Hello every one .... I and my husband are taking care of my father inlaw , who is suffering from tongue cancer.....he was diagnosed last year in march.. he went through a surgery which was successful but after few months the cancer came back ... and then he had to go through radiation and chemo/cetaxomab treatment... since the cancer was on tongue... they put the peg in for feeds.... now its been 4 months since the last radiation..... and he has not improved much ... infact his pain went up... and they had to put him on hydromorphone every 4 hours .... they did a CT scan on him and it came clear so we are happy but the thing is that the doc are saying that part ( size of a quarter)of his tongue is dead and the doc says that this is a very rare thing so we are wondering if any one else has had anyhting like this? and what did you do about it? any feed back is welcomed...the doc tor says that this will fall of on its own...and we are perplexed about that reply.... he has his next apointment next week so I am trying to get some research done on this... Thank you all for reading this ..

Saira,

Are you saying that one part of his tongue "is dead"? Most if not pretty close to all of us that underwent radiation suffered from a marked decrease in saliva (called dry mouth) and a marked decrease in our ability to taste. Those will most likely improve over the next 2 years as that is about the time that our recovery from this treatment takes. Those that had surgery to the tongue will comment on numbness related to perhaps nerve damage.

Also I'm not sure what you mean by "the doc tor says that this will fall of on its own"?

As you spend more time reading the posts on this site you will find a ton of helpful info especially the info that you will gather re his recovery.

It would also be helpful to people that respond to your posts if you could add some info about your dad and his cancer. See my Signature Line as an example of what I mean.

Welcome to this site. If you spend any amount of time here I'm sure you and your dad will be rewarded with really useful info.

Thank you so much David for your prompt reply....
Okay let me add some more details to it. Last year in march he was diagnosed with stage 2 Squamous Cell cancer but it was localized ...they did the surgery and put in a flap ... he was doing fine initially after the surgery.I personally feel that the doctors did not monitor him properly but that's my personal opinion..his surgery was done in april an but june he was feeling better.. even eating food soft/ liquid diet. in sept when he went back to see the doc they did biopsy again and it came positive for recurrence .... then they did 35 RTs and 6 Cetaxomab treatment ... he was in avery bad shape... it took good one and ahalf month to get better and all the skin conditions were fine ... saliva was dried up initially but was fine later.
he was done with radiation on nov26th to be precise ... and now its march 6th.. in start of jan they did a CT scan and it came out clear .... but end of jan he started having constant pain in his head and cheeks/ chin area... it would go up to 4/10 scale .... so when the doc checked him First they said the cancer is back .. then afetr 2 weeks they said its not back but part of his tongue (quarter size)is dead as in dead .. this part is some what to the side of the tongue near the middle part.
now they have never seen anything like this ... and let em add soemthing else to this ... this si all speculations based on visual observation bo test have been done by the doc s .. when we asked them to do the MRI they said that will be inconclusive ...so ...
we asked them what is the solution to this .. they are saying they don't want to cut that part because they don't want tp put him to sleep.....???? he is other wise in good shape interms of other body organs ... My father inlaw has beena very active man all his life .. and he is not a smoker .. he never touched alcohal in his life ..he has not used any kind of drugs whats so ever .....
and before all this radiation started they ahd put in peg tube as well.. ( its is still here ) since he cannot even drink water....
the only thing they have done is to give him hydromorphone ... and codene...( this is a good team of doctors ) its not that I don't trust them but I and my husband both wat to have some answers.. like what do they paln .. they don't say any thing .. their answer si the pain is due to the dead part of the tongue .. which will eventually fall off Yes thats exactly what they said .. and I need to know if there is any one out there who has seen or heard about such a side effect of radiation?
the second question is ... what are the side effects of hydomorphone .... he is having short term memory loss....and that upsetting for him n us ...
He lives with us .. I am from the part of world where we take care of our parents.. its very hard to see him in pain... we feel so helpless .. I am not tired believe me .. he has been such a loving father in law .. he the type of a person whom you want to run and help for he is such an independent person never .. never complaining of anything ... so easy to take care of... and I have been so blessed that mY kids are learning so much about life ... and have the love of there grand father.
I can't take away his pain but I am getting desperate to have some answers... or may be just to hear that we are not alone ....
Thank you so much...

Welcome to OCF! Take a deep breath....we will help you! Your posts are a bit hard to read, all running together like one very long sentence. That may be why you have not had many responses. Another reason is that this isnt something I have every heard of on this forum. Never has anyone said the doc is ok with a big chunk of their tongue just falling off. Thats nuts!!!!!

