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My dads radiotherapy hasn't worked...whats next?
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Early September we found out that my dad had mouth cancer. It was in its first stages. He decided to opt for radiotherapy, its been grueling to watch, but in December he was putting on weight again, the nurses and doctors were very positive. Just before christmas my dad yawn, and he felt the lump, hotspot come basically "smack bang" where it had been before. He even put on weight! So positive! Then he couldnt eat. Hes experiencing pain from his head to his shoulders and last week went to check this out, it turns out to be muscular pain. As he was getting this checked, it turns out teh radiotherapy hasn't worked. Then Friday we found he has less than sixth months left to live. He goes for another bisopsy on tuesday, but hes going into theatre for it as hes too sore.He will have MRI scan on Wednesday. Hopefully, if these turn out ok he does have the option of surgery. However, hes scared. Scared beyond belief. He doesn't want to surrender giving up all this capeabilities e.g. talking, going to the toilet, combing his hair etc What have your experiences been with surgery?
 
Posts: 17 | Location: Manchester | Registered: 04 September 2008Reply With QuoteReport This Post
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Hi Siobhan

That's one of my favorite names, by the way.

The effectiveness of surgery depends a lot on the stage and location of the tumor. I had surgery (hemiglossectomy and resection) for stage 2 tongue cancer nearly 4 years ago and it's been quite successful--still cancer free, no rt, no chemo. What type of surgery are the docs suggesting for your dad?

Hoping for the best.

Julia


Howdilly doodilly, survivorinos!
 
Posts: 941 | Location: Hollywood on the Huron | Registered: 15 February 2008Reply With QuoteReport This Post
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Hi thank you, my names always a good topic starter or if bored people tend to talk about the spelling. My dad goes to hospital tomorrow for a scan and biopsy, but he will be in over night. I don't know what type of surgery, all i know is that his jaw will be broken to get to it. A skin graft. I'm really not sure. He will speak to somebody who has had it tomorrow, but hes very scared. He set up an account on thoughts.com, his name on there is clems1950 and i know he has asked for advice on there. Its just very 'arrrrrrrrrrghh' atm....How long did it take to heal? theres 1000 questions and i cant put them into words other than 'why' and 'how' (which i usually get a little telling off Smiler) he is sacred about surrendering his ability to do things for himself and he does not know if he will come out from surgery being able to do these things again, almost like a gamble, which he already took with radiotherapy. How did you feel?
 
Posts: 17 | Location: Manchester | Registered: 04 September 2008Reply With QuoteReport This Post
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Well, understandably I was scared out of my shorts--I was very lucky that my parents and siblings were able to be there with me. I'd never been in hospital before, and there I was, going in to have half of my tongue removed.

I'd say it took about a month for my tongue to heal to the point where I was comfortable talking again, although I was still a bit worried for a while that, if I laughed too hard or sneezed, my flap would break off and the left side of my tongue would fly across the room. I also had an NG tube and trach for about a month. The worst part was the several-times-daily trach cleanings that my poor mom had to performed.

Immediately after surgery I felt FANTASTIC! For the first time in a couple of months my ear didn't hurt (referred pain from the tumor in my tongue that felt like a letter opener had been shoved into my ear canal). Plus, I was on some really nice pain killers for the first few days post-op.

My surgery included a modified neck dissection. My neck was opened from about the front midpoint to nearly my left ear. As far as I can tell, the work was done through that incision (that could explain why my doctor needed to replace the floor of my mouth on that side). I've subsequently read how a hemiglossectomy used to be performed (as recently as the 1980's) and it involved breaking the jaw. Where is your dad's tumor?


Howdilly doodilly, survivorinos!
 
Posts: 941 | Location: Hollywood on the Huron | Registered: 15 February 2008Reply With QuoteReport This Post
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Hi siobhan
i find this a bit confusing.why is your dad having such extensive surgery if he has been told he only has six months to live?

Radiotherapy alone is an unusual course of treatment,as most people have surgery ,radiotherapy and possibly chemotherapy.
If your dads cancer is not curable,i would have expected them to go down the road of palliative chemotherapy and pain management.the pieces of this jigsaw dont quite fit.If life expectancy is short then quality of life should be the next consideration,and i think it is a lot to expect your father to cope and recover from such invasive surgery,if he knows it is not going to cure him.
Have you talked this through with his doctors?

liz


Love liz

Never take your eye off the ball it may just smack you in the mouth
 
Posts: 669 | Location: Harewood West Yorkshire | Registered: 19 February 2007Reply With QuoteReport This Post
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Thank you Julia, talking on here makes it a lot easier and just knowing things such as that which i will tell him will hopefully help him too. His tumour is on the left cheekish and on his left tonsil. To cookey, if youre confused imagine how confused we are! First of all the doctors said that if he opted for radiotehrapy and it didn't succeed then he couldnt have surgery, now hes been offered it - as long as his biopsy and scans come out ok. My dad obv asked question such as if i chose to have palliative care how long will i have left and he said from what i have seen about 6 months. This is all we know. the next few days are judgement day really. hes not been offered chemo, im not too sure why. We're in in total shock to be honest.
 
Posts: 17 | Location: Manchester | Registered: 04 September 2008Reply With QuoteReport This Post
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And i do know some of the question my dad has for tomorrow, maybe you could help out. how long was you in hospital after the operation? How long did it take for you to talk again?

