Hi there Mom of Two

Glad to hear you are doing well

I had a tumour removed from the left side of my tongue just over a year ago. Like you I didn't need a flap. My lymph nodes all came back negative so I didn't need to have radiotherapy either. I'm sorry you have to go through that, but best to zap this thing with whatever is available to see it off once and for all! Do let us know how you get on.

My speech is fine, too, everybody says that they can't tell any difference though I do still feel as if I am slurring occasionally, especially if I am tired. I also sometimes feel as if my tongue is very big in my mouth, even though its actually smaller than it was before - do you find that?

Wishing you all the best.

Gwyn

Hi Mom

I'm glad things have turned out well for you. Must be the position of the tumor that helps to determine whether or not a flap is necessary. My tumor started on the underside of my tongue and was working its way up and around; the left side of my tongue was removed up to the center (I used to have a cross-shaped mark near the tip of my tongue; now it looks like an L). My flap looks like I've always got gum in my mouth.

Sorry that you have to have radiation.

May this year be better than last!

Hi Mom, I had SCC in my sinus and 41 RTs but the RT was nowhere near as bad as I thought it would be. I know everyone is different, and that is only my personal experience, but try and stay as positive as you can as I'm sure that helps. All the best. Hagg.

Hi - hope you are doing okay and feeling better. I decided not to go with the radiation in the end. The oncologist said the risk would outweigh what would only be a very minimal gain in my case, and my ENT specialist concurred with his opinion.

I have to have check-ups bi-monthly at the moment (mostly becuase of the failure of my first flap) but all in all, I'm feeling really good.

My speech is excellent and I can eat pretty much anything again.

How are you getting on?

Tamara

I am getting along fine. My radiation therapy starts on Wednesday the 21st. I will be taking 33-35 treatments. I recently found out my aunts husband. ( saying that since no blood relation ) Had tonsil cancer. He under went chemo and radiation therapy. He is doing fine now but never had any surgery. He is 2 years in remission. My dr said I should do fine and be able to get on with my life once the therapy is over. She said I will be able to drive myself to treatment about halfway through. Hopefully I won't feel to bad especially with my two sons to worry about.

Hi! Mom,
I would like to give some of my advice on Radiotherapy and that is to make sure that you apply plenty of skin cream to the areas where the radiation is going to be aimed and it is very important to start as soon as possible, even NOW as this will reduce the burning of the area being treated. I used Sorbelene with AloeVera 2 to 3 weeks before treatment started and all the time during and for a long time after my treatment finished and I never had any scaring or blistering at all ( apart from a little on my right ear lobe where I hadn't put any cream).
I know this is alittle bit late to be giving this advice but it is never too late for this treatment so go for it Mum and good luck with the R/T, mine ended up fine as I am sure your's will.
Love Trev

Hello Trev

Can you please clarify if you put on the skin cream just before the radiotherapy session or after the session. I heard that it was inadvisable to use just before the treatment as the cream focussed the radiation onto the skin causing burns.

Thanks, Vinod

Hi Mom!

As Dr. J. asked Trev, I was told not to have anything on the skin that was to be radiated; if you do it's akin to boiling in oil! No, you don't bubble on the table, but you add to the burns. Someone here (I think it might have been pete228) had some problems because he hadn't been given the warning.

My doc also advised women not to wear makeup on the affected area during radiation as makeup contains metals. Your doc or the techs can tell you exactly where those areas are. I had the tattoos placed on my face and neck so I had no problems identifying the no-no areas; others had their masks marked rather than their skin. (In case you're wondering, you can't see my tattoo marks at all.) Also ask where the exit point is, you'll need to apply aloe or Aquaphor or other gel there as well. You'll also lose hair at the exit spot; mine was at the hairline on the left side of my neck, about two inches or so. My hair is close to shoulder length so the bald area was covered and unnoticeable to anyone but me and my hair stylist.

Before you go in for your appt, wash the areas to remove any residue. You can apply whatever you'll be using immediately after treatment - I usually did it in the locker room before I went for my car. I slathered stuff on every time I thought of it and had only red skin that darkened and eventually faded away. It didn't hurt, peel, ooze, itch, etc.

I was able to drive myself to and from the hospital every day except two. That was only because I'd been told I wouldn't be able to drive during the last weeks so I'd made arrangements with ACS for rides. The volunteer was such a crabby old man and terrible driver that I lied and said my daughter was going to be doing the driving and I didn't need his service.

