Tongue biopsy...

Lorikat

I had a tongue biopsy on October 26, 2016.  It's now Nov 27, 2016 and my tongue still burns and hurts.  The biopsy was a fairly large excision of a "lesion" and hurt like hades!  It apparently let thrush loose in my mouth and OMG!  Felt like my mouth was filled with embers!  

Biopsy came back moderate dyspepsia something or other, considered precancerous.  Biopsy said there was one margin that was not clear...   here's the thing...  I'm a five year survivor from SCC anal cancer....  HPV related.  This scares me.....  not sure what to do...   chemo from that tx would have gotten rid of it if it was there four or five years ago.   Good grief....   any suggestions?sorry!  Submitted twice!

Noellesmom

What does the doctor say?

Dysplasia is a precancerous condition.

Have you met with your doctor to discuss options? 

Lorikat

Noellesmom said:

What does the doctor say?

Dysplasia is a precancerous condition.

Have you met with your doctor to discuss options? 

I only saw my dentist and an

I only saw my dentist and an oral surgeon.  I will not go back to surgeon as he was not very caring.  I suppose an ENT is the doctor I need to see?  Surgeon just said watch it...  too too scary!  The anal cancer nearly got me!

GavinP

Moderate Dysplasia

Hi,

This sounds a lot like what I had in 2013.

In 2012 I developed a thickened white patch on the right-hand side of the lateral border of my tongue. I was refered to hospital and had a biopsy. The results came back as Leukoplakia with moderate dysplasia - A Pre-Cancerous lesion.

My maxfax surgeon told me there was two approaches they could take.

1. Watch and wait.

2. Remove the patch with laser ablation.

He recommended removing the patch. He said my condition needed to be treated aggressively. 

The reason he went for a more aggressive approach with me was because the dysplasia was moderate (apparetly if dysplasia is mild, watchful waiting can be recommeneded but if the pre-cancerous potential is moderate or severe a more aggresive approach is needed) 

The other reason he elected to completely remove to patch was because it was "idiopathic" I.E, it wasn't caused by any known irritant (I don't smoke etc) When dysplasia is caused by a known irritant (such as smoking or drinking a lot of alcohol) if you stop the irritating factor, recovery of the cells can sometimes occur on it's own but obviously if theres no known reason for the pre-cancerous lesion to have occurred it needs to be treated aggresively. Perversely, dysplastic lesions NOT caused by smoking have worse outcomes than dysplastic lesions caused by smoking. Which means a lesion thats not been caused by smoking is more likely to continue the progression to cancer than those pre-cancerous lesions that have been caused by smoking which seems to remain at the pre-cancerous stage for a long time and often never turns malignant.

The final reason for the aggresive approach was because the tongue, along with the floor of the mouth, is a high risk area for dysplasia. Lesions in other parts of the mouth, such as the cheeks or the roof of the mouth are less likely to develop into cancer compared to the side, bass or bottom of the tongue and floor of the mouth.

Now you don't say whether you are a smoaker or not but even if I was a smoker, if I found out I had a dysplastic lesion in my mouth (particularly at the moderate or severe end of the spectrum) I would want it removed as soon as possible.

Far be it from me to disagree with the surgeon but I think you have been given an incorrect treatment plan and you need to find a surgeon who will remove the lesion for you. 

Look at it this way, those of us that are "pre-cancerous" are in a privileged position in some ways. Our bodies are giving us a "heads up" that things aren't right. When you read forums like this one, 90% of the time the lesions people get are cancerous from their first appearance, which can lead to needing very serious treatments like partial tongue removals and radiotherpay.

On the other hand, we can seek treatments, make life style changes, etc. Before the situation gets too critical. That's quite an amazing opportunity but we have to seize our chance. 

Ultimately you have to think what your "watching and waiting" for? Cancer to develop? Is it not better to just get rid of the dodgy cells before your life is potentially at risk rather than after?

Finally, with regards to the pain you are experiancing after the biopsy, I can't really comment as my biopsy site healed up quickly. Though it took around three months for my tongue to heal after the laser ablation surgery.

I was told by my surgeon that because the cells are abnormal the tissue often doesn't heal as well as healthy tissue - Even now some of the scaring from the operation on the side of me tongue gives me a small amount of discomfort at times - So the fact you are still suffering pain a month after the biopsy is probably a signal for what we already know, namely that the cells in that part of your mouth are pre-cancerous and things are not healing up like they would if the tissue was healthy. Of course getting an infection in the biospy wound hasn't helped things either. Did your previous brush with the C leave you somewhat immune comprimised?

Let us know what you decide to do and how you progress.

Good luck.

Lorikat

Thank you so much Gavin!

Thank you so much Gavin!  Everything you said is what has worried me!  I have never smoked nor do I drink alcohol of anytime.  I saw a different ENT today who lectured me on the way dentists and oral surgeons 'dump' their difficult cases on doctors like him.  He never even really looked at anything, just said he wasn't getting in the 'middle of a storm'!   Seeing regular internest tomorrow.  I will continue to update....  thanks again!

