An unexpected diagnosis.

Steve had his catheter removed today and things are looking good. He's apparently stress incontinent atm but he's assured everything on the ultrasound looks healthy and he should be back to normal very soon.

He's seeing his surgeon a week tomorrow for his pathology results and his erection tablets and exercise pump. Hopefully we will be going out and celebrating next weekend. 

Great to hear the positive news. Continence is usually a challenge after the catheter comes out but as you say it will only get better. You should definitely celebrate!

Fortunately he doesn't drink!

He had a completely dry night last night (geez, I used to say this about my children :() and today he says he leaks a bit when he's walking. 

He is though, getting wakeup erections. He was getting them when the catheter was still in which was a bit alarming. Not sure if he's going to need a pump. 

We are back to see the surgeon on Friday to get the pathology results from the removed lymph nodes. Kind of dreading it as its all gone well so far. 

Also now in touch with Stephen Hammond (Minster of State for Health) regarding why the NHS aren't using IFS for men with PC. 

It is not that popular in the NHS because data has shown the results to be unreliable (not massively but who wants to be the surgeon who kept the nerves of a non-nerve sparing patient only to have recurrence?), it is expensive because the path lab needs to be available during the op, it is expensive because the op takes longer, there is a slightly increased risk of infection as the robotic arms have to be removed during surgery and then reintroduced OR new ones fitted.

In cases like Maria’s where the original recommendation was non nerve-sparing, having the opportunity of IFS is a massive positive. But not all men would need it and the NHS probably couldn’t afford it.

Not as well as we'd hoped. 

The IFS and the paraffin embedded tissue biopsies were totally clear of cancer which means the cancer from the prostate was cleared. However, out of the 16 removed lymph nodes, the two closest to the prostate both had tumors (one 6mm and one 7mm).

It could be, that when these tumors were removed, all of the cancer has gone but we won't know that until he has his PSA test. If the PSA test shows there is still cancer in the body, then its a case of finding out where it is. 

At this point we have to expect that he will be having some level of RT but not on where the prostate was.

Hi Francij, I don't honestly know. So much was said today that I was the one who couldn't keep up with it all. Its something we will need to ask... ty. 

One of the things he did say was, if the PSA is at all raised, then he would do a very specific scan called 'Prostate PET/CT Scan'. This scan works better than a normal CT or MRI scan and can locate, where in the body the cancer has re-located itself to. If it can't be found, then no RT would be given until a repeat scan could find it. 

Hi Maria,

Professor Whocannotbenamedhere found that two out of the fourteen of my lymph nodes he removed were cancerous, but nine months later, all five of my PSA tests have been undetectable so far. Lymph node involvement is a complication, but certainly not the end of the world.

Two oncologists have advised me not to have adjuvant or salvage therapies whilst my PSA is undetectable, and so I may just have got away with it, for now!

If there are future successive rises in PSA over months or years, I will elect for a Gallium-68 PET-PSMA scan to pinpoint any recurrence. It costs £2600 in London, £400 in India and £600 in Australia. There are hardly any facilities for it in Britain, but don’t forget, we are always told our NHS is the ‘best healthcare service in the world’! Renewing my passport just in case.

I hope you get the 2/3 rebate of the cost of your private procedure back from the NHS as was suggested might be possible. I think that should be routine. My surgery cost the NHS £14-15,000 anyway, so I think it should make a contribution to Steve’s.

Good news that there are signs of life down below, unlike in my own case. However, my GP has just helpfully prescribed some Alprostadil eye drops, a.k.a. Vitaros, which may work. A bit late for Valentine’s Day though!😉

Best of luck to you both.

Cheers, John.

Edited by member 16 Feb 2019 at 11:24  | Reason: Not specified

Thanks Francij, obviously I'll keep you updated.

Hi Bollinge, I didn't realize that about your lymph nodes. The surgeon wasn't (or at least didn't appear) overly worried about it and just suggested we would face this bridge if we came to it. Hopefully, like you, it was removed and hadn't gone any further. 

Interesting what you say about the Gallium-68 PET-PSMA scan. The specialist did mention a scan that was specific for PSA but not sure what he called it. Surely this sort of machine would be invaluable for people with metastatic cancer?

Its now been agreed that half of the costs will be re-inbursed but that was only made possible because the surgeon at Addenbrookes was kind enough to send a referral to his GP with the reasons for this being more appropriate surgery for a man of his age. 

Chris, you sound so much like Steve and although your journey is much further on than ours, I'm fairly certain he would be making the same choices you have (if he was in your circumstances).

Funny isn't it; we had medical insurance for years but always said, if its something really serious we go down the NHS route because the NHS have better and more advanced technology and facilities. Its now the opposite, with the private sector having the monopoly. Here in the UK we shouldn't be having to fight or pay vast amounts of money for the best treatment options, but fight we do.

I'll be watching your profile to see how you get on in May.  

Great news. Steve picked up his PSA results today and they are 0.03. 

He sees his specialist next Tuesday. 

Meanwhile, I'm going to Thailand for a couple of weeks to our youngest sons wedding. Steve wanted to go but his doctor has advised such a long haul flight at this stage would be risky. His words meant Steve was no longer insured :( This is something we have been planning for the last three years so we agreed that at least I should go. I feel a lot happier about that now I know his PSA results.

Good news , so pleased for you both . shame you have to go to Thailand on your own . Hope the wedding goes well .

Phil