New and Anxious

That is a high PSA Kes256 and listen to the nurse. The hormone therapy starts working immediately but chase up the bone scan if you can simply because the hormone therapy does work straight away to reduce the lesion size.

Thank you, had a really nice chat with the haematology specialist nurse and he was amazing. He was the one that told us the PSA. He thinks the bone scan will be done Wednesday but waiting for appointment confirmation and then oncology after that. So just a waiting game atm x

Hi Kes 245

My PSA 220   Gleason 8  at start of this adventure and it had spread, not in my bones  though, sorry I don't do the tech stuff, left that to those who do.

We are all different but there are possibilities of longer than the predictions, I know as I'm one of them, on year seven of the unwanted adventure.

Can be  very difficult in the early stages, a positive mind set helps.  Just keep climbing the hurdles, all are climbable, some seem a lot higher than others.

I live an active life, doing nearly everything I did before.

Best of luck to you

tilly'sghost

Thank you, this makes us feel more positive. Not sure what his Gleason is, where/when will we find that out please? Where did yours spread to? It may not be in his bones and just lymph nodes but urologist thinks it is due to the amount of pain he is in 

Hi Kes256 , the biopsy should provide a Gleason score (something like 3/3 or 4/5), it indicates how much and how aggressive.  You should also have a TNM score and a PSA.  If you can add these to your own profile it saves repeating yourself and helps us to answer any questions.  You can see other peoples profile if they have added one by clicking on their name or avatar.  Please ask anything you want to know.  David

Thank you, I’ve update the profile. Just a waiting game now for further appointments 

Hi KES

My spread, was seemingly unusual, across my back and one in my neck area and the crotch obviously.

I actually had other tests with another branch of medicine, for a few months while starting the prostate stuff . I think this may have been because of a family history of various cancers.

We are all different, react differently and face  slightly differing treatments.

It was described to me, that the powers of good, discuss the options available after all the tests have been completed. they then decide on the best option for each case. 

Any kind of waiting  can be torturous. More so, in this situation, but if it needed immediate action the Nhs would generally become miraculously fast.

 I know this from a friends wife, who gained five years from the edge of the abyss.

Best of luck

TG

Please can someone help. OH has been sent a PIP form and a UC50 form (although he has a full time job but is off sick atm) as he may get extra help. But on the form it asks about treatment he will be getting in the future and rough dates(?) We expect chemo and radiotherapy but no idea when! What do I put or will the urologist or oncologist help when we see them? Any advice appreciated. No idea what we are doing as we’ve never been in this situation before. Thanks x

Hello Kes. I would urge you to contact a Macmillan financial advisor or someone used to filling them in to help you complete the forms. I spent some time volunteering to help people fill in this type of form and realised that there is a right way and a wrong way to do this in order to avoid delays and to get everything that you are entitled to. If you are expecting chemotherapy for metastatic prostate cancer then research shows that this is best started within 12 weeks of starting hormone therapy so I would expect it to be by the beginning of September. This will normally last for 6 cycles with 3 weeks between each cycle. As for the radiotherapy they will probably allow your husband a month after completing chemotherapy to get over it and then decide what type is most suitable unless they think that the metastases need a quick zap before chemotherapy starts.

Even if your husband is working full time . He can claim PIP. However You can't claim PIP until you have difficulties with everyday tasks or getting around due to a physical  illness  for three months  at least , and you expect these difficulties to continue for at least another nine months. Please contact your local MacMillan / cancer specialist nurse to support the completion of the forms as they know the right way to fill them in . 

maybe it was one of them who got the form sent out to you and awaiting you getting back in touch to say you have it . 

best wishes 

Liz & OH xxx