Husband dx with Severe dysplasia of tongue!

kak0402

Hi...new here...and looking for information, information, information! My husband has had an on and off again irritation to his underside of tongue for some months now. He went last week for a biopsy from his oral surgeon and it came back today as severe dysplasia! I am trying to stay calm and need to keep him calm but I don't know what to do! We have to go see his oral surgeon on Saturday and he said he would talk and explain and give us some names of ENT doctors to go and see. Do we go to the ENT first or go to a cancer center? I don't want to waste time but don't know what the best route is to take. Maybe I am getting ahead of myself? I'm just so nervous...Since he called me I've been online doing research and finding anything I can about this. Even though it's severe, it is STILL pre-cancerous and hopefully they can just get rid of it. After the excision of the cells is done, what then? Is there radiation, chemo? Just time? Sorry for all the questions and I'll probably have a million more  

I have been trying to read all of the posts I can but wanted to try and start my own. Thank you to anyone out there that can help with info and support! 

katlou

Hi kak0402

I had a lesion that kept recurring under my tongue for around 6 years.  The first two biopsies were benign but showed some dysplagia.  The third time I had it biopsied I had them remove the entire lesion so I wouldn't have to worry about it anymore but unfortunately it came back as a superficial squamous cell carcinoma.  The excisional biopsy removed the entire cancer and my ENT said that I had the option of just wait and observe or wide re-excision and I opted to have a wide re-excision done to take out more tissue since the margins of cancer free tissue were very close.  That is all that I have had done so far...no lymph node removal and no radiation or chemo.  My ENT is now using the wait and observe approach and I am seeing him monthly for the time being.

I don't know if you would want to go to a cancer center at this point or not but I would definitely at least want to see an ENT who deals with oral cancer so your husband can be monitored very closely.

I am sorry that you and your husband are going through this.  It is a scary thing to deal with but it isn't cancer yet so you can be on top of this.  When I was getting my biopsies done and having them come back as benign the doctor didn't seemed all that concerned so I wasn't as on top of it as I should have been and waited a while to have the lesion completely removed the third time. I sometimes wonder if I had had my lesion completely removed months earlier would I have ended up with cancer.  I will probably never really know the answer to that.  See what your husband's oral surgeon has to say and go from there.

Good luck to you and please keep us posted and let us know how your are proceeding.

Billie67

I'm sorry you and your

I'm sorry you and your husband are going thru this. I recommend seeing the ENT first and going from there. It could be carcinoma In-situ, which is basically a pre cancerous state. The ENT will be the best to let you know about that. Just cross the briges as you come to them.  STAY OFF OF GOOGLE!! I promise you will only drive yourself crazy and you will also find the answer to be whatever your brain wansts to settle on. 

I'm not sure where you live but if your insurance will allow, ENT's at teaching hospitals are amazing! 

Once you get answers from an ENT we will all be here to help you with support and answer your questons as best we can. Promise you will stsy off of the internet.

ProustLover

Billie67 said:

I'm sorry you and your

I'm sorry you and your husband are going thru this. I recommend seeing the ENT first and going from there. It could be carcinoma In-situ, which is basically a pre cancerous state. The ENT will be the best to let you know about that. Just cross the briges as you come to them.  STAY OFF OF GOOGLE!! I promise you will only drive yourself crazy and you will also find the answer to be whatever your brain wansts to settle on. 

I'm not sure where you live but if your insurance will allow, ENT's at teaching hospitals are amazing! 

Once you get answers from an ENT we will all be here to help you with support and answer your questons as best we can. Promise you will stsy off of the internet.

Patch of leukoplakia ss dysplasia

My husband had a patch of leukoplakia on his tongue that was monitored for years as dysplasia.  It turned to stage 1 cancer and was removed without further treatment.  Within 15 months the tongue cancer metasticized to lymph node in neck and we joined Camp H & N big time.  He was seeing dental oncologist right along for the monitoring.  I'm in the same boat with katlou, wishing we'd understood more the first time around.  I now know that odds are fairly high for tongue cancer to recur.  Good luck with everything.  Let us know how it goes.

