Squamous cell of the tongue

I just had my surgery May 3, 2021, took about 3/8 back of my tounge, lymph nodes, neck dissection, had a peg put in, couldn't swallow , can't speak, this stuff is something else, no one told me it woud be like this, very depresssing for sure. Started speech therapy, but its going to be a while. I know how you feel.

Sorry, you have to be here but you will find help and support here it is a good place to be. To start off try to stay as calm with this as you can. I know it’s tough and we all panic a bit when we know we have cancer as it is the unknown future. You are not going to die and you have to dig your heels in and say to yourself I am going to get treatment and I am going to beat this thing. There are many people right here on this forum that have won the battle with this beast and you will too. Talk to your chemo and rad doc or do you have a nurse navigator that can advocate for you. Ask them to get treatment started. Push them to get treatment started. Have they given you an idea of how long it normally takes social security to approve this type of treatment? I would also recommend getting hold of the American Cancer Society, which I believe may be able to help in your situation. Here is their resources page  https://www.cancer.org/treatment/support-programs-and-services/resource-search.html  just scroll down and look through the support options. There is a cancer helpline to call at the top left of page 1-800-227-2345 and right beside it is a "Contact Us" you can click on and you can live chat with a representative. Work with your docs and reach out and I am sure you can get the ball rolling on this somehow. Hopefully, some other folks on the forum can chip in on this and provide some good ideas and input, and maybe there is someone out there that has been in the same or similar situation you are in and can let us know what they did. Please keep us posted on your situation and your progress.-Wishing You The Best-Take Care-God Bless-Russ

Duggie88 said:

Patty

I had squamous cell (HPV) at the base of my tongue back in 2009. They removed part of the base of my tongue, epiglottis, uvula, and aa few lymph nodes. My surgeon was up front with me and told me what to expect including that I was going to go through a couple of months of hell. I couldn't wait for a full neck disection and really wasn't scared because I wanted the cancer out. Naturally with no epiglottis I had to got to speach therapy to learn how to swallow again. And after 30 radiation treatments they foumd a special physical therapist in my area who was trained in lymphedema of the neck. She also took care of an issue with my left arm were I couldn't lift a gallon of milk becaue of the sugeon cutting through the neck muscles. Talk to your doctors about physical therapy. It is 11 years and a few months since I finished treatment and I consider myself abinormal I eat whatever I want at a slow pace and my voice did get better than it was after treatment just higher pitched. I use to have a low basey voice  kinda sorta like Barry White. I was a Vice President of the Teamsters so my voice was one of my tools against employers. Before cancer when I pissed them off and they would start to yell I could always slam my fist on the table and yell back loader then they could. Not any more. My point is we go through changes that we have to adapt to, we don't like it, but in order to move forward  we don't have a choice. Life has changed but life is good.

StayPositiveStayStrong

Enjoy your day.............I do............every one of them

Jeff 

Some of the same after treatment foibles. I too can eat almost anything albeit differently and definitely more slowly. I would say my wife is done eating and I am about halfway done. I definitely have to chew my food more to be sure it will not cause problems going down and sip a soda or some other liquids add-in to help with less saliva. But I am just thankful The Good Lord has gotten me to where I am at and that I can still eat. Flavors are definitely not the same and the best tasting to make anymore is sweet or salty. Luckily my salt levels are low in my system so I can add a lot of salt without a problem. And like you, my voice is different due to damaged vocal cords from my last hospital stay with complications. And like you, I enjoy every day and if I can help others in some small way I am glad to do it. And I agree wholeheartedly with your statement "we go through changes that we have to adapt to, we don't like it, but in order to move forward, we don't have a choice. Life has changed but life is good." Jeff we all went through a lot and I always appreciated your down to earth Input thanks a lot-Take Care-God Bless-Russ

Duggie88 said:

Russ

I consider myself lucky because I feel I weathered the storm better then some folks who went through the same treatment as I did. I chalk thet up to the team of doctors that treated me. Earlier this year when my surgeon scoped me they didn't use any numbing spray and I thought to myself this isn't going to be good. The doctor came in  and when it came time it wasn't any different then when I did get sprayed. I told the nurse afterwards that wasn't bad at all. She turned and said that's because you had somebody that knows what he is doing. I've always tried to find humor in just about everything, when it came to cancer I used it to hide my fear of the unknown. I use to frequent this site a lot more but didn't like the fact of shedding a tear for someone I never met losing their battle. A lot of the regulars back then have stopped visiting the site. Not sure why and never asked any that I keep in contact with. But like you, I want to see people beat their battle with cancer so I will occasionally stop by to read posts and if I can add something I will. I never really thought I could hate something as much as I do cancer.