I am very very sorry your poor father is going thru this. Is he being seen at a cancer center? No matter what the answer to that is, get him to another one! I will post a link for you. He needs a whole team of top notch doctors acting together to discus his individual case. A visual exam and saying its ok to lose a large piece of his tongue isnt right!

Pain meds can definetly mess with a persons mind. He is taking something pretty strong and Im pretty sure its a narcotic. Some narcotics can cause some bizarre behavior side effects. Ask for something else...liquid of course. Your dad has a peg tube right? Make sure he is getting proper nutrition so he heals. He has been thru alot and its hard to bounce back sometimes. Ive had OC 3 times within 3 years and every surgery I have is harder and harder to recover from. So please keep an eye on his nutrition so he will recover quicker. Make sure he is getting alot of protein and 2500+ calories daily, 48+ oz water daily.

I hope you find a good qualified doctor and cancer center from the list. Make sure when you call tell them your dad is a 2x oral cancer patient and is having a problem. Tell them he needs to be seen right away as you fear it is a recurrence again.

Best of luck with everything!!!

http://www.oralcancerfoundation.org/resources/cancer_centers.htm
http://health.usnews.com/best-hospitals

Is it possible the Dr didn't say part of his tongue is dead? I think we all agree with what Christine has told you so listen to her. I lost tongue on the right side then the left and finally the tip of it took a walk too. It sure isn't dead tho or it wouldn't pain so much and continually. Dry mouth along with severe scar tissue and radiation burns can make people think funny things. Go for another opinion for him. Go to a CCC and do it soon.

Thank you all for your responses.... but I am telling you what the doctors have told us ... and that is part of his tongue is dead ( necrosis of tongue).
he is being looked after by a team of doctors.after I posted here we called his oncologist( the one dealing with surgery) and aske dhim his plan going forward... and it seems they have no specific plan but wait and see....
@ Christine .... you are right I do sound as if I have written one long sentence.... but i guess that would tell you my state of mind and heart.... I guess I am also excited that there are people out there who care enough to answer you.... thank you...
he is on iso source 1.5 .. which mean he is getting 2250 calories daily and 1.4 liters of water.
I'd have to check for specific gm of protein... I will call the nutritionist tomorrow and ask her for more details...
My understanding of getting a second opinion is that we 'd have to ask the doc to give us his medical record.. and we are afraid of offending the team ....like what if they are right n we'd have to come back to them and what if they don't take care of him properly... do you get what I am saying .... I am Canadian :)how should I aproach this ?

Saira,

I have worked for three different physicians (two I am currently employed by)for the past 16 years and I assure you, they have NEVER been offended when asked for records or asked for recommendations for a second opinion. If you are uncomfortable asking for this, you may request a copy of your records telling them you want a copy to keep for yourself. Then, you can take them to the doctor you will be seeing for a second opinion. I took some retinal scans today and had a patient ask me for a copy of the pictures to take to their family doctor. It is not an inappropriate request. Good luck and please don't worry about offending the doctor - any good doctor will not take offense. Our doctors actually encourage a second opinion if a patient feels apprehensive in their diagnosis or treatment plan. Hope this helps a little.

Yvonne

I agree - get a second opinion - necrotic tissue is not a good thing to have anywhere in your body and it's usually removed - he should not be in pain either - any form of morphine is strong- if it's not working get something else. It sounds like he was doing well and then something happened - likely the tongue issue - and then he stopped progressing. If the dr.s don't know what to do and have a wait and see attitude then push to see someone else. No dr. Should be upset with a second opinion, they should welcome it.

I'm sorry your father in law is suffering. Dead tissue can become gangrenous... It should be removed.

If it were in his position I would be freaking out at this point - I too had tongue cancer and had the surgery 4 weeks ago - I'm heading for radiation in a few weeks - I can eat and speak pretty well at this point - everyone is different and recovers differently but this seems to be taking a really long time. It's possible the tongue issue is related to the radiation. But regardless something should be done.

Don't be afraid of offending your dr. your father in laws health is far more important than someone elses ego. Get his records and go to your family physician explain the issue & ask for a referral to someone else. Best of luck. Hope everything works out!

Thank you every one for your support and encouragement... we will get second opinion for sure .. he has his appointment coming up on Thursday .. I will update you all .

Saira, I had necrotic tissue on my tongue post radiation and it showed up on the PET scan. My ENT surgicallyre moved it, becasue it did look like cancer. Biopsy said it was necrosis due to radiations. I had to go through HB O to heal that up. Ask about HBO.