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An unexpected diagnosis.

Posted 25 Jan 2019 at 19:44
Thanks Goalhanger and Francij. We are home now and although he's a bit tired, he's doing a lot better than I expected so soon after surgery. Back in two weeks to have the catheter removed and in three weeks for the results of the lymph gland biopsies.
Posted 25 Jan 2019 at 20:22

Thats great news . Hope it all works out for you.


Posted 07 Feb 2019 at 17:43

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. 

Posted 07 Feb 2019 at 17:58

Good news , go on and celebrate. 


Posted 08 Feb 2019 at 10:31

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!

Posted 08 Feb 2019 at 12:16
That's a great result, remind him to be careful with alcohol, first time I got pissed with my then new girlfriend I did get pissed!!! The combination of booze and passion seems to undo all the good work!!
Posted 08 Feb 2019 at 15:13

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. 

Posted 08 Feb 2019 at 19:07
Sounds like he won't need anything!
Posted 13 Feb 2019 at 18:58

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. 

Posted 13 Feb 2019 at 19:07

What’s IFS?

Posted 13 Feb 2019 at 19:18
It’s getting sections of the prostate inspected by pathology during the operation, to help inform the surgeon on how much to remove. I suspect the NHS has other priorities for any extra little bits of funding that might appear - like developing a better test than PSA or giving more men access to a free PSA test alongside the total PSA. Or even making sure that every hospital urology department has a scanner that meets the RADICALS standard / replacing the scanners that have been declared obsolete in the recent national review.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

Posted 14 Feb 2019 at 04:10

I call it ’real time biopsy’ - can’t remember what the acronym stands for - done, I believe in only a handful of UK hospitals, mainly private. There is a pathologist on standby during the prostatectomy, and any suspicious prostate sections found are examined there and then to check if there is any cancer present. If not, they can be left in-situ. Clearly an advance in technology.

My friend who lives in the Virgin Islands and who has spent years in the sun, has numerous cancerous and pre-cancerous skin lesions for his trouble. He has just been to a specialist skin cancer dermatologist who is also qualified in skin cancer pathology, so she takes a slice, checks it under a microscope, then another slice until normal tissue is found. It took five slices off his nose to get back to ’good ground’ and he was there all day! Usually only two or three slices are required. God knows how much it cost him and he had to go back the next day for a similar procedure on his back.

Fortunately he had a big nose in the first place, despite several cosmetic rhinoplastys, so he still looks OK 😉.

Cheers,  John.

Edited by member 14 Feb 2019 at 09:24  | Reason: Not specified

Posted 14 Feb 2019 at 10:35
Prof Whatsisname may do it that way. In the rest of the PCa world, it is a newish technique (last 10 years or so) for cases where it is unclear whether nerve-sparing is possible ... tiny samples around the area where the nerve bundles sit are removed and sent to pathology for inspection (this is where the freezing comes in - the sample is set in wax, sliced and frozen).

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.

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

Posted 14 Feb 2019 at 15:23
Hi Ulsterman,

Its called 'Intraoperative Frozen Section Biopsy' and has been used with positive results for a good number of years on women with breast cancer. Radical mastectomies have become a rarity and even mastectomies have been greatly reduced to lumpectomies. It is also regularly used for people with bowel cancer.

IFS is a difficult procedure that is based on judgement, experience and knowledge. What it provides for the surgeon is a rapid diagnosis, but regardless of that, the paraffin embedded tissue technique is also used as back up.

We were told that if any part of the tumor was difficult to diagnose, then more tissue than possibly necessary would be removed. The final decision is always with the pathologist and not the surgeon.

The operation does take longer but on average, that's by 20 minutes.

Speaking to the NHS PC surgeons at Addenbrookes, they have been campaigning to make this procedure available for sexually functional men who have locally advanced PC. The trials were very positive and that's why the private sector picked it up so quickly.

When I spoke to cancer research about this, they were very excited about the positive outcomes and said it was taking longer to reach the NHS (at least for PC) than they had hoped but that it would eventually be implemented as an NHS procedure.

Steve was told that he would have everything, including the entire nerves removed by his original potential surgeon.

The surgeon he used did use IFS but said that the cancer was sitting well beneath the nerves and he could see even when he went in that most of the nerves could probably be saved. Along with IFS he had over 80% of the nerves spared.

We obviously need to see the surgeon tomorrow and who knows what we are going to be told.

