Don't know what to do anymore

Tonita

Hello everyone!  So, I had SCC tumor removed from my tongue March 2016.  Overall, I'm very lucky.  Clean margines, 47 lymph nodes removed all clear.  Very lucky indeed as far as that goes.

The problem is that I have been in a state of discomfort and pain with no relief ever.  My primary care doctor does his best to help me with different medications to no avail.  The cancer doctors (surgeons) are no help whatsoever.  I suppose there is no help.  The removal of the tumor and the way they put my tongue back together has left it deformed and misaligned which causes a great deal of pain and discomfort in the way of inflammation.  I'm not supposed to take NSAIDS because of issues with stomach bleeds so Tylenol is recommeneded and it doesn't do much.

Have any of you been having the same issues?  What do you do?  Has your doctor been any help?

wbcgaruss

My Thoughts---

Maybe get an opinion or two from other surgeons that specializes in H & N if the ones you have dealt with can’t help you. Maybe they can’t either but at least you will know and be sure. Possibly they could alter your tongue a bit or a muscle is tight that needs released. As far as dealing with pain your family doc or better yet your main cancer doc could give you some stronger meds like maybe Percocet or hydrocodone or something stronger than Tylenol if it just isn’t giving you relief. Take Care-God Bless

katlou

Not sure if this will help

Hi Tonita

I had a stage 1 SCC on the underside of my tongue removed in Nov 2017 with a wide resection done in Feb 2018.  With the wide resection they removed a large area and went pretty deep to be sure the margins around the cancer were large enough.  They stitched it all back together and I ended up with a piece of skin hanging from the side of my tongue that I bit all the time when eating and I also have a tightness and pulling sensation under that side of my tongue.  I don't experience any pain with this thankfully.  

I decided to go and see another ENT a couple of months after this surgery who specializes in reconstructive surgery about the skin on the side of the tongue and he told me that he would need to open the surgical area to remove this skin (rather than just cut it off) and take a flap of skin from another area of my body to attach to the underside of the tongue to close it up.  This would probably also have alleviated the tightness I was feeling based on how he was describing the procedure.  He did tell me that I would have numbness where this skin flap was going to go so I would be trading one thing for another.   I thought about it for a couple of months and in the end opted to not have it done because the skin at the side of my tongue actually decreased in size over the next couple of months and is no longer in the way of my teeth and I was not experiencing pain.  I do still have the tightness and pulling sensation but I have gotten used to it. 

Anyway,  I am with wbcgaruss on this in that maybe another ENT could give you another opinion and figure out why you are having pain and maybe correct it.  I know what I experienced isn't what you are experiencing but I really felt that this ENT who did reconstructive surgery was going to be able to help me if my situation hadn't corrected itself to the point where I could tolerate it.

Tonita

Thanks guys.  I've talked to

Thanks guys.  I've talked to the surgeon at Yale who did the surgery, and I moved to New Hampshire and see two surgeons here, a plastic surgeon all who share the sam opinion.  It is what it is.

Even if something could be done surgically, do I want to go through all that again?  I don't know.

 

wbcgaruss

Well Tonita

You are in a tough place dealing with pain all the time. It can wear you down and it sure gets old. You've certainly done your due diligence in seeking out surgeons and it seems they all say the same thing "it is what it is and we can't really see a way to change it" (your condition). So it seems you have to decide do you still want to seek out other surgeons or not. And in the meantime get with someone who does pain management. There must be other meds you can take such as aspirin or in my case, I take the liquid aspirin you get OTC at the drug store. Or tablets but depending how big they are I crush them and take them with apple sauce. How about oxycodone I have some here at home I take occasionally but it is pretty strong and I am guessing you may be able to control your pain maybe with 1/2 tablet maybe. Hydrocone is another so I guess my point being get with a pain management specialist if this is to be your lot in life now. Control it if you can as it will make you feel so much better. and in the meantime maybe search for another surgeon. How about a speech therapist. I will be getting swallowing exercises when this Covid-19 thing subsides to help me swallow as good as possible out at the health campus maybe they could help you with some type of oral or neck exercises. Don't give up because the next person you talk to about this may have an answer or give you a lead for a solution. We feel for you and I wish I could help my thoughts are with you- best wishes-Take Care-God Bless

Check this lady's story---https://www.mdanderson.org/publications/cancerwise/squamous-cell-carcinoma-oral-cancer-survivor-half-of-my-tongue-is-gone--but-i-couldn-t-be-happier.h00-159302256.html

HobbsDoggy

Pain Management

My sister-in-law suffers from cronic pain due to cancer treatment from years ago.  It comes and goes.  She found a doctor that does work with her and found some medications, non adictive, that help.  Its been a long struggle.  The only hope I can offer is that beteen the doctor that helps and her adjusting to the pain, more or less, she lives a fairly normal life.  Not that she does not struggle, she does.  She is still take trips, work around the house and do some hiking and other outdoor activites so there is hope.

