Dr thinks radiotherapy for DH after surgery for brain tumour, anyone have experience of this?

[onlyjoking9329]

we have yet to be given a treatment plan, DH was told he would be re scanned in 3 month which should be anytime now. we were told that they wouldn't be able to remove all of the tumour so radiotherapy may be an option. we don't know anybody who has had this treatment so we are looking for info on things like side effects and how often/long the treatment is likely to be.

bumping for you oj

Hi onlyjoking. My DH had brain radiotherapy recently. Treatment was daily for 3 weeks. He was told that he may have mild headaches and tiredness but nothing else. He experienced one slight headache and the tiredness associated with any radiotherapy. You can also feel nauseous. Thinking of you all.

thanks for the replies, Dh has a lot of headaches anyway so that might not change.
how long did each treatment last? DH is saying that he is going to refuse all treatment which is not very good but i am hoping to convince him otherwise.

sorry can't help, just wanted to send best wishes to you and your dh

Radiotherapy made it possible for my dad to meet his grandchildren. It was very painful and hard for him (and us) but gave him nearly 10 years he wouldn't have had. Well worth considering, but there are side effects etc. so needs weighing up. This said, everyone is different, so it may affect people in different ways. Some people have very few or even no side effects. Good luck with it all. x

My brother had the same treatment, radiotherapy I think about 6 months after his surgery. He got over the sergery very quickly but was on some steroids that made him feel invincible.
The radiotherapy was 5 times a week for about 6 weeks IIRC and it knocked the crap out of him. He could of gone back on the steroids, but he did'nt want to because of the side effects of those.
He used to get seizures, was how he found out something was wrong, and then it came to light he was getting a lot of headaches. The seizures have completly stopped and the headaches are drastically reduced.
It's now been about 18 months since he finished the radiotherapy, and he sounds better every time I speak to him. I think the side effects depend on the location of the tumour. My bro's speach was slightly affected, he would find it difficult to find the right word and he would tire easily. He would also get flustered easily, I think it was down to now being able to express himself quick enough.
But now he is a whole new person, really back to who he was but a lot more positive and up beat.
I must admit he has surprised me how he has handled it, I don't honestly think I could of coped so well.
I'm sorry this is so long, I hope it's helped. All the best to you and your DH, it gets better honest

thanks for the responses.
Dhs tumour seems to affect his mood and memory mainly, he has headaches gets very tired and has some mobility problems with his left leg but the leg problem might well be due to the MS.
sounds like the radiotherapy althou difficult could help him, now to convince him when he just wants to give up

Is there any support groups or charities that you and your DH can talk to? The Dr might be able to set something up for you.
My Bro has a really positive Oncologist who he sees every 3 months now. I think they set you up with one after the Surgery for your follow on care which could include the radiotherapy.
It must be so difficult for you both, and I really feel for you.
Obviously I don't know you or your DH and what sort of relationship you have, but your DH might find it benificial to talk to a third party about how he feels about the up coming treatments. I know my Bro got a lot of help from a local Hospice his Dr set up for him. I think he felt if he spoke to any of us he would be burdoning us.

i think DH thinks if he doesn't talk about it then it's not there.
it is very stressful we have three kids with autism who are gladly unaware of things but it will be very difficult to sort out childcare for frequent hospital trips, DH is now not allowed to drive due to absences which could move on to seizures.
i just wished he would talk to someone.

Have you got a date for your scan yet?
It's going to have to be spoken about then, so you can't really blame him for wanting to shut himself off from it all. I think that's what my reaction would be to be honest. Ignorance is a very safe place sometimes.
My Bro was on anti-depressants for the time leeding up to the surgery, it made it a lot easier for him to cope day to day. His GP was very helpful with explaining what all the jargon was and general advice on how to cope.
this Web Site might give you some leeds.
HTH

it would help if he wasn't in such denial thou i can understand why.
i have tried to find a message forum for brain tumours and the cancer backup one isn't very active i never got any response at all.
most days he says there is nothing wrong with him, he says he has cured himself.