 

Enjoy the day

Jeff

It has changed my entire life neck and head with mouth and larynx and throat I have been in the good fight since August 2020 I have incredible doctors I am so blessed and have had incredible medical treatment. My family has been supportive and loving and my life feels like it is crumbling around me.  I am crawling on broken glass at this point to try and stay brave, motivated, and mellow but I crawl some days are good some are bad but I hate cancer every single one of them. 

CarolynSuzanne said:

Post radiation-had all my teeth removed. New enlarged lymph

Hi all..I'm now 5 years post radiation. my taste is back at about 80%, but the tooth decay from lack of saliva was extremely painful..finally had all teeth removed Dec. and no more tooth pain...albeit other denture challenges. My throat is still sore, my neck is still sore with pain radiating to my head- but Turmeric seems to help if I take it daily. i live on xylamelts, although my saliva increases when I wear my dentures.  Now, the lymph node on the other side of my neck is extremely swollen..I go to the doctor today and I'm sure will be on pins and needles until all testing is complete. HPV tumors on back of tongue previously.

this is the first time in 5 years I have tried a "support group." I appreciate everyone here and wish the best for everyone! 

 

To the forum.
There are all good folks here and I am sure you will feel at home.
I can see you have been through the war and have your share of the battle scars you are carrying post-treatment.
I am glad for you that you are adapting to the challenges of post-treatment life such as some lessening of taste, tooth loss and getting used to dentures, and lack of saliva.
I too find the Xylimelts a great help.
I am sorry you have some swelling going on but be as calm as possible and we certainly hope and pray it's not cancer darkening your door again.
I know how you feel every time we get pain or swelling especially around the H&N area we are on edge.
It's understandable.
It's been stated on here many times "It's Not Cancer Till They Say It's Cancer" albeit proven by proper testing.
Wishing You The Best-Take Care-God Bless-Russ

Edel said:

Throat Cancer; after treatment

Hi All;

I was diagnosed with negative HPV, unknown primary, stage IV throat cancer this year.  It was  an incredible surprise! I have completed a rough road of treatment 35 Radiations, 5 Chemo Cisplatin in 7 weeks. And then 2 weeks being hospitalized after treatment due to malnutrion and dehydration, in which they surgically installed a g-tube.   It has been over two months since my last treatment, I will know in September how my cancer resonded to the treatement.  Right now, I deal everyday with no desire to eat. I have lost 46lbs. which feels good.. lol.. even though now any more pounds off would really be bothersome for my health.  

So, I am reading all these posts, and feeling a little down, as I miss eating and having energy to get things done.  I have very serious fatigue all day, sleep poorly, and severe dry mouth still.  I hope that things will improve, everyday I hope to get some spit in my mouth or be able to eat something without if tasting like sand or dirt.  My doctors tell me that eventally taste will come back, but at times right now that seems unlikely.  I spend a lot of time reminding myself of how grateful I am to be alive.  Funny, how when you take food away you realize what a very simple pleasure it is to eat.  It sounds like most people dont ever really get their taste back 100%, that is horrible to imagine.  I love to cook and share meals with family and friends.  Any one have success in getting their taste back?  How long did it take for salvia to start producing? Any suggestions for improving the healing on the taste buds? I have tried all the mouth washes, salt rinses, lemons, etc.. nothing has really changed in two months.  I wake up all night with severe dry mouth.. got any suggestions?

Anyway, I hope you are all living your best life, and appreciate having a chance to chat with other throat cancer people.  I hope the best for all you.  

Oh, does anyone else have their hair falling out?  I have been shedding hair for months and even have few bald spots in the back from radiation.  Does your hair ever stop falling out? Do you know of any tricks to help slow it down?

Looking forward to chatting!

E

 

Edel, 

You have gone thru alot, but you should be soon passing the "Cooking Stage" where all the treatments continue to work on us after we complete them. Saliva is slow to come to some, and quicker for others, each of us recover from treatments at different speeds and levels of back to normal. Energy level may take a year according to my Radiation Oncologist. Mine was a bit longer. Please keep an eye on your Thyroid levels "TSH" when getting bloodwork done also Iron level. 