OKCnative

When I first was suspect of

When I first was suspect of an enlarged node in my neck I went to an oncologist (thinking I was cutting out a step to speed things along). He agreed it was probably cancer, but said I'd need to go to an ENT first and once it was confirmed he could help me. So, I saw an ENT, fired and ENT (he wanted to do neck dissection) and found a new ENT who did a needle biopsy and confirmed the SCC. He then sent me for a CT scan and a referral to the canccer center.

katlou

ProustLover said:

Patch of leukoplakia ss dysplasia

My husband had a patch of leukoplakia on his tongue that was monitored for years as dysplasia.  It turned to stage 1 cancer and was removed without further treatment.  Within 15 months the tongue cancer metasticized to lymph node in neck and we joined Camp H & N big time.  He was seeing dental oncologist right along for the monitoring.  I'm in the same boat with katlou, wishing we'd understood more the first time around.  I now know that odds are fairly high for tongue cancer to recur.  Good luck with everything.  Let us know how it goes.

been following your posts

I have been following your posts a little because your husband's situation sounds quite a lot like mine.  I wasn't getting concerning diagnoses with my first two biopsies and so I wasn't concerned about cancer.  My second biopsy said I had lichen planus and that I had mild dysplagia.  I think lichen planus is an autoimmune disease so I wasn't thinking cancer.  In hindsight I wish I had been more knowledgable/diligent although I did go to see an ENT for three biopsies over 6 years.  I am sorry that your husband's situation turned out as it did.  Did his ENT ever suggest removing the entire area of leukoplakia?

kak0402

katlou said:

Hi kak0402

I had a lesion that kept recurring under my tongue for around 6 years.  The first two biopsies were benign but showed some dysplagia.  The third time I had it biopsied I had them remove the entire lesion so I wouldn't have to worry about it anymore but unfortunately it came back as a superficial squamous cell carcinoma.  The excisional biopsy removed the entire cancer and my ENT said that I had the option of just wait and observe or wide re-excision and I opted to have a wide re-excision done to take out more tissue since the margins of cancer free tissue were very close.  That is all that I have had done so far...no lymph node removal and no radiation or chemo.  My ENT is now using the wait and observe approach and I am seeing him monthly for the time being.

I don't know if you would want to go to a cancer center at this point or not but I would definitely at least want to see an ENT who deals with oral cancer so your husband can be monitored very closely.

I am sorry that you and your husband are going through this.  It is a scary thing to deal with but it isn't cancer yet so you can be on top of this.  When I was getting my biopsies done and having them come back as benign the doctor didn't seemed all that concerned so I wasn't as on top of it as I should have been and waited a while to have the lesion completely removed the third time. I sometimes wonder if I had had my lesion completely removed months earlier would I have ended up with cancer.  I will probably never really know the answer to that.  See what your husband's oral surgeon has to say and go from there.

Good luck to you and please keep us posted and let us know how your are proceeding.

Thank you so much KatLou! I

Thank you so much KatLou! I appreciate your information and your support! He is beating himself up about "what if" I went to the doctor earlier, but as you said too, it is not cancer yet! So, we will take things day by day. We are going tomorrow to see his oral sgn and he will be giving us names of some ENTs that deal with this. When you had the re-exicision/lesion totally removed, may I ask how large of an area? Does/did it affect anything with your daily life? I am happy for you that you were able to remove all the cancer cells. I pray for you that it does not come back. I will stay in touch.

kak0402

Billie67 said:

I'm sorry you and your

I'm sorry you and your husband are going thru this. I recommend seeing the ENT first and going from there. It could be carcinoma In-situ, which is basically a pre cancerous state. The ENT will be the best to let you know about that. Just cross the briges as you come to them.  STAY OFF OF GOOGLE!! I promise you will only drive yourself crazy and you will also find the answer to be whatever your brain wansts to settle on. 

I'm not sure where you live but if your insurance will allow, ENT's at teaching hospitals are amazing! 

Once you get answers from an ENT we will all be here to help you with support and answer your questons as best we can. Promise you will stsy off of the internet.

