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User

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.

User

Posted 25 Jan 2019 at 20:22

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

Phil

User

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.

User

Posted 07 Feb 2019 at 17:58

Good news , go on and celebrate.

Phil

User

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!

User

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!!

User

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.

User

Posted 08 Feb 2019 at 19:07

Sounds like he won't need anything!

User

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.

User

Posted 13 Feb 2019 at 19:07

What’s IFS?

User

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

User

Posted 14 Feb 2019 at 04:10

Originally Posted by: Online Community Member

What’s IFS?

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

User

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

User

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.

User

Posted 15 Feb 2019 at 00:04

Good luck on Friday!

User

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

User

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.

User

Posted 15 Feb 2019 at 19:01

Fingers crossed you get a "less than". Will it be supsensitive PSA?

User

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.

User

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

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