My biopsy results came in this morning negative for SCC. Doctor here is recomending I get to UPMC to have them look as this is a nasty ulcer at best and above his skill level after all the treatments I have had. I have an appointment at UPMC on Tuesday so that is set.

I did have a chance to talk to my doctor at UPMC before the biopsy results came in and he said they run into this more than you would think. Ulcers pop up months after treatment for no good reason.

Biopsy did show necrosis which is a nasty animal to be dealing with in its own right so I'm hoping we can get this stoped with a minimal loss of tissue. Doctor at UPMC said that necrosis may require surgery in itself.

All in all good news. I'll live with the inconvinience of a minor surgery if thats whats called for.

Thanks to all for the good wishes

GREAT NEWS. Ulcers and necrosis are indeed nasty but much better than the cancer being back. Now quit being so competitive and trying to have more recurrences than the rest of us
Seriously, glad you dodged the bullet brother.
Charm

Kelly: That is wonderful news and the kind we all pray to be able to post. Congratulations and good luck with the other problem. You'll do great.
julieann

Kelly - fantastic to hear that. Whew! I know that whatever problems you might have with the necrosis you'll get through them with courage.

Congrats!

That is AWESOME news, Kelly!! Now you can breathe a little easier and start fighting the necrosis. THanks for the update! Keep in touch and let us know how you are doing.

Great to hear that it's not cancer.

Kelly,

I am glad to hear the NO CANCER part.

So happy to hear it's not cancer and one less recurrence for everyone part of this forum. Trust you find the right doctor and needed proceedure to heal.

Kelly,

Glad to hear it's not cancer.

Take care,
Connie

YEAH KELLY!!!!!

Congrats on the results!!!!

Be well!!!!

Watching Stand Up To Cancer as I check in here and I can't say enough how good it is to see your post. GREAT NEWS!!! So relieved for you!

Woohoo! Great news that it is not cancer!

Kelly, so happy to hear that it is not cancer!

Yeah! Soooo sooo very happy for you.

Kelly,

Great news! Your medical team might recommend Hyperbaric Oxygen (HBO) treatment before planning surgery. Many of us had HBO for ORN. HBO helps healing and also blood flow circulation in damaged bone.

Best wishes

Karen

Karen,

I forgot about the HBO, thanks for mentioning it. I'll remember to talk with the doctor about that. This is all in tissue with no bone involvement but I seem to remember that HBO is used for tissue issues as well as bone.

They have me scheduled for a CT on Tuesday and surgery on Thursday. My ENT here had a chance to talk with the team in Pittsburgh and I think this thing is big enough to merit some surgical removal of necrotic tissue. UPMC also said that the biopsy was not very deep in the tissue and did not get deep enough to rule out an underlying tumor, so they want to get in there and make sure there is no underlying disease.

I'll keep you all posted as the treatment progresses.

So very happy for you. Fabulous news, and I bet you will sleep well tonight. Happy Dance!!!

Donna

I have been following your posts Kelly and am so thrilled to read that it is not cancer again
Best wishes for the scan and surgery next week.
Gabriele

Kelly!

My heart feels about 10 pounds lighter as I read this thread! I am so HAPPY!

You have been through so much and to know that this is NOT cancer...you can get this necrosis BS done with and keep on living!

Best wishes!
xoxo,
Kerri

Having a bad night,
Every time I look back in and see the Ulcer it is bigger and meaner. The biopsy only said there was no cancer at the surface which was dead ulcerated tissue. ENT did not take a punch biopsy but used a snip tool to get a surface sample There is still a chance that this thing is one big tumor underneath. If they have to cut this thing out as cancer they will have to take the whole back of my mouth and probably half my upper jaw.

I guess the thing that got me the most was the ENT here when he first looked at it. He asked me if I really wanted to keep fighting this. He said hospice is an option. He described the problem with recurrent localized cancers and the fact that they have a tendency to come back faster and more aggressively each time. I think he was hinting at the idea that this would not be the last surgery if I chose that option and it would be brutal.

As I get nearer to my appointment in Pittsburgh I am faced with just that question �When to say when�. Whatever happens, it�s going to be painful. This thing is now bigger than a quarter and hurts like hell. Most of it covers my soft palet so I am worried about losing that. The one thing I did have left was my voice and the ability to drink fluids. I�ll lose most of both of those abilities with the soft palet gone.

Time to break out a Zanex and try and rest before all the travel.

I'm very sorry to hear this, Kelly - but we still don't know that it's not an ulcer. Prayers and best wishes for you.
Maria

Kelly, I'm keeping everything crossed for you, my dear, and hoping it all turns out OK. As Maria says, you still don't know that it's NOT an ulcer. Linda

Hey kelly
Settle petal!!! Your ENTs comments don't count anymore. He said those things when he thought he was looking at a classic re-presentation of your SCC and the biopsy suggested it isn't.