Thank you Billie67! We talked

Thank you Billie67! We talked a lot yesterday, still realling in the news. It's definitely scary but like I told my husband...right now it is PRE cancer, so we can hopefully nip it in the bud before it has a chance to change. But, will definitely take one step at a time, listen to the ENTs and ask our questions with them. No more Google! I appreciate your support and will definitely keep you updated.

kak0402

I hear you OKCnative! Trying

I hear you OKCnative! Trying to stay ahead of it and cutting out lengthy steps but I do understand the process of getting seen by an ENT and then go from there. I am not sure if they will just take a larger area out first and then check margins or send him for some sort of scan? I guess we'll see. Are you doing ok now? I hope so!! I will keep you posted! Praying for you!

kak0402

ProustLover said:

Patch of leukoplakia ss dysplasia

My husband had a patch of leukoplakia on his tongue that was monitored for years as dysplasia.  It turned to stage 1 cancer and was removed without further treatment.  Within 15 months the tongue cancer metasticized to lymph node in neck and we joined Camp H & N big time.  He was seeing dental oncologist right along for the monitoring.  I'm in the same boat with katlou, wishing we'd understood more the first time around.  I now know that odds are fairly high for tongue cancer to recur.  Good luck with everything.  Let us know how it goes.

Wow ProustLover, I'm sorry

Wow ProustLover, I'm sorry that happened to your husband. My husband is mad at himself for not going to the doctor sooner but it really only has been bothering him for 3-4 months on a daily basis. It would come and go. He told me last night that a few years ago he had a little irritation on his tongue but then it just went away. So it's very weird. Now we are wondering if the entire area is "severe" or just where the Oral sgn took the small biopsy? I have read that the bottom of tongue/mouth is a bad area but we will try to keep ahead of this. One day at a time, right? I hope your husband is doing better! Thanks for your support!! I really appreciate it. Definitely strength in numbers! I will keep you updated!

katlou

kak0402 said:

Thank you so much KatLou! I

Thank you so much KatLou! I appreciate your information and your support! He is beating himself up about "what if" I went to the doctor earlier, but as you said too, it is not cancer yet! So, we will take things day by day. We are going tomorrow to see his oral sgn and he will be giving us names of some ENTs that deal with this. When you had the re-exicision/lesion totally removed, may I ask how large of an area? Does/did it affect anything with your daily life? I am happy for you that you were able to remove all the cancer cells. I pray for you that it does not come back. I will stay in touch.

measurements

When I had the biopsy done the pathology report shows a size of 0.8 cm x 0.6 cm tissue removed and this took care of removing the entire lesion.  My closest cancer free margin was only 1 mm  so when I had the wide re-excision done quite a large area needed to be excised.  The pathology report for the wide re-excision shows a size of 2 cm x 1.5 cm tissue removed and went fairly deep. The procedure hasn't affected my eating or speech but there is a tight feeling (not painful) under my tongue because when they sutured it closed the skin under the tongue was pulled tight.  When I had the biopsy done it was left open to heal and not sutured so that procedure didn't affect me at all once it healed.  Thank you for your prayers and concern for me and I hope this information is helpful.

katlou

kak0402 said:

Thank you so much KatLou! I

Thank you so much KatLou! I appreciate your information and your support! He is beating himself up about "what if" I went to the doctor earlier, but as you said too, it is not cancer yet! So, we will take things day by day. We are going tomorrow to see his oral sgn and he will be giving us names of some ENTs that deal with this. When you had the re-exicision/lesion totally removed, may I ask how large of an area? Does/did it affect anything with your daily life? I am happy for you that you were able to remove all the cancer cells. I pray for you that it does not come back. I will stay in touch.

clarification

I mentioned that my lesion was under my tongue and I just wanted to clarify that it was actually on the underside of my tongue like your husband's.  It was on the left ventral lateral border of the tongue.

GavinP

I had a white patch

I had a white patch (leukoplakia) on the side of my tongue in 2012/2013. The patch was biopsed and came back as moderate dysplasia.

Treatment involved removal of the white patch with laser ablation followed by close monitoring for the next few years.

Five years since the patch was removed it's not returned and I've been dischared from hospital with my dentist charged to keep an eye on my mouth.

