Hi, I have Bladder cancer stage 4 incurable. Male 64. I had gem/cis chemo in sept 2021 for 6 cycles until it nearly killed me. I have a radical cisectomy on Jan 2022. I had 5 cycles of immonotherapy in March 2022. I was shown clear in June 2022. Scans Sep 2022 & Jan 2023 shows it returning lungs, but mostly pelvic area. I am now being offered palliative care only. I was offered gem/carbo &/or radiotherapy. I very much do not want to go through the devastation of chemo again. I want some quality of life.One of the tumours is pressing on my poop tract & this is causing pain (between 3 & 6). I am taking paracetamol & oralmorf, neither of which seem to help. I have heard stories about people going for radiotherapy to relieve pain & then getting hit by far more pain than they had before. Is this a common thing?
Hi Coojee
Sorry i really do not have the answer.
I have had radiotherapy on my lungs, and it caused no problems for me.
Though at moment i am waiting to see if i will be starting it again, for the pelvis, as i have fractures, there and as i have osteoporosis as well, and they can not decided if cancer now or not.
Though if it turns out to be for me i will do the radiotherapy again. As i was told, that is what it may be.
Hope other come along to put their point over, every one is so different,
xx
Hi Coojee,
I have stage 4 breast cancer, which has spread to my hip and skull.
I had radiotherapy on my hip, with bone strengthing injections after. I have been told the tumour is still there but it is dormant for now the skull tumour is not doing anything either.
I would definitely have radiotherapy again, it was a bit sore a week or two after I had it done, but I don't have any bother from it now.
Chemotherapy has got to be the most awful treatment, I had 6 rounds of it, it really did make me wonder whether it was worth having as it made me feel so Ill.
Good luck with your future treatments, never give up, I know it's difficult but try to stay positive, there are new trials coming out all the time, and let's pray there is one for you out there.
I have inoperable cancer which has spread to the base of my skull. Palliative care only. They say that chemotherapy wouldn't help but I'm having radiotherapy in March. I only found out about the tumour in my skull when I saw the Macmillan nurse on Wednesday. None of the consultants mentioned it to me before! I wish you and everyone all the best for the future. Staying positive is so hard.
Hi AnnaMary,
My oncologist didn't seem to be too concerned with the one in my skull either, when I asked him about treatment his response was to leave it until it does something, his opinion is that it will outlive me.
Like you I am on palliative care, I can either worry about it or ignore it, I do try my best to ignore it as I don't have any indication it is there, it was found by accident on a full body scan, which the hospital rarely do.
Since chemo my breast lump has gone, I am left with the skull and hip tumours, and the hip only bothers me if I try to push it too far with walking.
Whilst I wish I didn't have cancer I consider myself lucky, there are a lot of cancer patients a lot worse off than me.
Try to look on the positive side, palliative is only another word for maintenance, your consultants probably didn't mention it because the felt it wasn't necessary until it became a problem.
Take care AnnaMary, you will be fine xx
Thank you for the positive message. You have an excellent attitude to the whole cancer situation. I'm going to try and forget all the negative stuff I've been told and concentrate on the positives instead. I'm being fitted with a mask on Tuesday and then starting 5 days of radiotherapy on 9th March. I'll see how things look then. Spring is coming and the crocuses are out. Keep well. xx
Aww bless you AnnaMary,
We have to plod on and so the best we can.
Good news that you start radiotherapy on the 9th March, it's really amazing the results you get. I only had one heavy blast on my hip, but my tumour is now on maintenance. One injection every 3 weeks, this seems to keep him sleeping quite happily.
As you say the crocuses are out and spring is certainly around the corner.
Luv,. Cindy
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