Tongue SCC questions

NYCMike2010

I had a biopsy last July ('09) in the area of a painful sore that my surgeon called a chronic ulcer. The biopsy came back as papilloma vulgaris. He said vascular activity as a result of the surgical trauma at the site of the biopsy might cause the sore to heal.

I waited and the pain/sore eventually came back but eventually seemed to change appearance so I went for a biopsy again in late November ('10). This time the diagnosis was squamous cell carcinoma of the base/rear 2/3s of the left side of my tongue. PET/CT scan indicated no lymph nodes affected or metastasization but due to its size ends up a T3/N0/M0 so Stage 3.

My surgeon wants to use a robotic method to remove the tumor. He says that between 10-20% of my tongue will be removed, a separate operation will remove any “at risk” lymph nodes, and radiation should only be necessary IF the post-op pathology indicates a cancer presence.

I've been reading a lot of info from many sites including this one about likely treatments and likely after affects. I was wondering if anyone out there has had or knows anyone with a similar situation. I wanted to know, un-sugarcoated, if:
A feeding tube down my nose is the worst I’ll get short term post-op or maybe a gastric tube…
Radiation is more of a likelihood or as they say it is…
What I might expect longer term in my speech…
Has anyone heard of an insertion of radioactive wires to treat the tumor as a primary treatment?

I’m just looking for some more insight because this can get overwhelming sometimes.
Thanks!
Mike

shervon1960

scc
I had scc in 2009. I had surgery where they removed my tumor, but they did not take out any part of my tongue. I'm not sure about what stage I was in. I am over it now after extensive radiation and chemo. I had to have a feeding tube because I could not swallow or talk for about 8 months, I have been cancer free for about a year now. I have my voice back and alot of my taste. I won a $300.00 karaoke contest a couple of months ago and every body says my voice is alot stronger now,so don't get to discouraged.

DrMary

Feeding and radiation
Most doctors don't like to do NG tubes (the ones that go down your nose) for H&N cancer; it can cause sores in your soft palette, back of the tongue, back of the throat and in your esophagus - they'd rather keep that area clear. (However, your doctor might be comfortable doing it for a week or so if that is all you will need it for.) A G-tube really is more of a long-term investment, as it can take up to a week or so to recover and get adjusted (although many do so in as little as a day). If they think you'll be able to swallow liquids within a few days of the operation, you should be able to get by that way.

If they get the tongue tumor with a clear margin and if they find no affected lymph nodes (or affected lymph nodes in one area surrounded by clean lymph nodes) then there is no reason to do radiation. They won't know until they go after the primary tumor - so no one (including your doctors) can tell you how likely it is you'll have radiation. It sounds like they are being straight with you, however.

Doug's cancer was in his tonsils, so we have no experience with your last 2 questions. However, my own feeling about surgery vs radiation is that it's always better, if it can be removed cleanly, to cut a tumor out. The radioactive wires sound like the radioactive "seeds" they've used for prostate cancer - last I saw of the prostate cancer studies, it was no more effective than surgery and caused as many long term effects (like impotence, incontinence, etc.); was it a proposed treatment?

kingcole42005

Hi Mike,
Hi Mike, Welcome to these boards. I had a feeding tube down my nose right after surgery for about a week. It sucked but hopefully I can help you out a bit. Mine was sewn into the tissue in my nose and after awhile I kept catching it on things until the stitches ripped out, very, very painful. They needed to but a special kind of tape to hold it into place but some genius forgot it. Make sure it's taped!! Also I could not handle the contant drip into the line, made me nauseous so they had to feed me a can every two hours. The faster they pushed it the better it was for me. But your experience could be different, just tell them what you need. Also half of my tongue is numb so my speech is affected. I talk different and sometimes it bothers me, especially when some dumb family member thought it was funny to mimic me (so NOT funny) They learned pretty quickly that I wasnt' amused! Radiation to the mouth is rough, I've only had 13 treatments out of 33 and I've already got some pretty severe problems. Dry mouth, mucositis, swelling etc. I use all of the Biotene products, baking soda rinses, special floride tooth paste, magic mouth wash, stuff for thrush, and now on morphine. My taste has changed not completely gone yet, but I expect it will go. You may not have any problems, everyone is so different in their side effects. So good luck to you, and have a Merry Xmas. Shelly