As your husband has severe dysplasia his treatment might be a little more aggressive (some doctors actually consider severe dysplasia as essentially carcinoma-in-situ or Stage 0 Cancer) but probably not much more (he certainly won't be facing big reconstructions, chemo or radiotherapy at this point)

Dysplasia can often happen with no known cause but it can also happen in response to irritants. If this part of his tongue is rubbing on sharp or broken teeth or dentures that needs to be sorted out. If he is smoking he should stop. If he is drinking a lot he should cut down.

In many way's those of us that have pre-cancerous conditions have been given a "gift" by our bodies because we are getting a heads up that something is going seriously wrong with our cells but we're getting it before the situation gets too critical... For a LOT of people with oral cancer (or any cancer) they don't get that opportunity - Often times the lesion is cancerous on first appearance and that's when the treatments become much more challenging.

So in a way you should view this that he is actually lucky as he has time to get treatment and make any lifestyle changes he can to try and halt or reverse whatever damage he has to his cells.

Let us know how he gets on.

 

Good luck.

 

ProustLover

Dear kak0402 and katlou...

Dear kak0402 and katlou....GavinP's post is very interesting... laser ablation was never mentioned as an option when my husband's leukoplakia was monitored over the course of eight years.  In retrospect, this is the kind of thing I wonder about and wish had been an option for him.  If I'd had the benefit of this wonderful site. I'd have asked. In any event, He was part of a clinical study at a respected cancer center.  I believe that at some point the patch disappeared, but then showed back up on other side of tongue.  Every case is different, and bottom line is that we put faith in the docs.  What troubles me most is the confidence shown by the docs after his tongue surgery (hemiglossectomy) that they'd "gotten it all"  I'm not sure we would have opted for chemo or radiation at that point, but seems like an "adjuvant" should have been discussed.  (Again, you can beat yourself up wishing you'd known more at the time.)   As it stands, we're keeping calm and carrying on.  Best wishes to all.  

katlou

ProustLover said:

Dear kak0402 and katlou...

Dear kak0402 and katlou....GavinP's post is very interesting... laser ablation was never mentioned as an option when my husband's leukoplakia was monitored over the course of eight years.  In retrospect, this is the kind of thing I wonder about and wish had been an option for him.  If I'd had the benefit of this wonderful site. I'd have asked. In any event, He was part of a clinical study at a respected cancer center.  I believe that at some point the patch disappeared, but then showed back up on other side of tongue.  Every case is different, and bottom line is that we put faith in the docs.  What troubles me most is the confidence shown by the docs after his tongue surgery (hemiglossectomy) that they'd "gotten it all"  I'm not sure we would have opted for chemo or radiation at that point, but seems like an "adjuvant" should have been discussed.  (Again, you can beat yourself up wishing you'd known more at the time.)   As it stands, we're keeping calm and carrying on.  Best wishes to all.  

Hi ProustLover

Thank you for the information you provided.  I also found GavinP's post to be very interesting and informative.  I am sorry that your husband is going through so much with his cancer.  I, myself, have been concerned that the wide re-excision that I had done wasn't enough especially when others have had hemi-glossectomy and had recurrence.  I saw two ENTs, my last one at a cancer center at a hospital who consulted with a team,  about my cancer and both seemed only willing to go as far as a wide re-excision with me.  In fact they both said we could just wait and observe.  My cancer was very small at 1.5 mm so maybe that is why they didn't want to go any further but it is still on my mind as to when and if this is going to recur.  I wish the best for your husband and hope that he is able to get this under control for good.

Billie67

kak0402 said:

Thank you Billie67! We talked

Thank you Billie67! We talked a lot yesterday, still realling in the news. It's definitely scary but like I told my husband...right now it is PRE cancer, so we can hopefully nip it in the bud before it has a chance to change. But, will definitely take one step at a time, listen to the ENTs and ask our questions with them. No more Google! I appreciate your support and will definitely keep you updated.

Good for you!! I promise that

Good for you!! I promise that we will all be here for you and you will not be alone!! 