After rads (1130AM) I'd meet friends for lunch or go shopping or do whatever I needed to do. I didn't have chemo or surgery so I was a lot better off than most of the posters on this board - every one of us is different though, despite what might sound like identical diagnoses and treatment. After doing whatever I needed to do after treatment, I went home and crashed.

I slept a lot! It was wonderful deep delicious sleep with no dreams or nightmares, just great sleep. Am very glad that I didn't have young children to take care of and hope you've made arrangements for help.

It took me until the third day to finally settle in and realize that the rads procedure itself doesn't hurt and is over rather quickly. I counted the clicks and buzzes and memorized the sequence that the machinery uses as it moves from place to place before sending out the zaps. Good fun.

Good luck to you! Keep checking in to let us know how you're doing.

Mimi

Hi! All,
Yes I should have explained that a bit better. Yes the cream that the Hospital supplied was OK to use before treatment however not immediately before treatment and not excessive, but it was important to keep the area covered after treatment and during the night.
Sorry about that I am working in a drug induced state and say things incompletely.
Thank you Doc for picking up on that.
Love Trev

I have a couple of tips re the radiotherapy. I had radiotherapy for tonsil cancer.

One is buy yourself a desert scarf to cover up the redness when you're out and about. You can get them from http://www.joebrowns.co.uk/ or www.surplusandadventure.com. These scarves are considered very trendy and cover the red areas up much better than a simple knotted scarf.

Secondly, invest in some Radiance cream. You can get it online from http://www.shopatpennybrohn.com/ which is connected to Brisol Cancer Centre. I found out about it during the treatment from this forum, used it and my neck healed up very quickly with no scars.

I was lucky enough to have a group of friends who offered to take me to and from the hospital. The radiotherapy will make you feel more and more tired, so I always used to go straight home afterwards and watch T.V.

Hope everything goes well. Best wishes


Chris

yes it was me that was applying some type of sauve which the nurse had given me a sample. as i laid down on the table to get my rads i mentioned to the tech that my neck sure was burning from the last treatment. they took one look and saw the greasy stuff on my neck and washed it off thoroughly before they gave me my treatment. said it is just like putting grease in a frying pan. i guess maybe it would be okay to use it after a treatment, but one would have to make sure that every drop of it was washed off before receiving radiation. as for myself, the burning was bad enough that i never used it again.

Hello Mom, My husband had Stage IV cancer of the tongue - no surgery just chemo and rad. I can't believe that it is nearly two years ago he was diagnosed. I have to look back at my postings on here to remember just how it was. He has now been declared cancer free and after our next appointment, we will be on quarterly, so there is a nice bright shiny light at the end of the tunnel.

As Mimi says, hope you have got help with your little ones 'cause everyone seems to suffer from the tiredness and problems with swallowing about halfway through the r/t

Good luck

I am only to my tenth radiation treatment. My mouth is so dry. My tongue is sore. I can't taste anything. Outside looks same still. No sign of radiation to face and neck. How do you cope with not tasting anything. I have to use plastic utensils now. If I use metal food tastes like metal.

Hi! Mom,
Just like to keep pass on my best for this part of the R/T saga as the situation may not get much better for quite a while and (I hate having to say this But) Iam still having problems with my taste and that is 17months after my treatment finished. I found that experimenting with different foods and drinks until I found a mixture of tastes and flavours that gave me some satisfaction. Believe me you do get used to the metalic taste and often the soreness of the tongue is brought about by the spices in the food so try and sample different ones, drinkig was a problem and after soooo much water you will find something better(I drink a lot of Iced Coffee which is a big seller over here, and it is nothing to drink 3 litres a day plus other drinks), Have you been keeping up with the cream around the radiation zones this is important.
I was fortunate(if that can be called fortunate) to have a PEG fitted and that gave me a food source(even though it was an unpleasant source) that kepy my weight up and I didn't have problems with my throat soreness.
Well I hope that this helps a bit and keep in touch and
"Stay Strong"
Love Trev

Hi Mom, sorry to hear you're suffering. Like Trev, my taste never really recovered either. It will probably improve a bit with time but you do adjust to it and it becomes the norm.
I found it was the same with the whole cancer thing. If someone had told me what ops etc I would have had done when I was diagnosed, I would never have thought I could live with it. Now, all this time on, I cope fine and rarely think about it. Try and stay positive if you can. Hagg.