abbimom

old patient
I had SCC of the tongue on the left side about 10 years ago. I was only 21 years when I was diagnosed. I had stage 4 and it spread to my lymphnodes in my neck. I had surgery to remove part of my tongue then radiation and chemo. My speech was not great and then I had an additional small surgery in my mouth after 1 year after treatments and that improved my speech a lot. But I have chronic dry mouth, my speech is a little different, I can eat but it is different then before. Now you will probably be a lot better off because there have been so many advances in the treatments to help limit the side effects. If you do have radiation go to a dentist first and take care of any problems with your teeth. Also ask your doctor for the therabite, it is a device to help opening your mouth wider. If you don't have radiation then you will not have many of these long term side effects. My best advice is to get a second opinion and stay positive and if you see a speech therapist listen to them and do the exercises they give you. I regret not doing that early on. good luck with everything. And if you need to talk you can email me at iloveev@hotmail.com. I know this is overwhelming but you will get through it and I honestly think I'm a better person now because I went through so much. Good luck and best wishes.
Linda
ps. if you get radiation I do recommend the g tube. I fought it for a while and just kept feeling horrible because I was dehydrated. After it was in I felt much better and a couple of months after treatment it came out. I hated when I had the feeding tube in my nose. Prefered the G tube.

NYCMike2010

shervon1960 said:

scc
I had scc in 2009. I had surgery where they removed my tumor, but they did not take out any part of my tongue. I'm not sure about what stage I was in. I am over it now after extensive radiation and chemo. I had to have a feeding tube because I could not swallow or talk for about 8 months, I have been cancer free for about a year now. I have my voice back and alot of my taste. I won a $300.00 karaoke contest a couple of months ago and every body says my voice is alot stronger now,so don't get to discouraged.

Well congratulations on the
Well congratulations on the voice strength and the karaoke victory! That's something I have to look forward to.

NYCMike2010

DrMary said:

Feeding and radiation
Most doctors don't like to do NG tubes (the ones that go down your nose) for H&N cancer; it can cause sores in your soft palette, back of the tongue, back of the throat and in your esophagus - they'd rather keep that area clear. (However, your doctor might be comfortable doing it for a week or so if that is all you will need it for.) A G-tube really is more of a long-term investment, as it can take up to a week or so to recover and get adjusted (although many do so in as little as a day). If they think you'll be able to swallow liquids within a few days of the operation, you should be able to get by that way.

If they get the tongue tumor with a clear margin and if they find no affected lymph nodes (or affected lymph nodes in one area surrounded by clean lymph nodes) then there is no reason to do radiation. They won't know until they go after the primary tumor - so no one (including your doctors) can tell you how likely it is you'll have radiation. It sounds like they are being straight with you, however.

Doug's cancer was in his tonsils, so we have no experience with your last 2 questions. However, my own feeling about surgery vs radiation is that it's always better, if it can be removed cleanly, to cut a tumor out. The radioactive wires sound like the radioactive "seeds" they've used for prostate cancer - last I saw of the prostate cancer studies, it was no more effective than surgery and caused as many long term effects (like impotence, incontinence, etc.); was it a proposed treatment?

Thanks DrMary,
No, the
Thanks DrMary,
No, the 'wires' or seeds if that's what they were meant to be weren't ever offered, they've just been brought up in several online posts and a few even mentioned how this was their ONLY form of tratment with chemo and no tonguw tissue was removed... It seemed to good to be true so i figured I'd ask - who knows what exact type of cancer they had anyway.

I would normally agree with you 100% phylosophically on the efficacy of removing every last bit of the damn tumor. But to be honest I'm scared of the side effects. I've been told that swallowing may become an issue. and as far as speech is concerned I've heard anywhere from 'you'll notice no difference' to 'you'll have permanent speech changes'. I realise the priority is expunging the tumor but I will need to live with these changes for a long time.
Thanks again so much for your response. Is Doug doing well now?
Mike

donna340

Understand
I'm going thru this is right now. I had SCC about 7 years ago the doctors were able to remove with just surgery alone. (PET & MRI came back clean) I have had spots come and go and have had many biopsies done. I just had one done on 11/18/2010 and it came back as SCC. They did remove all of it during the biopsy. I spoke with a few different doctors and they felt my best option now is the wait and see. I have a check up every six weeks with my ENT.

