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User

Posted 17 Feb 2017 at 06:26

Hello to All.

My husband was diagnosed with low grade localised prostate cancer 2 and a half years ago at 50. We have been hopeful that it would stay that way but were a bit shocked when recently told it would need treatment very soon.

He is not dealing with it well and I just need a bit of help to understand and help him get through this and out the other side.

User

Posted 17 Feb 2017 at 10:04

Hi Boo, you need to give us a bit more of the story. Things like what was his PSA up until recently, what has it now risen to, has he had a biopsy and if so, what Gleason and stage numbers was he given (eg a result that looks something like G6(3+3) T1 N0 M0) - if you don't have that information, the GP will have received a letter from the specialist with it all.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 17 Feb 2017 at 16:17

He recently had an MRI followed by his second biopsy which showed all 10 cores bilaterally involved, from 3/4 cones at the first biopsy in early 2015. Gleeson is still the same at 3+3=6 adenocarcinoma of prostate with perineural invasion.

He has been offered robot assisted radical prostatectomy and radiotherapy or the PACE trial. I am currently looking around at other specialists around the country and am gathering as much information as possible on side effects, efficacy and success rates for the different treatments.

The final decision will be his of course but I need advice on how to support him through this difficult time and help him come to terms with his diagnosis and look forward in a more positive way.

I would be happy to hear from other wives and also from men who can give me an insight into what he is feeling and what support he needs

Friends and family have been kind and the healthcare professionals have as many opinions as there are treatments. The consensus seems to be have surgery and get rid then there is nothing to worry about, complete cure, get on with our lives but it is not as simple as that.

User

Posted 17 Feb 2017 at 17:39

I am shocked that he was allowed to go onto active surveillance with perineural invasion - statistically, that significantly reduces the chance of cure as so many men with PNI turn out to have more extensive disease than anticipated. If I read you correctly, they have advised that he have the surgery but will still need adjuvant RT afterwards? If so, they don't believe the op is going to get it all in which case your decision is quite easy - he will presumably be unsuitable for brachy or any of the newer (fairly untested) options like cryoknife or proton beam therapy. If he is being directed towards surgery + adjuvant RT then the debate is does he want to go through surgery in the hope it debulks the tumour and leaves only a bit to zap OR is the surgery now a pointless exercise with unwanted side effects and the RT can hopefully zap it all.

If you meant that he has been offered surgery OR radiotherapy then the above still applies in a way. How will he feel if he has the op and it fails to get everything because of the PNI? On the other hand, could he cope with RT and having to wait years before he knows for sure that it worked? As someone whose husband's op failed, I know he bitterly regrets the unnecessary side effects since he had to go through the RT/HT process anyway. Much will depend on how long he needs to be on HT (it may be 2 or 3 years with radical RT) but as little as 6 months (or even none) with adjuvant RT.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 17 Feb 2017 at 17:44

Just an afterthought. You mention that you are gathering data on the efficacy of different treatments. Make sure you are comparing outcomes for men with PNI which are rather different to outcomes for men with early diagnosis T1 / T2 etc. In your shoes I would feel that the potential side effects have to be weighed against the PNI.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 17 Feb 2017 at 21:11

Welcome to forum.

Firstly to reinterrate Lyn can you post more background information over the last 3 years etc. as it will give people a better understanding of your journey so far.

Have a look at member profiles. These can give you up to date experiences. . compare apples with apples etc and steadily build up your knowledge of the jargon.. . everyone is unique .

Gordon

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