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After reading these posts, I become more thankful that my T2 N0 tongue cancer required no additional treatment.  There was chatter amongst my MSK team about doing RT,  largely because of the presence of a 9mm perineural invasion. The team was split on my prognosis.  Thankfully an IMPACT study of my tumor revealed that it wasn't overly aggressive, as tumors go, thereby alleviating the perineural invasion concern.  So all clear, no further treatment!

My neck and tongue surgery was tough, but only for about a week, and mostly the tongue.  Dr. Singh removed 54 lymph nodes from my left neck and a quarter of my tongue.   No post-op pain in the neck, tongue pain was gone after one week.

My heart goes out to all of you who underwent RT for mouth cancer.  The focus of this vile treatment is the face, taste buds, tongue, teeth, jaw, salivary glands and onward.  Some side effects resolve over time, some don't.  Healthy flesh is transformed into scar tissue, causing complications should the need for future surgery arise.  All for a marginal improvement in the probability of long-term survival along accompanied by an acute decline in the quality of life. 

Hi all, I have actually seen some improvement but mainly because I went to my local Head and Neck support group meeting and there was a speech therapist present who was talking to my cancer nurse. I explained the issues I was having with swallowing and the sensitivity to toothpastes and certain flavours etc and through this got seen by the speech therapist and had a videofluroscopy done which showed where radiotherapy had damaged the base of my tongue. From this I now have speech therapy every 2 weeks (my choice) to learn to do lots of exercises to strengthen and stretch my tongue. I have been doing all the exercises religiously and am noticing a difference. I also have to write up a food diary and try certain foods that aren't sloppy but now use these to help my hard swallow exercises. I will have to do the exercises for the rest of my life but they are giving me confidence back which is brilliant. I can now move my tongue around inside my mouth more ....still a work in progress though. I also use Xylimelts every night before I go to bed and in the morning I have more saliva which is great, I also use them an hour before I run too. Also using a toothpaste and mouthwash for dry mouth which I get on prescription. 

There are positive things you can do to help improve your quality of life, it's just asking the right people and sometimes pushing for that help. 

Unfortunately I do understand that after 5 years, the support isn't there, however it isn't the hospital's fault as they have to deal with the multitude of patients being diagnosed......

Wishing everyone well though. Best wishes, Karen

Could I have colon cancer at 20?

I am a 20 year old female and for about a year to a year and a half, sometimes I will notice blood on my stool, it isn t on my toilet paper when I wipe, so I dont think its hemorrhoids. It looks a bit darker than bright and sometimes there will be just a dab of it, and other times sizegenetics like today there will be a good bit of it. I have no idea if it runs in my family or not, so I cant say if it does. Also sometimes on my right side by my hip bone will tingle, like its numb or something. Other than that, I m not having any other symptoms and this has been going on for like a said a year to a year and a half.

Everyone is going to say: go to the doctor. But I dont have insurance or enough money to go. I know getting advice online isn t the best route but I am a hypochondriac and its eating away at me.
Last edited by YuriMcdaniels

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