Squamous cell carcinoma on base of tongue and lymph node

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Squamous cell carcinoma on base of tongue and lymph node

by Tmoosa on Tue Nov 21, 2017 08:03 PM

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Hey everyone, I’m recovering from my TORS surgery that took place 3 weeks ago. I seem to be getting better every day and my speech is improving slowly. Before the surgery I had a biopsy and they removed 17 lymph nodes on the right side of my neck. After biopsy they told me I would not need radiation just the surgery to remove the cancer because it was caught very early. I was so relieved. Then when I went in for my post op appointment after they removed the spot on base of my tongue and all the lymph nodes on my left side they told me I need radiation on the right side of my neck because the path report came back there is still some cells in there. I was and still am devastated. I’m scared to death because of all the horror atories I have read about radiation. What can I expect with treatment, is it painful? Is it worse than the surgery?

RE: Squamous cell carcinoma on base of tongue and lymph node

by PopPop on Wed Nov 22, 2017 11:35 PM

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Tmoosa, 

I am sorry to hear that there was a change in the way that the Doctors were going to treat you after your Surgery. I too had Base of Tongue cancer, but it was in 2004. What I am about to type will be older news in a way as things have changed in the way Radiation is directed.

I had at the time IMRT Radiation, newer types were coming out but the Hospital I was going to had the IMRT. Because they wanted to make sure that they got any/ all stray cells, I seemed to be given a wider beam and at a longer amount of time. 

I was not given Chemo as they wanted that as a Back-up plan in the event the Radiation did not work completely. I am happy to report, it did work, but at a cost of side effects. I am here to watch our Grandkids grow up, I can handle the side effects. Again, remember things have changed over the last 13 years and improved a fair amount. 

Treatment in the first two weeks will not take a big toll on you, but be advised, each of us handle Surgery and Treatments differently. One size does not fit all here. The important part is to listen to the Doctors and Nurses. When I was told to put cream on my neck 3 times a day, I doubled that. When I was told to rinse my mouth with Baking Soda and Salt solution 3 times a day, I did it as often as I felt I needed to. Hydration, Hydration, and did I mention Hydration.

I had part of my Tongue removed at Surgery, so I had a PEG Tube for nutrition and fluids. I was also right side Base of Tongue, so the right side got hit more than the left side with the Radiation. You will get thru this like many of us here. 

Ask as many questions as you need to as there are very knowledgeable people here that have traveled the same path as you so lean on everyone. The important part is to cross the finish line. As one poster many years ago stated, some run, some walk and others crawl, but complete the Treatments.

My Best to You and Everyone Here

RE: Squamous cell carcinoma on base of tongue and lymph node

by Sdurnell on Fri Dec 01, 2017 04:50 AM

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Timoosa,

Congratulations on your recovery from surgery.  It would be nice if they could have gotten everything with surgery, but that is rarely the case.  It's too bad, though, that they led you to believe that you'd not need radiation when that was always a possibility.  Every one of us is different, and doctors never know for sure what they will find when they open one of us up.

Radiation is indeed miserable, but we all survive it.  I'm sorry to inform you that my doctors say that none of their patients have considered surgery worse than radiation.

As PopPop said, the first couple of weeks you will likely feel pretty good.  (Like him, I didn't have chemo so was spared that complication.)  Maybe just a bit tired.  But during the third and subsequent weeks the pain starts, either in the neck or throat or both, fatigue sets in, and your sense of taste starts to become corrupted.  This makes eating difficult. 

Doctors vary about their recommendations for feeding tubes--some insist on them, some forbid them, and others leave it up to the patient.  I started treatment without one but ended up getting one due to complications.  It saved my life. 

You can expect to lose weight and perhaps need pain medication.  Radiation to the surgery scars can add to the problems with them.  The effects of radiation are cuumumlative, so you will keep feeling worse even after your radiation sessions have ended, but it's only a couple of weeks usually.