Posted 15 Feb 2019 at 00:04
Good luck on Friday!
Posted 15 Feb 2019 at 03:08
Hi, I've just joined and your conversation is the first I've read. Fascinating to hear about IFS, it certainly sounds like an advance in prostatectomy techniques.

Too late for those of us who have already had surgery. Mine was 7 years ago.

Maria, I hope the results you get, (or got), today are good.

It sounds like things are going well and Steve is being well looked after.

His experience is similar to my own in that there's good indication that incontinence and ED can and will be overcome.

Since my surgery I can say I have sufficient confidence with these two to have remarried. Third anniversary in May!

I would say that it's early days for Steve and it can be a bit of a Rocky road. Confidence can be a problem and Steve should take any help or assistance offered. I wished I'd started on the pills and used the pump earlier, I think my road would have been less rocky.

One thing you may find, which is although things might turn out well, they'll never be quite as well as they used to be and success in one thing may cause issues with another.

Forewarned is forewarned and I hope Steve has been warned about the possibility of climacturia.

As I said, this is my first contribution on this site, I hope you found it helpful

Posted 15 Feb 2019 at 18:20

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.

Posted 15 Feb 2019 at 19:01
Fingers crossed you get a "less than". Will it be supsensitive PSA?
Posted 15 Feb 2019 at 20:02

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. 

Posted 15 Feb 2019 at 20:51
It may be worth you reading my profile Maria. Click my picture. My psa was tragic post surgery and continues to be so nearly 4 yrs on. Yet I’ve had every scan including Choline PET and PSMA PET. Still no definitive sign of spread although Psa 82 now. RT continually offered yet no clear evidence of spread in my prostate bed either. They say it wouldn’t be cure as I had 5 of 18 lymph nodes removed cancerous , so I don’t want it. Just recently indicators of spread higher up , so RT wouldn’t touch that anyway. Did I leave it too late ?? Who knows ??

If life gives you lemons , then make lemonade

Posted 15 Feb 2019 at 21:13

Hi Chris, believe me, I've read your profile over and over, including tonight when I got home. I fully understand why you haven't had RT. If they can't pin point where the cancer is, what are the chances of RT getting it? 

This is exactly what Steve's specialist was talking about today. He said that its sometimes not possible to find where the cancer is and he would be very much against RT in a that scenario. RT is meant to target the cancer, not randomly take aim and hope for the best.

On your profile you mention two suspect lymph nodes in your back but then go on to say they won't zap these lymph nodes. Why is that?

BTW I think you are incredibly brave and matter of fact about what's happening. I also agree with your choices. 

Posted 15 Feb 2019 at 23:54
Maria B

Sounds like you have a cutting edge urologist.

Sure you have read it already but Ulsterman has has his residual cancer found by PET scan and treated with RT. Fingers crossed you have a USPSA test and it's unfetectablr. Hence you won't need further treatment.

Posted 16 Feb 2019 at 01:33

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

Posted 16 Feb 2019 at 08:22
Hi Maria

Those are questions for the next meeting end of May. Yes in some hospitals they can remove lymph nodes or use a very focal RT beam to zap them ( cyber-knife). I’m guessing because I won’t just lay on my back with my legs in the air and be randomly zapped , then they won’t offer more expensive stuff. I did have some positive margins by my bladder so I guess they want to treat those. I’m sick of talking about it tbh. One step at a time.

If life gives you lemons , then make lemonade

Posted 16 Feb 2019 at 19:23

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.  

Posted 16 Feb 2019 at 20:03
There are various scans for secondary tumours that have spread from the prostate with different ‘tracers’ (or dyes), often involving radioactive isotopes as a dye to locate distant metastases.

Thus if it comes to it, the radiologist should then know exactly what to blast with his ray-gun rather than a scatter-gun approach, irradiating the whole region.

This whole area of nuclear medicine is fast-growing, and different tracers are being tested all the time. Old Barry seems on the ball with them, and I now get almost daily urological updates intended for medics, if I can bother to read them all.

The consensus is that a Ga-68 PET-PSMA is the most accurate scan around now. Less accurate Choline scans are generally available on the NHS. Let’s hope that Steve and I never need one!

Cheers, John.

Posted 23 Mar 2019 at 16:38

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.


Posted 23 Mar 2019 at 17:32

Maria that is wonderful news!! I can imagine how happy you both are!! heres to the rest of your lives having undetectable PSA!!!



Posted 23 Mar 2019 at 18:18

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


Posted 23 Mar 2019 at 23:10
Thanks Michaela and Phil.
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