They did do a bunch of test on the biopsies and all came back negative. (HPV & AutoImmune)
I have about a quarter of my tongue removed and it not to bad. I ache everyday but liveable (no pain meds) I do get dry mouth but dont know why never had chemo or rads. Always have a bad taste in mouth (metal or bitter)I think its from the stuff they use when i have the biopsies done. Tongue turns completely white for about 2 to 4 weeks.
The stitches last for a few weeks. Speech is not to bad, have some trouble with some words. You can really tell when I ge tired.

I cannot complain life is pretty good and I feel very lucky and blessed!
When I having a bad day and need to event I log on and express away and everyone here has had a big heart and wonderful ears with really great advise.

Sending lots of prayers and wishing you the best on the treatment plan that works for you!

NYCMike2010

kingcole42005 said:

Hi Mike,
Hi Mike, Welcome to these boards. I had a feeding tube down my nose right after surgery for about a week. It sucked but hopefully I can help you out a bit. Mine was sewn into the tissue in my nose and after awhile I kept catching it on things until the stitches ripped out, very, very painful. They needed to but a special kind of tape to hold it into place but some genius forgot it. Make sure it's taped!! Also I could not handle the contant drip into the line, made me nauseous so they had to feed me a can every two hours. The faster they pushed it the better it was for me. But your experience could be different, just tell them what you need. Also half of my tongue is numb so my speech is affected. I talk different and sometimes it bothers me, especially when some dumb family member thought it was funny to mimic me (so NOT funny) They learned pretty quickly that I wasnt' amused! Radiation to the mouth is rough, I've only had 13 treatments out of 33 and I've already got some pretty severe problems. Dry mouth, mucositis, swelling etc. I use all of the Biotene products, baking soda rinses, special floride tooth paste, magic mouth wash, stuff for thrush, and now on morphine. My taste has changed not completely gone yet, but I expect it will go. You may not have any problems, everyone is so different in their side effects. So good luck to you, and have a Merry Xmas. Shelly

Ok, so make sure it's taped
Ok, so make sure it's taped - got it. I've been told that the nose tube should be all I need for a few days then as soon as I can swallow, I'll be allowed home, which I won't fight.
When you mentione the constant drip in your line, are you refering to the drip they always show on tv as in the fluid audibly dripping into your IV? You can actually hear it? if so, I could image being driven mad by that as well....

I'll not the radiation effects and se if it comes to that.

I got confirmation just today that the surgery is set for next Wednesday Dec 22nd so my family has graciously moved xmas festivities to this saturday since I may be in the hospital for the 25th:(
Thanks for the response Shelly and you have a great holiday as well.
Mike

NYCMike2010

abbimom said:

old patient
I had SCC of the tongue on the left side about 10 years ago. I was only 21 years when I was diagnosed. I had stage 4 and it spread to my lymphnodes in my neck. I had surgery to remove part of my tongue then radiation and chemo. My speech was not great and then I had an additional small surgery in my mouth after 1 year after treatments and that improved my speech a lot. But I have chronic dry mouth, my speech is a little different, I can eat but it is different then before. Now you will probably be a lot better off because there have been so many advances in the treatments to help limit the side effects. If you do have radiation go to a dentist first and take care of any problems with your teeth. Also ask your doctor for the therabite, it is a device to help opening your mouth wider. If you don't have radiation then you will not have many of these long term side effects. My best advice is to get a second opinion and stay positive and if you see a speech therapist listen to them and do the exercises they give you. I regret not doing that early on. good luck with everything. And if you need to talk you can email me at iloveev@hotmail.com. I know this is overwhelming but you will get through it and I honestly think I'm a better person now because I went through so much. Good luck and best wishes.
Linda
ps. if you get radiation I do recommend the g tube. I fought it for a while and just kept feeling horrible because I was dehydrated. After it was in I felt much better and a couple of months after treatment it came out. I hated when I had the feeding tube in my nose. Prefered the G tube.

Hi Abbi.
I know it was
Hi Abbi.
I know it was almost 10 years ago but may I ask, and do you remember, what kind of surgery you had a year later that made your speech better? It wasn't the radial forearm freeflap procedure, was it?

My doctor at Sloan Kettering is confident with the use of the robot in excising all the tumor with little to no excess good tissue removal but keeping clean margins so hopefully you're right and the technology will help me.

Therabite? Will I need this after surgery for any particular reason? Is that only for after radiation? does your mouth not open as wide after several doses of rad treatment?
Yes, my Dr is the director of speech rehab at the hospital so I pan on following all therapy exersizes they throw my way.