Try to eat some softer foods with nutrition and that may help with getting some energy back. If you can, set some goals of any sort of activity for yourself, even a walk around the block. Try to measure your recovery in Weeks not Days as we can get disappointed when we don't see improvement right away. 

I did use Biotene Dry Mouth Wash before bed and it helped with my dry mouth during the night. I am currently using Mouth Kote, it also does a good job for me.

Have a nice weekend, My Best to You and Everyone Here

CarolynSuzanne said:

Post radiation-had all my teeth removed. New enlarged lymph

Hi all..I'm now 5 years post radiation. my taste is back at about 80%, but the tooth decay from lack of saliva was extremely painful..finally had all teeth removed Dec. and no more tooth pain...albeit other denture challenges. My throat is still sore, my neck is still sore with pain radiating to my head- but Turmeric seems to help if I take it daily. i live on xylamelts, although my saliva increases when I wear my dentures.  Now, the lymph node on the other side of my neck is extremely swollen..I go to the doctor today and I'm sure will be on pins and needles until all testing is complete. HPV tumors on back of tongue previously.

this is the first time in 5 years I have tried a "support group." I appreciate everyone here and wish the best for everyone! 

 

Hi Carolyn,

I wanted to ask you about the Turmeric.  I am 3 years & 4 months out from Radiation. 

You can read my profile by clicking on my user name in the blue box... I am not inclined to type it all here today, as I'm in the hospital and for s some reason my vision is still very blurry. Forgive any typos !!

My cancer has recurred 5 times, even a New Primary u st 9 months after my radiation treatments ended.

Anyway, I am writing to ask about the Turmeric .  Do you take it for a specific pain, or inflammation?  Does it really work?

I am not allowed any medicines by mouth ( because I aspirate) Will the orange Turmeric powder  stain or build up residue in my G Tube tubing?

I have heard its used for Arthritic issues. Please let me know what you use it for, and the dosage and brand name.  Does it interact with other meds?

Thanks!

Crystal

wbcgaruss said:

Edel Welcome

To the forum the place we show up at but didn't really want to.
Marine is right you are early out of treatment and the radiation is probably not quite done having its effects on you.
Please be patient it sounds like you are feeling the normal effects of treatment.
I remember all you are talking about and many of us have had it either severely or to some lesser degree.
I am referring to things like fatigue and being tired.
I had a period where I had to push myself to do anything.
If my A%@ hit a chair I was sleeping so I made sure to get the little things done before I sat down again.
Do your best to stay positive and take only one day at a time and get through it.
We have all had and still have to some degree or the other dry mouth.
Try getting some Xylimelts they work pretty well and sip water or if you can chew sugarless gum with Xylitol in it
as mostly the main ingredient and you can tell that by Xylitol being the first, second ingredient mentioned.
Trident gum is a good one if available in your area.
Also, keep in mind that this recovery is a very slow process measured in weeks and months, not days and weeks like a cold or flu.
Please be patient and soon you will be months out of treatment and improving.
Just to give you an idea My first cancer is exactly what you had but a bit more chemo.
Just before the start of treatment in late 2012 the radiation nurse sat me down and explained my treatment and said
"You might as well figure a year of your life till you get this treatment in and recover"
She was pretty much on as till I got to the point of saying I feel pretty good it probably was a year.
Your mileage may vary it may be less, it may be more as each case and each person is different.
Be happy, be patient, you are on the good side now they killed the cancer and now the treatment recovery and you're good to go.
I can't stress enough this is a slow process but you will get there I too was like you thinking am I ever going to recover but it comes along.
Hang in there and one day you will turn a corner and say to yourself "Ya know I feel pretty decent today, got some energy not doing too bad".
Also, check out the Superthread at the top of the page lots of info in there and you may find some help and direction in there.
Some of the links don't work but most do.
That's all, for now, remember to be patient and we are here to answer questions and provide any support we can to try to make it a little easier for the next guy/gal.
Wishing You The Best-Take Care-God Bless-Russ

Good day Russ;

What an incredible response filled with kind words and hope.  Thank you!

I really appreciate your words of experience. I think the hardest part is being patient, I have always been very active and on the go, It is torture to be in slow mode now.  

I will keep pursuing strength and hope, and keep everyone in my prayers for healthy recovery.  

Take care and have a great weekend.  Thanks again!