Is it right on the spot where your radiation was? Just as likely to be radiation damage if it is and which is no picnic but not spreading as you are imagining. As your ENT suggests, recurrences can come back faster and more aggressive than before but from dime size to quarter size in a matter of days seems a bit much for a SCC.

Your voice will not disappear unless they take your voice box which is a long way further south and drinking fluids may also be unaffected. Issues likely to completely kybosh drinking are also located south of your problem, although I appreciate an incomplete soft palate might present some reconstruction or retraining challenges. It is really dependent on how much they have to cut out but try not to jump ahead (as I have just done) in joining the dots until you know what the overall picture is supposed to look like.

Take your Zanex and try really hard to stop over thinking this (says I, queen of the over thinkers).

Karen

Kelly

Yeah, very familiar with those "bad nights". It is dispiriting to hear such negative comments from your ENT, but it's very important to put them into the context of the speaker. I'd bet serious money that this ENT would not have lasted 5 minutes in the Amazon, let alone conquer even a small percentage of the odds you have routinely beaten in your life. No doubt in my mind that this ENT would just give up and die in a hospice rather than continue fighting. But you?

You are young, with a wife and family. The surgery just isn't the end of the world. Of course it's brutal, but honestly, would this be the first time you did brutal? I think not. If an old guy like me can have the entire floor of mouth/base of tongue carved out, a flap put in, jaw split, neck dissection, traech in and permanent feeding tube and then need 12 days in the hospital to recover, you can do this.

Time for you to hook up with an experienced prosthodontist. Mine made me two different palate drops to help with speech. Plus a good prosthodontist can make excellent oral prosthesis.

The question of when to say when can only be answered by each of us, and I used to really really hate everyone telling me how "tough" I was, and what a fighter I was - but you know what? It's true and it's true for you. So you got an extremely candid self assessment of your ENT's fighting spirit and spunk, don't let it spook you.

Let me gently remind you that you have traveled off the beaten path before, that's why you are a member in good standing of the Adventurer's club and your ENT is not.
Having said that, IMO this is tougher than anything else you have done but it's a struggle worth fighting.

Keep the Faith
Charm

What a horrible bedside manner!!!! Doctors dont know the damage they can do to a patient when they have these types of discussions. That doctor must not know you very well. Dont let their words get to you!!!! After everything you have gone thru, this is just another bump in the road to make yo well.

The biopsies I have had were just little snips of tissue too. But those tiny snips were able to determine caner or no cancer. Hope that helps to ease your mind some.

After doing radiation twice, your body isnt able to heal very quickly. Rads does a number on us and it really makes healing difficult! Im so glad you are heading to another center for help! You have been a wonderful advocate for yourself in the past and Im certain you will continue to strive for answers with this new issue.

Keep us posted. Good luck in Pittsburgh!!!!

I met with my doctor here at UPMC today after having a CT. Dr. and radiologist both felt CT was very indicative of an ulcer. My Doctor was not real happy with the ENT back home telling me it looked like a textbook tumor or the fact that he questioned whether I still wanted to fight this thing and had I considered Hospice. He said �I wish these guys would just take the biopsy and shut up until the results come in�.
He let me know that it would not bother him at all if I just went home as we have a negative biopsy and a CT backing it up. But it is a nasty ulcer and he said he can clean it up a bit while at the same time taking a few more samples just to make sure we see no disease. I am already scheduled for the surgery suite on Thur. so he is leaving it up to me. Part of me just wants to go home and the other part says go ahead and do the procedure. It is a minor one and he will not be cutting enough to need any stiches and I�ll be under less than an hour.

I also keep wondering what would have happened if I took the other doctor�s advice on the hospice. Has anyone ever been evicted from a hospice for not having a fatal condition?

Great news, Kelly! I say to stay there and get it done. You don't have to wait long and you seem to be in very capable hands. Best wishes and keep us posted.
Xoxo,
Kerri

Kelly211

Kerri and I seem to be singing the same chapter and the same verse these days in our posts. Like the song says:
Stay, just a little bit longer - stay stay stay...."
Great news brother
Charm

Arent you so happy that you have truly excellent doctors to make up for the ones who have bad bedside manners? Boy what a disservice that guy is to his patients. Have you considered notifying your insurance company about him?

Best wishes with the procedure on Thursday. I kinda think you will be having it done. Sounds simple enough and will take care of your problem.

Kelly!!! You are amazing!!!

I am so sorry you had to endure the words of that insensitive Dr. why on earth would he/she say that to any patient no matter what thier condition. Makes me so MAD!

Good for you for never giving up.
God bless you and I wish you only very good health from her on out.

Hi Kelly - So glad to hear your latest good news! That ENT with hospice on his mind is a real downer. He must have been absent the day they taught Bedside Manners. Hope everything goes just fine with the procedure.

RELIEF!!!!

Thank you all for the kind words.

I didn't have to think long about getting the procedure done, just asked my wife what she thought. I'll be getting the procedure.

I just knew you would get this done. You are a fighter and will go to the ends of the earth to be able to keep fighting.