GavinP

Lorikat said:

Thank you so much Gavin!

Thank you so much Gavin!  Everything you said is what has worried me!  I have never smoked nor do I drink alcohol of anytime.  I saw a different ENT today who lectured me on the way dentists and oral surgeons 'dump' their difficult cases on doctors like him.  He never even really looked at anything, just said he wasn't getting in the 'middle of a storm'!   Seeing regular internest tomorrow.  I will continue to update....  thanks again!

Amazed

Hi Lorikat,

Well, I'm amazed at the way you are being treated! My Max-Fax surgeon (working within the NHS in the UK) was only too happy to remove my lesion. In-fact he was the one that was insistent that it should be removed.

The latest doctor you saw, telling you he is "is not getting in the middle of the storm" is just no help to you what whatsoever. What are you supposed to do with that?

I wonder whether you should contact a cancer center? Whilst your lesion isn't cancerous it is pre-cancerous and it's possible a cancer center would have better expertise on management  of pre-cancerous lesions?

I think there are quite a few people here who have been treated by cancer centers in the US so they may be able to advise whether these centers manage pre-cancerous lesions as well cancers.

Good luck and keep us posted.

Lorikat

GavinP said:

Amazed

Hi Lorikat,

Well, I'm amazed at the way you are being treated! My Max-Fax surgeon (working within the NHS in the UK) was only too happy to remove my lesion. In-fact he was the one that was insistent that it should be removed.

The latest doctor you saw, telling you he is "is not getting in the middle of the storm" is just no help to you what whatsoever. What are you supposed to do with that?

I wonder whether you should contact a cancer center? Whilst your lesion isn't cancerous it is pre-cancerous and it's possible a cancer center would have better expertise on management  of pre-cancerous lesions?

I think there are quite a few people here who have been treated by cancer centers in the US so they may be able to advise whether these centers manage pre-cancerous lesions as well cancers.

Good luck and keep us posted.

So true Gavin..  no help at

So true Gavin..  no help at all!  I have sent everything to MD Anderson, a cancer center here in the US.  Slides and all.  Now the wait begins!

GavinP

Good decision

Good decision to send all your info to MD Anderson.

Hopefully they will have some treatment options for you rather than all the hand wringing and running round in circles you've been getting so far.

Let us know what they say when you hear back from them.

Lorikat

GavinP said:

Good decision

Good decision to send all your info to MD Anderson.

Hopefully they will have some treatment options for you rather than all the hand wringing and running round in circles you've been getting so far.

Let us know what they say when you hear back from them.

Will go to MDA first of April

Will go to MDA first of April.  This will give biopsy site time to heal.  And wish me luck, I see a different ENT on Friday and I hope he will watch things until then.  Thanks for the encouragement.  It is much appreciate.

armana

Lorikat said:

Will go to MDA first of April

Will go to MDA first of April.  This will give biopsy site time to heal.  And wish me luck, I see a different ENT on Friday and I hope he will watch things until then.  Thanks for the encouragement.  It is much appreciate.

You are so lucky

I know it is scary but should consider yourself so lucky you have found this early.

Lorikat

armana said:

You are so lucky

I know it is scary but should consider yourself so lucky you have found this early.

I do consider myself lucky.

I do consider myself lucky.  I am a survivor of melanoma and squamous cell anal cancer.  The second one was really frightening...

 

GavinP

Lorikat said:

Will go to MDA first of April

Will go to MDA first of April.  This will give biopsy site time to heal.  And wish me luck, I see a different ENT on Friday and I hope he will watch things until then.  Thanks for the encouragement.  It is much appreciate.

Good news....

Hi Lorikat,

Great to hear that this is being taken seriously and MDA will be keeping a watch on you from here on in.

It almsot certainly won't happen but should the lesion develop further or start to bleed or give you excessive pain you will need to be seen by MDA before 1st April but all being well things will remain at moderate dysplasia.

Keep us informed on your progress.

Bazzer5115

Hello to everyone,this is my

Hello to everyone,this is my first post although I have visited this site many times for references.I am a 11yr survivor of stage 3 tonsil cancer and things have been going well but the last 2 months things are going from bad to worse.Due to my tongue becoming sore recentlyi was referred to the local Maxio facial dept.A biopsy was taken of my tongue which revealed severe dysphasia!I was told that it needs removing by laso,which is being done on 16/12/16.Really worried about it because of previous radiation I am concerned about heally time.Also to make matters worse I have had a "numb chin" for about 2 months,seems such a small matter that I didn't even mention it to the consultant.Now my lower lip is numb.Goggled "numb chin" and the answers are all pointing to a secondary cancer in the mandible (lower jaw bone)sometimes spread from the lungs.I am so so scared now I don't know what to do with myself.Up until these 2 problems I have been positive as I thought I had beaten this.I am not normally the worrying type,haven ridden in championship motor cross and road racing until a couple of years ago.But this has  brought it all back to me,and convinced me the battle is lost.Anbody else had these problems especially the "numb chin",if you google it you will see why I am so scared.

