Hi there Serendipity, I'm so sorry to hear about your dear brother. This is really a cruel twist of fate that he has been diagnosed with this terrible disease. I think those of you who are discussing this with his treatment team need to be clear on how much you're willing to put your brother through. Since he is unable to speak for himself and doesn't even understand likely what's happening to him, it would be wise for you, his family, to get together and get a clear idea of all of the information available on your brother's condition. Making decisions based on what is in his best interests seems the only humane way to go. It sounds like from what you've said here, that the prognosis is not very good. Starting with a family meeting with his treatment team would seem like a first step for sure. My heart goes out to all of you at this difficult time.

Come back on the forum and let us know how he, and all of you manage to get through this.

Lorraine  

Hi Lorraine thank you so much x

Thats exactly what we are going to do, we won't put him through any suffering but I am terrified if he has no treatment about how much the disease itself will make him suffer and I just cannot bear the thought of it. Right now he is still on heavy painkillers since the surgery and is happier than he has been for ages.

We are hoping he will have the CT scan and tumour marker re test done within the next 2 weeks once they can arrange the general anaesthetic etc. His tumour markers were raised on the day of his operation so I am desperately hoping they won't still be raised now as I know that means bad news.

He is unable to speak at all and has no understanding at all of what is going on which really is the only blessing.

We lost our mum in August 2012 to a cancer no one including her even knew she had (she went into hospital on the 29th Aug and died the next day, she was unconsious when we were told it was cancer and she never woke up) she was 64 and they were never able to find the primary, they just said it could have been a hidden skin cancer (but they never found it) that spread and they just called it carcinomatosis. I was pregnant when mum died and I was away so did not get to say goodbye, a week later we found out my baby son had also died, he was born asleep 3 days after mums funeral.

I just cannot believe my poor brother who has suffered more than enough is going through this

Helen x

Thank you so much and I am so please for you and your son. One of the problems with my brother is the cancer was left for a long time, the consultant thinks he has had it quite some time (as he was unable to let anyone know or even realise himself when the lump first developed. The consultant when she first told me the diagnosis on Tuesday was already talking about not giving him ANY treatment at all which is the big concern as obviously if it has spread as she believes then it will only be cured IF they do agree and we do of course to treatment.

Its all up in the air and terrifying right now, if he was not disabled in the way he is this would be less complicated but it adds so many other issues and sadly means its not even just our decision. But thank you so much it means a lot as I am not able to talk to my poor dad about this (hes really struggling) and mum is not here so its pretty much all on me. x

Hi Helen, my goodness, I've just read your previous post about your Mom dying so fast from cancer and then you losing your baby son 3 days later. How awful for you to have so much pain all at once then, and now, your brother being so ill and you Dad too upset to assist you. You have the weight of the world on your shoulders right now. My heart goes out to you.

I hope you get things worked out for your brother in the best possible way for him. Get all the information possible from his treatment team and perhaps it might help you to speak with the nurses here on the forum. They can't tell you what to decide, but they can clarify some of the information you get from his doctors and perhaps that can assist you with making some of these decisions.

Come back on here for support for yourself. As you can see, people on here are very caring and supportive.

Take care.

Lorraine

My brother is having a CT scan next Wednesday (18th Feb) and tumour marker repeat blood test under a general anaesthetic. They are then sending the results to the specialists at Bristol (my brother lives in a carehome in Somerset) who will discuss it at their weekly meeting and come up with options, then we all have to have a big meeting with his carers, consultant and oncology to discuss what happens next.

I asked his urology consultant how big his tumour was as they kept saying it was very large, she told me it was 9.5cm and that the tumour markers they found in his blood when they were removing the testi and tumour were HCG and LDH.

The CT scan is going to be of his abdomen and chest. I am terrified.

Hi again,

A chest and abdominal CT scan is normal which is done to see if there is any spread.  The raised HCG and LDH  levels (again which are quite normal with TC) would have been known before his op as they would have shown up in his blood test and I would imagine further blood tests will be done to see if the levels have gone down.  Was the tumour they removed 9.5cm?  My sons tumour measured 7cm and he's fine now after treatment.  I realise it's extremely worrying for you especially in view of your brother's disability but the CT and then meeting to discuss treatment do seem normal.  Look after yourself and try not to think about it too much as next week will be here and over before you know it.  All the best

Hi, hope you're okay.  Have you had the results of your brother's scan yet?  I hope the news was encouraging.  All the best

Hi sadly it was bad new, I heard on Monday his cancer has spread to his abdominal lymph nodes (he had ct last wednesday) they are now saying it is stage 2b. We have to have a big meeting in the next 2 weeks to discuss options. They want to give him a large single dose of chemo (he could not cope with the courses they normally give) they said he can have that under a general anaesthetic, the problem is they are saying this is not enough, he still needs several weeks of daily radiotherapy, but as they would not be able to give all that under general anaesthetic and sedation is not enough for him to cope its not really an option for him so we have to rethink. I am so scared