Husband dx with Severe dysplasia of tongue!

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 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.

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.

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.

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 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.

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.

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.  

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 we will all be here for you and you will not be alone!! 

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.  

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 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.

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.