armana

Bazzer5115 said:

Hello to everyone,this is my

Hello to everyone,this is my first post although I have visited this site many times for references.I am a 11yr survivor of stage 3 tonsil cancer and things have been going well but the last 2 months things are going from bad to worse.Due to my tongue becoming sore recentlyi was referred to the local Maxio facial dept.A biopsy was taken of my tongue which revealed severe dysphasia!I was told that it needs removing by laso,which is being done on 16/12/16.Really worried about it because of previous radiation I am concerned about heally time.Also to make matters worse I have had a "numb chin" for about 2 months,seems such a small matter that I didn't even mention it to the consultant.Now my lower lip is numb.Goggled "numb chin" and the answers are all pointing to a secondary cancer in the mandible (lower jaw bone)sometimes spread from the lungs.I am so so scared now I don't know what to do with myself.Up until these 2 problems I have been positive as I thought I had beaten this.I am not normally the worrying type,haven ridden in championship motor cross and road racing until a couple of years ago.But this has  brought it all back to me,and convinced me the battle is lost.Anbody else had these problems especially the "numb chin",if you google it you will see why I am so scared.

Start a new Post

You should start a new post in order to get the best response..

Good luck

Lorikat

GavinP said:

Moderate Dysplasia

Hi,

This sounds a lot like what I had in 2013.

In 2012 I developed a thickened white patch on the right-hand side of the lateral border of my tongue. I was refered to hospital and had a biopsy. The results came back as Leukoplakia with moderate dysplasia - A Pre-Cancerous lesion.

My maxfax surgeon told me there was two approaches they could take.

1. Watch and wait.

2. Remove the patch with laser ablation.

He recommended removing the patch. He said my condition needed to be treated aggressively. 

The reason he went for a more aggressive approach with me was because the dysplasia was moderate (apparetly if dysplasia is mild, watchful waiting can be recommeneded but if the pre-cancerous potential is moderate or severe a more aggresive approach is needed) 

The other reason he elected to completely remove to patch was because it was "idiopathic" I.E, it wasn't caused by any known irritant (I don't smoke etc) When dysplasia is caused by a known irritant (such as smoking or drinking a lot of alcohol) if you stop the irritating factor, recovery of the cells can sometimes occur on it's own but obviously if theres no known reason for the pre-cancerous lesion to have occurred it needs to be treated aggresively. Perversely, dysplastic lesions NOT caused by smoking have worse outcomes than dysplastic lesions caused by smoking. Which means a lesion thats not been caused by smoking is more likely to continue the progression to cancer than those pre-cancerous lesions that have been caused by smoking which seems to remain at the pre-cancerous stage for a long time and often never turns malignant.

The final reason for the aggresive approach was because the tongue, along with the floor of the mouth, is a high risk area for dysplasia. Lesions in other parts of the mouth, such as the cheeks or the roof of the mouth are less likely to develop into cancer compared to the side, bass or bottom of the tongue and floor of the mouth.

Now you don't say whether you are a smoaker or not but even if I was a smoker, if I found out I had a dysplastic lesion in my mouth (particularly at the moderate or severe end of the spectrum) I would want it removed as soon as possible.

Far be it from me to disagree with the surgeon but I think you have been given an incorrect treatment plan and you need to find a surgeon who will remove the lesion for you. 

Look at it this way, those of us that are "pre-cancerous" are in a privileged position in some ways. Our bodies are giving us a "heads up" that things aren't right. When you read forums like this one, 90% of the time the lesions people get are cancerous from their first appearance, which can lead to needing very serious treatments like partial tongue removals and radiotherpay.

On the other hand, we can seek treatments, make life style changes, etc. Before the situation gets too critical. That's quite an amazing opportunity but we have to seize our chance. 

Ultimately you have to think what your "watching and waiting" for? Cancer to develop? Is it not better to just get rid of the dodgy cells before your life is potentially at risk rather than after?

Finally, with regards to the pain you are experiancing after the biopsy, I can't really comment as my biopsy site healed up quickly. Though it took around three months for my tongue to heal after the laser ablation surgery.

I was told by my surgeon that because the cells are abnormal the tissue often doesn't heal as well as healthy tissue - Even now some of the scaring from the operation on the side of me tongue gives me a small amount of discomfort at times - So the fact you are still suffering pain a month after the biopsy is probably a signal for what we already know, namely that the cells in that part of your mouth are pre-cancerous and things are not healing up like they would if the tissue was healthy. Of course getting an infection in the biospy wound hasn't helped things either. Did your previous brush with the C leave you somewhat immune comprimised?

Let us know what you decide to do and how you progress.

Good luck.

Update:

saw doctor and having surgery on 30 Dec to remove remainder of lesion.  Wish me luck!

GavinP

Lorikat said:

Update:

saw doctor and having surgery on 30 Dec to remove remainder of lesion.  Wish me luck!

Great news

Hi Lorikat,

Great to hear you are getting the rest of the lesion removed on 30th December.

You'll have a pretty sore mouth for New Year but at least it'll be done.

Good luck. You'll do great.