Not sure what else I can suggest.
I was removed from it all with my Bro as I live in the states, so have no experiance of living with it day to day IYSWIM.
I'm here for you if you need someone to talk to.
I'm sure it will get better once things start to happen, at least the denial will have to stop.
Sorry I can't be more help, thinking of you.

you have been a help, i can't really talk to anyone in real life as it gets too upsetting and i can see they aren't comfortable with it.
he should be getting another scan and a treatment plan very soon. i am hoping he will then be able to accept it instead of denying it.
thanks for your help.

Hi, OJ, in my nurse training I remember briefly looking after people who'd had this - I do remember tiredness and nausea as common side effects, and I think treatment regimes vary for the individual. Sorry, have no recent experience. Have you been referred to W.P.Hosp. which is near where we both live?
also been meaning to ask, how were your girls after their dental op?
All the best to you all xx

understand how he feels OJ. We have shut off from the hospice/counselling etc you just feel no one can actually understand what you feel. By seeing all these professionals associated with cancer, it makes the reality interfere too much with normal life and what you want it to be. My DH finds his oncologist extremely helpful. Perhaps the next appointment would be a good chance to honestly discuss the treatment, side effects and outcomes. Radiotherapy does make huge differences to improving the symptoms and survival so may be this appointment will help his thinking. My DH's treatment only lasted seconds. The biggest hassle was getting there, parking and finding babysitters. It is a huge interruption to the daily live you are trying to preserve but will show you benefits later. You really do have your work cut out in this situation.

we go to QMC,
the girls dental op was a nightmare, after sorting out overnight respite for DS and watching that the girls didn't eat or drink anything leaving the house at 7.30am me driving and DH on girl watch,we were just pulling into the hospital carpark DH didn't notice that they had found and eaten some choc minstrals i heard a crunching sound from the back looked in the mirror and saw chocolate smiles in stereo.
so we went into the QMC and explained and they sent us home, we have to do it all over again in may

i think the next appointment will be interesting, DH has severe memory loss and forgets that he has memory loss so will forget what has been said and will deny all of it, i will make notes.

Oh my god!! The little tinkers! And after it took so much organisation to get there..... but confess I had to laugh at the chocolate smiles in stereo I'm sure it didn't seem funny at the time though.
Hope you have better luck next time, and that things go well with your DH xx

i wasn't smiling at the time.
still at least we have had a practise run.
i feel sure that DH will be keeping a closer eye on them next time

still not heard from the hospital.
i may have to chase it up on the quiet as DH is happy to leave it.

Onlyjoking - just wanted to say best of luck. It is so difficult for the significant carer as the person who is going through it all gets the attention and you are trying to be strong enough for everyone. Thinking of you.x

Hi

I can't really offer advice on this, but, I have a friend who has recently had the same surgery (can't remove all of it) she is also starting radiotherapy soon.

Hi again - I was looking for something else and came across this support group (its in Canada but has chat room)

www.btfc.org/braintumour.nsf/eng/home

I found when my DH had an accident and had serious head injuries that chatting to people cyber style really helped.

Hi OJ,
It's well worth chasing up for that apointment, the NHS do a really good job but sometimes it's he who screams loudest gets seen first, the sooner you start the sooner it will all be over.
I know exactly what you mean about it being difficult to talk about in RL, for the longest time Mum would just cry everytime we mentioned my Bro. People just shy away, suppose they don't know what to say and don't want to make it any worse, can make you feel isolated.
Must admit I chuckled at your story about the chocolate smiles, little monkeys
Try to find joy and normality where you can, sounds like your kids are good at that!
Thinking of you

thanks radley, it doesnt sound similar.
i have bookmarked that web site and will take a look.
i will have a word with MIL and see what she thinks cos DH thinks no letter from hospital must mean he is cured, if only!
if MIL agrees then i will chase the hospital up on the quiet. it's ok shoving your head in the sand but meanwhile our life is on hold, DH can't drive or go on holiday, we cant plan anything.