Good luck tomorrow!!!!

Please post when you can, be well!!!

Hi, Kelly,

Just adding my good wishes for your procedure tomorrow.

Best of luck, my friend! I hope this goes as smoothly as possible! I'll be thinking of you!

xoxox,
Kerri

So happy for you! Having a milder moment... Trust no one... Or at least no one who says stupid things.

Good luck with your procedure tomorrow Kelly, we'll all be thinking of you. Afterwards, when you feel beter, please go visit that stupid ENT, walk up to him, look him in the eyes, and say, "Na, na, na, na, ha." Give him something to think about. What an idiot. Anyway, hope to hear your good news soon.
julieann

Great suggestion, Julieann just gave you! Maybe the "Na, na, na, na, ha." part would be a good phrase for the the App OCF is developing. Let us know how you are doing.

I had the procedure today and I'm glad I stayed. If I had gone home it would have been a much longer recovery and probably not as effective.

Doctor said biopsies would be in in a day or so but he saw nothing that looked like cancer to him. Given the fact that oral cancer surgery is a huge part of his practice I am very relieved.

What used to look like a miniature field of cauliflower now is just very pink skin (that new skin look you see when you pull the top off a blister). Doctor removed all the necrotic tissue. He also did a neat little procedure with my Uvula. One spot on my soft palet was deeply necrotic. The doctor sliced my Uvula in half, top to bottom, and then folded one half of the Uvula over the spot and stitched it in. Each half of the Uvula was still attached at the top so the half he used to fill the bad spot had its own blood supply. Luckily the bad spot was close to the Uvula. Now I have a very skinny Uvula as one half is otherwise occupied.

I plan on writing the ENT back home a letter. I have to assume he will be treating other patients no matter how I react. I would rather send him a letter that tempers his inclination to declare �cancer� and all the attendant bad stuff that goes with it so quickly. Maybe I can convince him to wait until the biopsy results are in before saying too much. I would rather be firm and convincing and hopefully change his behavior, than just write an in your face letter that pisses him off.

All in all a very scary few days with a good result from a great doctor.

On my way home in the morning.

Great result Kelly. Fabulous attitude.
Tammy

A sigh of relief for you and best wishes moving forward!

I am just so happy for your wonderful news, Kelly! Good idea about writing a letter - that way you can get all the facts in and he will have the letter around to remind him of a better way to proceed with future patients. This is just my opinion, but if you can possibly find some way to set a positive tone to the letter, (or find some minor thing to include as a complement) he may be more likely to accept a suggestion for a different way to handle a situation like yours that caused you so much stress and worry). And you might give him a link to the Oral Cancer Foundation, inviting him to check out all the latest information found here for doctors as well as for patients and caregivers.

I'm so happy to hear everything went well! Thank you for the prompt update! I hope you'll be feeling better in no time .

Best wishes,
Kerri

Hi Kelly, Glad to hear the good news! Congratulations!

Regarding your letter, great idea. So much damage is done by doctors who make assumptions. J is still paying the price for his first ENT's failure to order a biopsy of what appeared on the PET.

Anne-Marie's comments are right on the money. I particularly like her suggestion about sending your ENT the link for the OCF.

Regarding our situation, I plan to send a letter to J's ENT, RO, and the diagnosing pathologist as soon as I am able to keep my anger about the matter under control.

Sandy

Great news Kelly! Congrats on Not cancer! Take care of what you do have and keep the faith!

Got my official biopsy results back from the samples they took during my surgery. They show no cancer which was expected but a tremendous relief anyway.

My doctor said it took more time as they ordered a specific review of the cell structures. They show a permanent change due to radiation exposure which was also expected but now we have a detailed baseline. I�ll have to keep an eye on this part of my mouth as necrosis will now be a long term condition I will have to be vigilant about checking.

All in all good news countered with some physical changes I�ll have to live with. Healing is going very slowly but a little better each day.

Definitely better than checking yourself into a hospice !!!! Hugs - you have no idea ho glad I am.

YAAAAHOOOO!!!

Excellent!!!

Great news!!! Congrats!

GOODY, GOODY, GUM DROPS!
Uh oh Kelly, you may not be old enough to know that expression. It means YIPPEEEEEEEEEEEE!
CONGRATULATIONS!

julieann

Thanks for sharing. Pain after treatment was perplexing everyone. Had the biopsy and it came out necrotic...no cancer.

Problem is my Dr's don't know what to do now. I will tell them about you

Sax,

My doctors were considering just leving it alone and keeping me on antibiotics and salt water rinses. They decided to go in and clean it up which involved scraping off the necrotic tissue and filling a dead area with part of my Uvula. I think the cleaning part is helping to speed up the recovery but who knows. I asked the doctor what he thought and he said these things can linger for a long time. He said I could definitly still have painfull ulcers through October.

Under the necrosis is an ulcer so that's where the pain is comming from. I am also back to the magic mouthwash which is helping a lot.