I'll keep the g-tube in mind - are you recommending it because of the queasyness you feel after rad treatment or is it just hard to swallow and eat?
Thanks!
Mike

NYCMike2010

donna340 said:

Understand
I'm going thru this is right now. I had SCC about 7 years ago the doctors were able to remove with just surgery alone. (PET & MRI came back clean) I have had spots come and go and have had many biopsies done. I just had one done on 11/18/2010 and it came back as SCC. They did remove all of it during the biopsy. I spoke with a few different doctors and they felt my best option now is the wait and see. I have a check up every six weeks with my ENT.

They did do a bunch of test on the biopsies and all came back negative. (HPV & AutoImmune)
I have about a quarter of my tongue removed and it not to bad. I ache everyday but liveable (no pain meds) I do get dry mouth but dont know why never had chemo or rads. Always have a bad taste in mouth (metal or bitter)I think its from the stuff they use when i have the biopsies done. Tongue turns completely white for about 2 to 4 weeks.
The stitches last for a few weeks. Speech is not to bad, have some trouble with some words. You can really tell when I ge tired.

I cannot complain life is pretty good and I feel very lucky and blessed!
When I having a bad day and need to event I log on and express away and everyone here has had a big heart and wonderful ears with really great advise.

Sending lots of prayers and wishing you the best on the treatment plan that works for you!

Hi Donna.
I'm sorry it came
Hi Donna.
I'm sorry it came back on you. Did they do the HPV and AutoImmune tests because they can lead to eventual cancer? I heard about the link between any HPV strain and cancer and not only for cervical cancer now...
The info on the speech you mention is very heplful! They are telling me that they may resect between 10-25% of my tongue so we may have similar results.
I just signed up this morning and already I'm overwhelmed with helpful responses I've gotten so you're right, there's many good people out here.
Thank you as well for your info and I wish you good results on your ENT visits.
Mike

kingcole42005

NYCMike2010 said:

Ok, so make sure it's taped
Ok, so make sure it's taped - got it. I've been told that the nose tube should be all I need for a few days then as soon as I can swallow, I'll be allowed home, which I won't fight.
When you mentione the constant drip in your line, are you refering to the drip they always show on tv as in the fluid audibly dripping into your IV? You can actually hear it? if so, I could image being driven mad by that as well....

I'll not the radiation effects and se if it comes to that.

I got confirmation just today that the surgery is set for next Wednesday Dec 22nd so my family has graciously moved xmas festivities to this saturday since I may be in the hospital for the 25th:(
Thanks for the response Shelly and you have a great holiday as well.
Mike

They use a special machine for the food
They use a special machine for the food. They pour the food into these bags then hook it up to the machine. The machine is then calibrated to send food through the tube every few minutes. I didn't like that, it made me nauseous, so they pushed the food through my feeding tube every two hours manually. One nurse was pissed because I was wasting her precious time, but too bad. I was the patient and I couldn't help it made me feel sick. This is not the same as the IV this is for food only. Of course I had an IV and a drainage tube for my neck dissection. Tubes coming out of everywhere! I was in the hospital 10 days, but my surgery was different than yours and the story is quite involved so I won't take up your time. You are going to be fine, enjoy your early xmas and eat like a little piggy right now! Eat everything you love to eat and enjoy every darn bite! Happy Holidays,Shelly

NYCMike2010

kingcole42005 said:

They use a special machine for the food
They use a special machine for the food. They pour the food into these bags then hook it up to the machine. The machine is then calibrated to send food through the tube every few minutes. I didn't like that, it made me nauseous, so they pushed the food through my feeding tube every two hours manually. One nurse was pissed because I was wasting her precious time, but too bad. I was the patient and I couldn't help it made me feel sick. This is not the same as the IV this is for food only. Of course I had an IV and a drainage tube for my neck dissection. Tubes coming out of everywhere! I was in the hospital 10 days, but my surgery was different than yours and the story is quite involved so I won't take up your time. You are going to be fine, enjoy your early xmas and eat like a little piggy right now! Eat everything you love to eat and enjoy every darn bite! Happy Holidays,Shelly

food machine
Ok understood - I thought it was something IV related. I hope I don't have the same aversion to it. I'll be going back for a separate procedure to do the neck dissection for the lymph node removal so I'm sure I'll have the drainage tubes in as well.
Thanks for the heads up - It's 'great' to know about this stuff so I or my family aren't scared to tears the first time I'm seen:)
I will eat like a 6' tall, 220 lb pig fat pig - I promise.
Be well.
Mike

DrMary

NYCMike2010 said:

Thanks DrMary,
No, the
Thanks DrMary,
No, the 'wires' or seeds if that's what they were meant to be weren't ever offered, they've just been brought up in several online posts and a few even mentioned how this was their ONLY form of tratment with chemo and no tonguw tissue was removed... It seemed to good to be true so i figured I'd ask - who knows what exact type of cancer they had anyway.

