VERY recent MRI no nodes this time nor last time (and I had a neck dissection last time) Never had rads and to be honest I trust the surgeon so much I will lean to surgery....at least I know about where that will take me.I appreciate all the comments from everyone! Cold enough for you here in Ontario?
The thing is - I noticed that my tongue has no sense of feeling. I mean a little but say you have a tooth rubbing against it, chances are you won't feel it to the extent your normal tongue would. It's possible that this is the cause. OR some situation similar. I am a non smoker and non drinker. But I did have a tooth that wreaked havoc on my tongue for years.
You're in Ontario? Toronto? If so Jonathan Irish at PMH is THE BEST. He did a hemiglossectomy and my tongue behaves almost normally. I can speak without a lisp etc... His Plastics guy is amazing.
He's the foremost Dr. for this type of cancer in Canada.
I agree on the surgery. Just remember sometimes cancer doesn't show up in the nodes immediately as it is microscopic but it may pop up after. Chances are after having had the neck dissection you should be okay but it has been known to jump sides. Anyway best of luck...
(BTW - I'm in total denial about the weather so I'm completely ignoring your comment.
!!!!)
hugs
If you are getting treatment at Princess Margaret Hospital, they will have a whole dental department that will look after your teeth and to give you whatever advice you may need. I will definitely consult them.
Brooklyn Bridge, your account of the original surgery is quite confusing, as asked by others but not answered yet. It might just be a terminology issue.
From what I am reading into it, your surgery did not involve removing bone from your arm and using that to rebuild the jaw. They used a flap created from the forearm and grafted that skin into your mouth. That flap is now where your recurrence is located. Am I understanding that correctly? A comment was made that seems to infer maybe having bone cancer from implanted bone from your arm. I know we use different words here than other countries.
Do you remember the name you used here previously?
As far as the teeth, as Gloria pointed out, you would need what we call here a dental oncologist to do a thorough evaluation as to what teeth may be an issue prior to radiation/chemo.
Over the years there have been a few folks here with squamous cell carcinoma of the skin after treatment. Some even around the PEG insertion site. I have often wondered if it was related, but all the doctors have ruled it out.
Best wishes for smooth sailing!
Good Morning Uptown and thanks for the note! You are almost right on. There was no "bone" involved...it was an upper left arm (near bicep) free form flap harvested and placed in my left tongue area after a T4 tumor was removed.The indications now are that what was/is "left" of my original tongue etc is fine...no recurrence. SCC has been found in the harvested implant and now I wait (until tomorrow) to find out what the plan for treatment is. Frankly I would just like to think this has been caught very early and surgery may be the way to go. details to follow. Thanks for the support! (and if anyone anywhere has heard of this please let me know!)
Thank you for clarifying for me. It makes much more sense, to me, anyway. You may be the first person I know who has skin cancer in your mouth!
Did you say you were here on the forum previously?
Best wishes for some good news tomorrow!
[quote]You may be the first person I know who has skin cancer in your mouth![/quote]
[quote]SCC has been found in the harvested implant [/quote]
Is there such a thing as SCC skin cancer? I think it is likely considered recurrence of the original SCC that spread to the the graft area.
Either way this is a very interesting and unique reporting. We wish you the very best in this new battle but do keep us updated with as much detail as you care to share.
Thanks
Don
Don, there are hundreds of thousands of cases of squamous cell skin cancer a year.
Thanks, learn something new all the time. The definition I held about the term SCC was that it was the soft mucous sort of skin such as the oral, vagina, inside the penis, anal areas. I did not associate skin in that category. I thought skin cancer as always being that type when people say look for changing blotches or lumps and bumps that start the change over time, that sort o thing.
How does SCC skin cancers present? I guess I could go look it up but I'll ask on behalf of other members to spare them the extra search. lol
Interesting that skin cancer is SCC, yet always referred to skin cancer while oral cancer is SCC. Did not both are types of the same SCC
There are other types of skin cancer such as melanoma, basal cell carcinoma, karposi sarcoma, besides squamous cell carcinoma.
Oral cancer isn't limited to SCC. ACC is the cancer of several members.
Squamous is a cell and there are a LOT of them in the body.
If you get it on your lip it can be a SCC.
And at this late a date (19 years) its a new cancer - not a recurrence. Hugs all.
Hi, Attempted to "update" my signature....does it look ok to you? So....its going to be surgery with the hopes of no RAD again...same surgeon and he is very positive although after seeing 5 docs last Friday no one could guess why after all this time the SCC is back...oh well forge ahead...thx again.
Thank you! Great job