Hello, I have a question? Ok I to have tongue cancer and in some of my lymph nodes. my question is did you have some of your tongue removed? I had most of mine removed and I wanted to ask do you eat solid foods still or do you eat through a tube. I have a tube in but I don't use it. I eat milkshakes everyday and want to go on trying other foods but am still a little scared to try. What is the easiest foods you would say to try first?
I was diagnosed with lymphomia in my mouth. We initially thought it was TMJ related and by the time it was ruled out I could no longer open my mouth or swallow. No surgery was possible but have had radiation and chemo. I eat and drink using a g tube. I consulted with a nutritionist and prepare my own meals but do also use Ensure Plus. I'd be happy to share more details as to what works for me. My primary dinner is boiled chicken and vegetables in chicken broth. Bottom line is to count calories for your daily weight goal and to blend the right ratio of solids to liquids so that they will go through the tube. Good luck!
My husband had surgery and treatments last year for mouth and neck cancer. They did transplant a flap as well as vein and artery from his forearm to inside his mouth. He can eat and talk very well, he just can’t open his mouth as much. He sometime needs to cut things like hamburgers. Do all the mouth exercises after surgery and treatments.
I will have this surgery Oct 27th. How are you doing? What complications did you have? Can you swallow and speak after the surgery? Are you happy that you had the surgery? Thank you for any comments.
Here’s something that hopefully addresses most questions .. after SCC surgery: long recovery period, feeding through nose tube, breathing through neck tube, speech will be almost impossible for a while, problems n discomfort with thick saliva which can be removed via suction device… Afterwards: must relearn to swallow via Therapy, stiff jaw can be minimized by Therapy, consider stomach feeding tube during, speech may be impacted so there’s a learning curve here, sleeping in semi-sitting position helps Dry mouth symptoms which will remain long after surgery, Nutrition may become a ‘purred’ one, so here a good strong mental state is very important as is keeping physically fit as much as humanly possible… Ask questions!… remember that you’re still ‘around’ for a reason…And most importantly, Don’t Give Up…Ever!
Here’s something that hopefully addresses most questions .. after SCC surgery: long recovery period, feeding through nose tube, breathing through neck tube, speech will be almost impossible for a while, problems n discomfort with thick saliva which can be removed via suction device… Afterwards: must relearn to swallow via Therapy, stiff jaw can be minimized by Therapy, consider stomach feeding tube during, speech may be impacted so there’s a learning curve here, sleeping in semi-sitting position helps Dry mouth symptoms which will remain long after surgery, Nutrition may become a ‘purred’ one, so here a good strong mental state is very important as is keeping physically fit as much as humanly possible… Ask questions!… remember that you’re still ‘around’ for a reason…And most importantly, Don’t Give Up…Ever!
Thank you for your positive outlook. My Dad just got his 10 year throat neck cancer didn’t return checkup - we were celebrating the news first week of February and now a few weeks later we find out he has tongue cancer at the base. It’s just unbelievable. My Dad is also a veteran and I feel so helpless because he’s such a strong and caring person. I just want him to stay strong and know he is here for a reason. I’ll keep coming back to your posts because in times of such struggle, pain and every other feeling we have to remain strong. For those going through it and those who help those experiencing things. Thank you!
Thank you for your positive outlook. My Dad just got his 10 year throat neck cancer didn’t return checkup - we were celebrating the news first week of February and now a few weeks later we find out he has tongue cancer at the base. It’s just unbelievable. My Dad is also a veteran and I feel so helpless because he’s such a strong and caring person. I just want him to stay strong and know he is here for a reason. I’ll keep coming back to your posts because in times of such struggle, pain and every other feeling we have to remain strong. For those going through it and those who help those experiencing things. Thank you!
Bibonita, How True that is… I am so sorry to know about your Dear Dad’s illness… Though I somehow survived 3long years in Combat, Cancer is one of those ‘hidden’ enemies that just sneaks up on you when you least expect it, even when ‘they’ tell one that ‘you’re Cancer free’ after extensive difficult treatments… one unfortunately is never free, but one can stay strong and forward looking and never give up, which I am sure your Dad will do…. Having you by his side will go a long way in helping him stay strong…. As you too must stay strong ok?
Thank you for your positive outlook. My Dad just got his 10 year throat neck cancer didn’t return checkup - we were celebrating the news first week of February and now a few weeks later we find out he has tongue cancer at the base. It’s just unbelievable. My Dad is also a veteran and I feel so helpless because he’s such a strong and caring person. I just want him to stay strong and know he is here for a reason. I’ll keep coming back to your posts because in times of such struggle, pain and every other feeling we have to remain strong. For those going through it and those who help those experiencing things. Thank you!