I am finding after 9 years out I am starting to get some pain again.  Just part of the journey, not a part we like that is for sure.  We cope and we reach out for help.

Tonita

wbcgaruss said:

Well Tonita

You are in a tough place dealing with pain all the time. It can wear you down and it sure gets old. You've certainly done your due diligence in seeking out surgeons and it seems they all say the same thing "it is what it is and we can't really see a way to change it" (your condition). So it seems you have to decide do you still want to seek out other surgeons or not. And in the meantime get with someone who does pain management. There must be other meds you can take such as aspirin or in my case, I take the liquid aspirin you get OTC at the drug store. Or tablets but depending how big they are I crush them and take them with apple sauce. How about oxycodone I have some here at home I take occasionally but it is pretty strong and I am guessing you may be able to control your pain maybe with 1/2 tablet maybe. Hydrocone is another so I guess my point being get with a pain management specialist if this is to be your lot in life now. Control it if you can as it will make you feel so much better. and in the meantime maybe search for another surgeon. How about a speech therapist. I will be getting swallowing exercises when this Covid-19 thing subsides to help me swallow as good as possible out at the health campus maybe they could help you with some type of oral or neck exercises. Don't give up because the next person you talk to about this may have an answer or give you a lead for a solution. We feel for you and I wish I could help my thoughts are with you- best wishes-Take Care-God Bless

Check this lady's story---https://www.mdanderson.org/publications/cancerwise/squamous-cell-carcinoma-oral-cancer-survivor-half-of-my-tongue-is-gone--but-i-couldn-t-be-happier.h00-159302256.html

Thanks for your private

Thanks for your private message.  I've done speech therapy.  I can't take aspirin or other anti-inflammatories because I've had bleeding issues with my stomach.  Serious pain meds maybe but here in NH are tough to get.  I mean, the reason for my pain is inflammation because my tongue is deformed.  As simple as that.  I don't even know if they can surgically fix this.  I don't think he gave much thought to how he sutured this tongue back together...My primary care doctor is the only one doing his best to help treat my pain.

Tonita

HobbsDoggy said:

Pain Management

My sister-in-law suffers from cronic pain due to cancer treatment from years ago.  It comes and goes.  She found a doctor that does work with her and found some medications, non adictive, that help.  Its been a long struggle.  The only hope I can offer is that beteen the doctor that helps and her adjusting to the pain, more or less, she lives a fairly normal life.  Not that she does not struggle, she does.  She is still take trips, work around the house and do some hiking and other outdoor activites so there is hope.

I am finding after 9 years out I am starting to get some pain again.  Just part of the journey, not a part we like that is for sure.  We cope and we reach out for help.

My pain is relentless and

My pain is relentless and constant.  Feels like a burnt tongue only all the time...

corleone

Tonita said:

My pain is relentless and

My pain is relentless and constant.  Feels like a burnt tongue only all the time...

Have you tried Gabapentin?

Have you tried Gabapentin? Used for neuropathy, and "burning mouth syndrome" among other things.

tommyodavey

Tonita said:

My pain is relentless and

My pain is relentless and constant.  Feels like a burnt tongue only all the time...

Pain Control

No one should be made to suffer because the DEA clamped down on doctors and addicts.  Your doctor should refer you to a pain management clinic where you can recieve whatever pain meds that will work.  It just makes my blood boil that cancer patients suffer needlessly.  My radiation oncologist handled my pain meds with no problem giving me the strong stuff.  Who else is it for if not for pain patients?

Sorry you have to go through all this.  We must all be our own advocate.

HobbsDoggy

Agee About No Pain

Understand why the DEA got rid of pain pill mills, but that is no reason that cancer surviors should be in pain.  There are legitimate pain clinics that can help.

Logan51

Pain

My Chemo Dr. handled my pain/discomfort problems w/liquid Morphine and Hydrocodone back in 2009. Only did the Morph during the worst 4 weeks because I did not like what it did to me, and the Hydro did a good enough job.

I still take Hydro for my L 2-5 Spine problem. An addict? Get a refill of 30 pills an average of every 9-11 weeks, taking 1/3-tab/day. And know of another retiree who does a similar amount. Hydro blocks the pain signal to the brain= fact, and is not a big deal if taken correctly. As for the goofy anti-Opiod pill fanatics who don't have to live in pain- there is no reason to stop Doctors from prescribing what they deem to be appropriate, while monitoring the usage for signs of abuse. In my County last year they had 21 Opiod deaths- 18 were Heroin overdoses, and thus nothing to do with Doctor prescribed medicine.

As for me- look at my Expressions page to see a picture of my Spine's Lumbar area. The X-ray was taken at the Spinal Surgeon's office, and I was advised a L 2-4 fusion Op. would be the only thing he could do, and it "might" help. Not having a Caregiver, I opted for my way: frequent heating pad use, I quit my job so I could be in complete control of my physical activity, and the forestate Hydro/day.

So, find a Dr. who is able to realize the facts of your pain, Tonita. There has to be a competent Dr. somewhere in your area.