Recovery is slow.  You may not notice much improvement for a while, but your body is doing its best during that time.  Eventually you will start to notice small things, and they will add up.  

Try to get up and outside a bit every day if the weather allows.  Let friends and family members do things for you--they feel helpless but want to be there.  Stockpile movies and reading material.  And ask for medical help for physical and emotional help if you need to.

You may get more help if you go to the head and neck section on this site, as it's more active than this one.

I am 7 years out and cured of cancer.  Some day you'll be there too.

Susan

RE: Squamous cell carcinoma on base of tongue and lymph node

by bbpbarton03 on Wed Dec 20, 2017 09:22 PM

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I seen you are post radiation from back in 2004. I had a couple questions about Long term side effects of radiation. This is all about my dad he is 76 and has had tongue cancer twice in the last year and a half, two surgeries and 35 radiation treatments. He is 10 months post radtiation now and is slowly eating a few soups here and there. Still on boost for full nutrition. However he is having a lot of pain on his tongue. A lot of white marks on his tongue but they look all like scar tissue. He says its very sore all the time also is having a hard time breathing i dont know if that would be what i have heard about the esophogus closing up or his airways not fully open anyone have any other troubles with that? any solutuions?? thanks

RE: Squamous cell carcinoma on base of tongue and lymph node

by Sdurnell on Sun Jan 14, 2018 02:18 AM

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There are many possible side effects of radiation for this cancer, but most of them subside the first year after treatment is done.   I am 7 years out, though, and have recently  discovered "long-term radiation effects."  My voice is becoming gravelly and sometimes I can't speak with the volume I'd like to.  Other people at my stage or even farther out sometimes have trouble with speaking or swallowing as well.  We all have   issues with our thyroids and some of us with carotid arteries too.

But your dad is still pretty recently out of radiation, so he will not be suffering from those.  He may have thrush, a fungal infection many of us get in our mouths, or another kind of infection.  He may also be having esophageal strictures if he's having trouble with his swallow;  that was something I dealt with for over a year, and for which I've had to have throat dilations ever since.  So there is something that can be done for that.

I suggest that he might want to go to his primary doctor with his swallow breathing problems. This doctor would also be able to treat his thrush, if in fact that is what is bothering him.  His ENT should be able to help him with swallowing--s/he might be able do a dilation if that's what's needed or can recommend a qualified speech therapist who can help with exercises if that's what he needs.

Is he having trouble with taste?  For that some folks recommend going to a buffet restaurant occasionally to sample various foods and tastess.  It often takes a year or two, sometimes more, for the sense of taste to recover as much as it is going to. 

I also suggest that he try other easy-to-eat foods, like scrambled eggs, puddings, cottage cheese, ect.  And smoothies are a great source of nutrition if made right.  You can use Greek yogurt (highest protein) and berries or other fruit if he can tolerate that.  Otherwise, bananas, ground nuts (you can grind them in a blender) and other dairy products like ice cream.  Also try foods at different temperatures.  And try eating more than three times a day.

Best of luck to you and your dad.  I notice that this post is several weeks old, so maybe things are better already?

Susan

RE: Squamous cell carcinoma on base of tongue and lymph node

by bbpbarton03 on Sun Jan 14, 2018 02:49 PM

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Susan,

Thanks for the information. Things actually went downhill since that post.  My dad is currently in the hospital and has been for a week now for pnemonia, strep, and influenza.  The strep infection actually got into his blood.  My dad has not left the house in over 3 months and still got this sick its sad. Hes also developing slight thrush from the antibiotics and tongue ulcerations since hes not been able to brush his teeth and eat as much lately. His strength is little to none and his asperation i believe is back. So hes having a hard time but his tongue is always so sore from scar tissue continually producing. You have tongue pain? He eats small amounts of potatoes n gravy, applesauce,  he drinks VHC boost every day and has chicken noodle soup too. But its so painful for him to eat and now with asperation problems the feeding tube might be put back in who knows.... uggg hope he can just feel somewhat okay again ... it will be a year next month. 

Brooke

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