All of us with Head and Neck cancer realize that the treatments we received can predispose us to a recurrence. I panic with each canker sore I have in my mouth fearing it is a new squamous cell carcinoma starting up. I am 11 years from my initial SCC in my ear, and the post surgery radiation to my head caused its own damage, which may result in more cancer. You just stay positive and follow the medical advice and continue to improve your diet and lifestyle to help minimize the chance of a recurrence. I have had 4 different metastases over the years and the last one has disappeared with 2 years on a newer immunotherapy Cemiplimab. The side effects have been tolerable and I am happy with no evidence of disease. One of my favorite and helpful books is How Not to be My Patient by the palliative care Mayo doctor Ed Creagan. I follow a lot of his suggestions. Good luck to your Dad and you as a caregiver.
do you recommend having any radiation or chemo therapy after having a surgery for squamous cell carcinoma of the mouth? My Mom has to have an 8 to 10 hour surgery in the very near future to remove a tumor in her mouth and jaw then they will do the flap reconstruction and she had this cancer a year ago which they thought they had removed it all and now it is back and larger with a tumor . wondering if we need to have the other radiation and chemo therapies after to make sure all the cancer is gone totally? they are also removing one lymph node in her mouth area that has been swollen. thanks for info in advance.
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Pureed like baby food.
Is there any hope you will be able to open your mouth? I have severe trismus from the radiation so need a feeding tube. Treatment is tongue depressor.
Hi @hnc67, I'm hope that @nbkod7b @alpaca may be able to offer some tips about dealing with trismus.
You may also wish to join this discussion that @clevyjam started:
- Salivary Duct Recurrence w/ Trismus and Tinnitus https://connect.mayoclinic.org/discussion/trismus-and-tinnitus/
Or this one that @fwpoole started:
- Throat radiation and lock jaw? https://connect.mayoclinic.org/discussion/throat-radiation-lock-jaw/
Is the tongue depressor helping? How often do you use it throughout the day?
My husband had surgery and treatments last year for mouth and neck cancer. They did transplant a flap as well as vein and artery from his forearm to inside his mouth. He can eat and talk very well, he just can’t open his mouth as much. He sometime needs to cut things like hamburgers. Do all the mouth exercises after surgery and treatments.
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3 ReactionsI will have this surgery Oct 27th. How are you doing? What complications did you have? Can you swallow and speak after the surgery? Are you happy that you had the surgery? Thank you for any comments.
Here’s something that hopefully addresses most questions .. after SCC surgery: long recovery period, feeding through nose tube, breathing through neck tube, speech will be almost impossible for a while, problems n discomfort with thick saliva which can be removed via suction device… Afterwards: must relearn to swallow via Therapy, stiff jaw can be minimized by Therapy, consider stomach feeding tube during, speech may be impacted so there’s a learning curve here, sleeping in semi-sitting position helps Dry mouth symptoms which will remain long after surgery, Nutrition may become a ‘purred’ one, so here a good strong mental state is very important as is keeping physically fit as much as humanly possible… Ask questions!… remember that you’re still ‘around’ for a reason…And most importantly, Don’t Give Up…Ever!
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Helpful -
Hug
1 ReactionThank you for your positive outlook. My Dad just got his 10 year throat neck cancer didn’t return checkup - we were celebrating the news first week of February and now a few weeks later we find out he has tongue cancer at the base. It’s just unbelievable. My Dad is also a veteran and I feel so helpless because he’s such a strong and caring person. I just want him to stay strong and know he is here for a reason. I’ll keep coming back to your posts because in times of such struggle, pain and every other feeling we have to remain strong. For those going through it and those who help those experiencing things. Thank you!
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Like -
Helpful -
Hug
1 ReactionBibonita, How True that is… I am so sorry to know about your Dear Dad’s illness… Though I somehow survived 3long years in Combat, Cancer is one of those ‘hidden’ enemies that just sneaks up on you when you least expect it, even when ‘they’ tell one that ‘you’re Cancer free’ after extensive difficult treatments… one unfortunately is never free, but one can stay strong and forward looking and never give up, which I am sure your Dad will do…. Having you by his side will go a long way in helping him stay strong…. As you too must stay strong ok?
All of us with Head and Neck cancer realize that the treatments we received can predispose us to a recurrence. I panic with each canker sore I have in my mouth fearing it is a new squamous cell carcinoma starting up. I am 11 years from my initial SCC in my ear, and the post surgery radiation to my head caused its own damage, which may result in more cancer. You just stay positive and follow the medical advice and continue to improve your diet and lifestyle to help minimize the chance of a recurrence. I have had 4 different metastases over the years and the last one has disappeared with 2 years on a newer immunotherapy Cemiplimab. The side effects have been tolerable and I am happy with no evidence of disease. One of my favorite and helpful books is How Not to be My Patient by the palliative care Mayo doctor Ed Creagan. I follow a lot of his suggestions. Good luck to your Dad and you as a caregiver.
-
Like -
Helpful -
Hug
1 Reactiondo you recommend having any radiation or chemo therapy after having a surgery for squamous cell carcinoma of the mouth? My Mom has to have an 8 to 10 hour surgery in the very near future to remove a tumor in her mouth and jaw then they will do the flap reconstruction and she had this cancer a year ago which they thought they had removed it all and now it is back and larger with a tumor . wondering if we need to have the other radiation and chemo therapies after to make sure all the cancer is gone totally? they are also removing one lymph node in her mouth area that has been swollen. thanks for info in advance.