My dads radiotherapy hasn't worked...whats next?

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 ) 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?

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?

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

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.

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

http://www.thoughts.com/clems1950/blog/part-2-big-c-211420/

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

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!

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

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 , 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.

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.

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.

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

Sorry, Dr Joshi reminded me that he had his teeth removed, then he started radiotherapy.

Siobhan

p.s. Thank you Dr Joshi

Hello Siobhan,this is very distressing and confusing for you and your family.Everyone reacts differently to the treatment they are given,why your father did not get the expected results the first time I cannot answer and only your fathers doctors can shed any light on this. Maybe at some point when visiting you may be able to arrange an appointment to speak with them privately might help you understand this .But at the moment the doctors have to give your dad the best options available to get rid of the cancer and preserve his life

Your father will be under pressure and concerned about the side effects of surgery regarding his voice and his ability to speak.His docotors I am sure will have gone through all this with him and I am sure they would not be going down this road if they felt there was no benefit for your dad .He will be feeling frightened and concerned, but inside I feel sure he feels he needs to do this and that is why he has consented to have operation.

Cookey is right, read through the experiences of other patients case studies as this will help you to unnderstand that although there may be a change in his voice given time he will get his life back and enjoy his family all though there may be a few changes .

Unfortunately cancer and treatments do leave the patient with unwanted legacies in most cases especially head and neck .Given time and everyone in the family adapting then can be managed and a quality of life achieved .

Your concern and worry is normal .Reading past case studies will help you understand what your dad will experience and in turn help you to cope with your fathers outward behaviour till he gets through his operation and into recovery.

Thinking of you and your family ,be strong .

Bell.

The reason your dad had his teeth removed is because of the danger of ORN which is a problem with healing in the jaw bone caused by radiotherapy damage.This means that any surgery to the neck or jaw. including tooth extraction may run into difficulties after radiotherapy treatment.The usual treatment is hyperbaric oxygen to increase the healing capabilities of the tissue.If things get worse i would get back onto the surgeons

Hey. What a nightmare. Well, the speech therapist noticed that my dad coughs everytime he sips, so she had his chest checked and he also went for an xray. It turns out thathis thinner liquids are entering his lungs, but he has a dry mouth from RT. What do you do? well the nurse poilitely said "its your choice". So my dad was given a new thickener to add to his milksakes. So hes avoiding drinking too much water. Then his specialist nurse said she needs him to drink water to prevent infection. What do you do? I dont know and neither does he. But I do have some questions. The doctors see my dad as a positive man. Me and my sister, we don't. Hes not scared of dying and therefore is able to freely and openly discuss anything. Its been 7 weeks since his op. Hes had bone removed TWICE. hes been told not to drink water ot he might kill himself, but then he needs to drink water to prevent infection but he also needs it as he can hardly eat and he has a dry mouth. I can empathise with this. But he is CONVINCED he is not going to get better. I said its almost been 7 weeks since your op, it takes that more more for a person to lose a stone in weight. Ive had a read of other people storys and seeing that it takes about a year really to recover. Everything my dad is facing it just seems endless and would love to know if this is normal? I think it doesn't help as his RT didn't work. Hes only really seen home and hospitals since Aug 2008, ive taken him for a drive about 4 times since then. I have a lot of faith but with constant negativity, i fear i am losing it.

sorry its amlost been 9 weeks since his op