LATEST PSA SHOWS RISE

But my mind can't get past the thought that he doesn't have a prostate. So the PSA should be undetectable. And it's been detected, however small the quantity :(

Even if this is a blip, I shall never be so confident again.

Latest reading is 0.06, and the consultant has swung into action. OH has to have MRI and bone scan, and assuming they are negative (not assuming anything anymore), salvage radiotherapy.

So there's questions coming...

Has anyone else been in this situation after 18 clear months post surgery?

Anyone had radiotherapy who can tell me about the side effects? OH asked me if he'd lose his hair. I said I didn't think he'd lose his head hair, but wasn't sure about the rest...?!

Can he still be 'cured', or will he always have prostate cells now? Will the radiotherapy lkill all the cells in the prostate bed area, or is it likely some will be left behind??

The consultant did say that because of the highly aggressive nature of the tumour, it was always a possibility, even though they were fairly confident they had it all.

I feel very sick tonight.

To be fair to the surgeon, it might just be our interpretation. It certainly wasn't something we expected after being told that the surgical margins were clear, but maybe we were just naive.

He did however say today that in now way should we regret having surgery. OH tumour was easily the most aggressive he had operated on that year, and that there was evidence that the more aggressive the tumour the less effective RT was in the long term.

He has indicated that he believes the PSA is probably coming from cells in the prostate bed. He says he will be 'absolutely astonished' if there is anything of note on the Mri or bone scan.

He hasn't mentioned HT- would it be usual to be offered this with such a low psa?

I've consulted dr Google, and he seems to be saying that the earlier you can have salvage RT the better your chances, which is what the surgeon said. Although we've only had two increases, and they are tiny, he says there is no point waiting. We concur!

I do wonder if the OH had taken the offered RT after surgery, we could have avoided this. We'll never know. I'm just a little frightened that, having taken 20 months to get to an almost acceptable level of continence (one pad a day) it is all going to go pear shaped again.

I think you're right. I haven't been on here since the bad news in May...

L

John refused to accept that he needed salvage treatment so we waited until there had been a succession of rises - 2 years post-op and I think the PSA had risen to 0.16 or something like that but he had had time to recover physically and emotionally from the initial diagnosis and operation.

Lyn- no, they've not asked for a psa, but it will be less than a month since the last one so maybe this is why.

We were offered RT after the surgery because of the high Gleason score 5 +4, but decided not to take it. They were confident the surgical margins were clear. A mistake in hindsight?

Is there anything we can do to reduce the likelihood of ED as a result of RT?

What advantage would there be to HT? I thought that this was only for those with a prostate. I am so ignorant, even now!

Chris- they might be waiting a long time if they have to wait for full continence!! The surgeon is very proactive, and feels there is a pattern of rising psa, and it needs to be treated. He feels the sooner this is done the better, and we tend to agree.

Kevan- no, the issue hasn't been raised because I didn't know it was an issue. But it will be top of the questions list, thank you! I'm sure he's continent enough to manage a full bladder. His incontinence tends to be stress incontinence and is worse when he's tired. He has a very physical job. When he does nothing, he barely leaks.

Thanks for your input everyone.

I've tried to send you a PM to see how you went on, but my phone is not playing ball.

Hope all went well for you x

I think you are overplaying the significance of the negative margins Chris. There does not have to be a positive margin for microscopic cells to have been left behind in the prostate bed.

Yes microscopic cells left behind. Logic would dictate these cells would be in your prostate bed , but in fact you're getting munched up down there and eventually your prostate is dragged past your bladder and out of your tummy button etc. I guess that's why 40% or more of men who have salvage RT go on to have further recurrence within 3 years. I guess they offer it because essentially in this present day it is your only option for cure after a biochemical failure post RP. As well as immunotherapy progress with various cancers , my Onco insists the real future of curative prostate cancer treatment is by huge advancements in imaging , whereby exact location of disease can be found and treated rather than blanket RT or systemic HT and chemo. I guess I'm " lucky " enough ( tongue in cheek ) to have such a poor , rapid doubling psa post op that I get to try these scans and maybe , just maybe , find a single lymph node somewhere that can be treated and provide a cure , whereby if I'd gone for prostate bed RT it may have completely missed it etc

I'm not sure these scans are developed enough yet to find small psa producing tumours , but they are advancing all the time. I guess to be fair you have no other choice Louise than to go for the SRT , but you are the original squeaky wheel !! Raiden has had three rises and is now 0.11 , but he is waiting and not putting himself through RT until it rises further. We all different yeh ! Best wishes x

This gets confusing, I was replying to the post from Louise.

Thanks Chris

And either we weren't told this or we didn't pick it up. As far as we were concerned, pathology gave clear surgical margins so everything was all clear and no RT was required.

I wonder if it would have changed our opinion if I'd understood this?