Siobhan
 
Posts: 17 | Location: Manchester | Registered: 04 September 2008Reply With QuoteReport This Post
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Posts: 17 | Location: Manchester | Registered: 04 September 2008Reply With QuoteReport This Post
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Siobhan
those questions are really hard to answer without specific information of what surgery your dad is going to have.

Robin had a radical bilateral neck dissection and removal of parotid gland tumour,and he was in hospital for three days.If your dad is having his jaw broken and a skin flap and possibly a tracheotomy then he will be in hospital for possibly a couple of weeks.wether or not he can talk will depend on wether he has a tracheostomy.Robs first operation was to remove part of his tongue and he could talk fine straight away.

liz


Love liz

Never take your eye off the ball it may just smack you in the mouth
 
Posts: 669 | Location: Harewood West Yorkshire | Registered: 19 February 2007Reply With QuoteReport This Post
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hey, ive asked a few more questions and the tumor is also on the roof of his mouth. if he has the surgery, his jaw will be broken still, skin graft from his torso and arms (i think there was a mention of veins too) and he will have a tracheotomy. im not too well up on medical terms. hes in hospital atm, he had MRI scans and biospy. Tomorrow is judgement day really and i just hope and have to belive that it is better news than we have has over the past couple of days!
 
Posts: 17 | Location: Manchester | Registered: 04 September 2008Reply With QuoteReport This Post
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Hi siobhan

well thats a bit more information and hopefully tomorrow you will have some more.
A tracheostomy is a hole cut in the wind pipe ,with a tube inserted i to it.This is to keep the airway to the lungs open as there will be a lot of facial swelling.and his breathing may become difficult if the swelling is severe,It should be temporary and when every thing settles down hopefullythe tube can be removed.If he has very extensive surgery you are going to find it very frightening when you go to see him,so you must prepare yourself.Just remember it is not permenant and he will look much better after a couple of weeks,so be strong.

love liz


Love liz

Never take your eye off the ball it may just smack you in the mouth
 
Posts: 669 | Location: Harewood West Yorkshire | Registered: 19 February 2007Reply With QuoteReport This Post
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Hi, just an update. My dad got his results and they want to operate on Monday. its really hard trying to voice my opinions, myabe its the times? I'm very you know if you can do something then do it. Where as my family are very...I don't want to not be able to have the same speaking voice again...so i have a few questions. Will he have the same voice? And i've forgot the rest Smiler, but I will think of them and ask. Its just something to make me a bit more educated in the sense of peoples experiences so I can speak about it with my dad.
 
Posts: 17 | Location: Manchester | Registered: 04 September 2008Reply With QuoteReport This Post
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siobhan

your best bet is to read some of the case studies here on the site.your dads treatment is not unusual and someone here will have gone through it.Yes a traceostomy will chnge his voice ,but then radiotherapy will do that as well.it is a very small price to pay for a cure my love.


Love liz

Never take your eye off the ball it may just smack you in the mouth
 
Posts: 669 | Location: Harewood West Yorkshire | Registered: 19 February 2007Reply With QuoteReport This Post
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you see i say that. His speacialist have said you have nothing to lose. me and one of my sisters have teh same thought but my other sister and my dad have the same. We arent bikering in front of him or anything and we support him, but its just so hard 'cos when im thowing things back at him such as 'its a small price to pay' its almost disrepescting him. h belives he would rather be able to speak how he does and have his abilities for the next how ever many months than taking the gamble of having these taken away from him - especially after already having treatment and it didn't work. He found out he had cancer, a week and a half later he started radiotherapy, 8 weeks later he gets told it didn't work then a week later hes being booked in for surgery. Its almost 'bam bam bam', i mean it is for us, it must be worse for him. Especially as half way through his radiotherapy his brother died. I will take your advice and read some stories, thank you! Radiotherapy didn't change my dads voice, he did go through a phase of sluring his words - maybe it hasn't changed because it didn't work. He was given radiotherapy alone, i'm not too sure why, maybe he needed a combination of treatment and that why it didn't work?!

Siobhan xxx.

p.s. Im sorry if these messages are all over the place, its because i have so many thoughts its just very confusing.
 
Posts: 17 | Location: Manchester | Registered: 04 September 2008Reply With QuoteReport This Post
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Link: EXPERIENCES > PH'S STORY
quote:

I got tongue cancer. This was treated by surgery and radiation. I think I am now cured. The surgery involved removing the tumour and some more of the tongue as well. The radiation required the removal of teeth. After about two years I was given some false teeth. It began in 1997 when I was 59. I live in Yorkshire, England..."


Link: EXPERIENCES > ANANTH'S STORY


Disclaimer: Please see your own dentist/doctor for a proper diagnosis as my words should not, in any circumstances, be taken as dental/medical advice.

"If you see what is small as it sees itself, and accept what is weak for what strength it has, and use what is dim for the light it gives, then all will go well. This is called Acting Naturally."
Lao-Tsu, Tao Teh King
 
Posts: 3893 | Location: St Luke's Hospital, Bradford and Pinderfields Hospital, Wakefield | Registered: 14 December 2002Reply With QuoteReport This Post
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