My poor brother

Hello, I am new on here so want to start by sending hugs to anyone here who needs one.

My older brother Alan is 42 but has very severe learning difficulties, he lives in a care home in Somerset.

After having an operation 2 weeks ago to remove his massively swollen testicle they told me this week that he had a very large tumour and after pathology tests it has been confirmed as testicular cancer, the letter I then recieved referred to it being a pT2 Seminoma. We are now waiting for the hospital to arrange for him to have a CT scan and repeat the tumour marker blood tests, but due to Alans disability it has to all be done under a general anaesthetic as he will not cope with it even under sedation.

I am utterly heartbroken and totally terrified as they are saying there is a big risk the cancer has spread its cells via his blood stream and lymphatic system even though they said when they removed the tumour they cut the cord as high as they could and found no other tumour on it.

Any advice, ecperice or words of wisdom please, our big fear is that if it has spread there is a very real possibility of treatment not being an option due to how he would suffer (for example chemo would have to be given under general anaesthetics every time too and side effects etc.

  • Hi , so sorry to read your latest post, no experience in this area, all I can say is I am thinking of you and your family,.

    Kathy xx

  • Hi, I'm sorry to hear that and I realise how difficult this is because of your brothers disabilities.  At stage 2b (my son was 2c) the cure rate for TC is over 95% but, as you have said, your brothers ability to cope with the treatment is the tough part.  I sincerely hope the doctors can come up with a treatment plan that he is able to cope with.  My son had 3 cycles of BEP chemo over 9 weeks and no radiotherapy.  The first week consisted of 3 days on a drip receiving the chemo whilst an inpatient and the 2nd and 3rd weeks of each cycle was 1 injection of chemo (after a blood test) which took about 10 minutes as a day patient.  I wish you and your brother all the very best and if you feel able please let me know how you are both doing x

  • thank you for that, your poor son, quite an ordeal bless him.

    We have just been we need to come to a big meeting at my brothers local hospital this Friday March 6th, with me, my dad, my husband, my brothers carehome carers, his oncologist, anaesthetist, his urology consultant to discuss whether there are any possible treatment options and if not what will be done to make sure he is comfortable. He has just been put on Tramodol as his pain has got really bad.

  • An update!!

    We are on the worst type of rollercoaster. Just over a week ago we had to attend an awful best interests meeting for my brother, it was decided at this meeting that treatment would not be fair on him as it would involve more than 20 general anesthetics to give him all the doses of chemo and radiotherapy his cancer would need, we were told this would then mean my brother would have a year max to live. I was devastated, then the Bristol Hospial who are over seeing everything and advising my brothers local hospital had another meeting themselvse last Friday and then phoned me, I was expecting them to agree with his local hospitals view of palliative care being the only kind option, but they have said there is a chance he could have a single high dose of chemo followed by a single high dose of radiotherapy! but his local hospital have said they cannot provide radiotherapy in this way so now I am left desperately hoping that the Bristol hospital will be willing to basically put their money where their mouths are and give him the treatment themselves. Another difficulty will be transporting him there as he does not cope well with long car journeys and would need sedation to get him to hospital and keep him calm enough to have a general anaesthetic (he cannot even have a blood test without a general anaesthteic) I am so scared to hope!