ProustLover

katlou said:

Hi ProustLover

Thank you for the information you provided.  I also found GavinP's post to be very interesting and informative.  I am sorry that your husband is going through so much with his cancer.  I, myself, have been concerned that the wide re-excision that I had done wasn't enough especially when others have had hemi-glossectomy and had recurrence.  I saw two ENTs, my last one at a cancer center at a hospital who consulted with a team,  about my cancer and both seemed only willing to go as far as a wide re-excision with me.  In fact they both said we could just wait and observe.  My cancer was very small at 1.5 mm so maybe that is why they didn't want to go any further but it is still on my mind as to when and if this is going to recur.  I wish the best for your husband and hope that he is able to get this under control for good.

Thanks a lot!   They'll keep

Thanks a lot!   They'll keep a close eye on you, and all willl be well.

GavinP

ProustLover said:

Dear kak0402 and katlou...

Dear kak0402 and katlou....GavinP's post is very interesting... laser ablation was never mentioned as an option when my husband's leukoplakia was monitored over the course of eight years.  In retrospect, this is the kind of thing I wonder about and wish had been an option for him.  If I'd had the benefit of this wonderful site. I'd have asked. In any event, He was part of a clinical study at a respected cancer center.  I believe that at some point the patch disappeared, but then showed back up on other side of tongue.  Every case is different, and bottom line is that we put faith in the docs.  What troubles me most is the confidence shown by the docs after his tongue surgery (hemiglossectomy) that they'd "gotten it all"  I'm not sure we would have opted for chemo or radiation at that point, but seems like an "adjuvant" should have been discussed.  (Again, you can beat yourself up wishing you'd known more at the time.)   As it stands, we're keeping calm and carrying on.  Best wishes to all.  

Hi Proust,

 

A "watchful waiting" approach was actually offered as a possible course of action for my patch of leukoplakia but my surgeon didn't recommend it - He thought that it needed to be treated quite aggressively and should be fully excised with laser ablation (I think they sometimes go for "watchful waiting" if the patient is a heavy smoker or drinker etc... And they are able to change their lifestyle choices - In that situation the dysplasia/leukoplakia can sometime resolve itself once the irritating factor is removed) 

In my case my leukoplakia was "idiopathic" (no known cause or trigger) which study's show actually has a greater potential for turning to malignancy than leukoplakia caused by smoking for example... So laser ablation was recommended by my doctor and that's what I went with.

I'm in the UK BTW so it's possible we have slightly different criteria for treatment options compared to US for example.

ProustLover

GavinP said:

Hi Proust,

 

A "watchful waiting" approach was actually offered as a possible course of action for my patch of leukoplakia but my surgeon didn't recommend it - He thought that it needed to be treated quite aggressively and should be fully excised with laser ablation (I think they sometimes go for "watchful waiting" if the patient is a heavy smoker or drinker etc... And they are able to change their lifestyle choices - In that situation the dysplasia/leukoplakia can sometime resolve itself once the irritating factor is removed) 

In my case my leukoplakia was "idiopathic" (no known cause or trigger) which study's show actually has a greater potential for turning to malignancy than leukoplakia caused by smoking for example... So laser ablation was recommended by my doctor and that's what I went with.

I'm in the UK BTW so it's possible we have slightly different criteria for treatment options compared to US for example.

Thanks Gavin -your insights

Thanks Gavin -your insights and experience could be a real game changer and lifesaver for any reader struggling with leukoplakia.  In husband's case, there were no smoking or drinking factors.  But because the patch stayed stable, and would even go away at times, the wait and see approach seemed to make sense at the time. It was during surgery that the HPV+ connection was found.

GavinP

ProustLover said:

Thanks Gavin -your insights

Thanks Gavin -your insights and experience could be a real game changer and lifesaver for any reader struggling with leukoplakia.  In husband's case, there were no smoking or drinking factors.  But because the patch stayed stable, and would even go away at times, the wait and see approach seemed to make sense at the time. It was during surgery that the HPV+ connection was found.

Thinking about it...

From what your saying (and what I've been told) your husband really should have had that patch of dysplasia removed because being a non-smoker actually made it higher risk for malignant transformation.

I'm surprised they went for "watchful waiting" but it's all water under the bridge now. I hope he continues with his recovery.