I would normally agree with you 100% phylosophically on the efficacy of removing every last bit of the damn tumor. But to be honest I'm scared of the side effects. I've been told that swallowing may become an issue. and as far as speech is concerned I've heard anywhere from 'you'll notice no difference' to 'you'll have permanent speech changes'. I realise the priority is expunging the tumor but I will need to live with these changes for a long time.
Thanks again so much for your response. Is Doug doing well now?
Mike

Swallowing and Speech Issues
It is very hard for them to predict up front how much your swallowing and speech will be affected. Some of it is the "we won't know until we pop the hood" issue - it's hard to them to tell exactly which nerves and muscles are going to have to get cut until they operate and find out. Some of it is the "your mileage may vary" issue - some folks regrow nerves and muscles better than others and some learn to work around missing tissue better than others.

Doug is a good example of mileage varying. On the one hand, he got side effects they had said would be unlikely - both blood clots (leg and lungs) and low WBC. He also got uncontrollable nausea after the second chemo. He also got radiation-induced nausea (from hitting the brain stem). He also had an allergic reaction to the IV feeding (PPN) they tried instead of just giving his stomach a rest with IV fluids. Lots of head shaking.

On the other hand, less than 2 weeks post-treatment and he is eating semi-solid food again (this, despite the diagnosis 1 month earlier by a speech therapist that he was aspirating and would not be able to swallow normally for months). We have an odd theory that all the throwing up he did in the final weeks acted like several small dilations - his throat did not seem to close up the way others' have, even though he had heavy radiation there.

None of the above were predicted - they told us the "average" experience and then suggested we prepare for the worst. I'd suggest the same for you - you could have a clean removal and no lasting effect on your speech/swallowing or you could end up needing radiation on top of the surgery, need a g-tube, need intensive speech therapy to be understandable and have trouble swallowing for many months. Hope for some place in between but prepare for the worst, so you are ready to work your way back to "normal" either way.

abbimom

NYCMike2010 said:

Hi Abbi.
I know it was
Hi Abbi.
I know it was almost 10 years ago but may I ask, and do you remember, what kind of surgery you had a year later that made your speech better? It wasn't the radial forearm freeflap procedure, was it?

My doctor at Sloan Kettering is confident with the use of the robot in excising all the tumor with little to no excess good tissue removal but keeping clean margins so hopefully you're right and the technology will help me.

Therabite? Will I need this after surgery for any particular reason? Is that only for after radiation? does your mouth not open as wide after several doses of rad treatment?
Yes, my Dr is the director of speech rehab at the hospital so I pan on following all therapy exersizes they throw my way.

I'll keep the g-tube in mind - are you recommending it because of the queasyness you feel after rad treatment or is it just hard to swallow and eat?
Thanks!
Mike

hey mike
I'm not sure what the surgery was called but they took skin from behind my lower lip and placed it somewhere under my tongue to help with the mobility. Sorry I don't have more specifics.
The therabite you would probably only need after radiation. The radiation causes a lot of long term side effects but like I said before treatments are more advanced now. But one problem is that after radiation I had a hard time opening my mouth wide. The therabite helps stretch it. I needed the g tube because during radiation my mouth and throat hurt to bad to swallow much so that was why I had it.
Also if you have radiation talk to a dentist first that is so important. You must take extra good care of your teeth after radiation. I don't mean to scare you but I wish I had this website when I was first diagnosed.
I'm serious if you ever need to talk you can always email me iloveev@hotmail.com. Good luck and that is great that your doctor is the head of Speech that is a big plus!
Good luck.
Oh I went back to college 2 months after my last treatment. You will get through it and it sounds like you have excellent care.
I just read that you are also getting a neck dissection. I did too. My face swelled pretty big from that but it goes down.
Best wishes,
Linda