Retzuis Sparing v RALP

User

Posted 27 Apr 2019 at 16:40

Well its been a while since I posted - partly to give me a "break" from the cancer subject, and partly being selfish and trying to sort myself out a bit.

So what has happened ?

Good bits -

Met the consultant about 4 weeks ago - first PSA result was "less than 0.04" - I do not think it gets much better than that. I was hoping for "clear margins", but the consultant said that he could not say this, as he had to remove all the nerves on one side (as opposed to only some of the nerves on that side). However he was confident the op was a success, and the first blood test backs him up. Next PSA test 3 months later.

Not so good bits -

Having boldly stated I was dry, this has not continued to be the case. OK through the night and for the start of the day, but as I get tired I leak a bit. Most days one level 2 pad will do, and hoping for improvement.

I was also prescribed Cialis. I took one tablet (20 mg) on a Tuesday. Mild signs of action, but from the Thursday to the Sunday my back hurt so much I could not lie down in bed - spent three nights trying to sleep in a chair. Needless to say I have not taken anymore, but when I feel brave enough I may cut the pill in half and try again.

Thanks again to all on the site who helped me, and if anyone reads my post and wants to know more, just make a comment and it should alert me.

Here's to a healthy future for all of us.

Cheer

Mark

User

Posted 28 Apr 2019 at 09:30

20mg Tadalafil seems like a fairly big dose....... I thought 10 was the usual. That’s what I have and I cut them in half.....

Have to say though that I do wonder at the apparent popularity of tadalafil and sildanafil as both of them, especially the latter make me feel fairly unwell for 6 - 8 hours afterwards with symptoms somewhere between a migraine and a head cold, though never back ache.

They both work reasonably well, though in direct proportion to side effects. Thankfully I can mostly manage without these days.

Otherwise it sounds like you are doing pretty well. I’m sure the continence will continue to improve. Not sure the PSA anxiety ever goes away though......

Hope the recovery continues apace...... and tiredness making you leak is natures way of telling you to back off!

Nick

User

Posted 28 Apr 2019 at 11:07

20mg is the max for a single "session". Some guys say the side effects get better with time, I found they didn't 😟.

So 4 years down the line I am happy with my Durex ring and occasional Viagra (same effects but you don't get side effects all weekend!).

User

Posted 03 Jul 2019 at 19:23

Hello old friends (and not so old friends).

I have now had my second PSA blood test, being 6 months after my prostatectomy, and I am relieved to say the result is "less than 0.04 ug/L" - so that is good news.

It would be a lie to say everything is back to normal down below, but steady improvements over time is hoped for.

I hope everyone is in a good state of mind and hopefully has a reasonably healthy body to go with it.

Best Wishes

Mark

User

Posted 05 Jul 2019 at 19:06

That’s good news Mark.

The improvements do continue in my experience. The ED especially takes a while. Certainly I’m still seeing steady improvement one year on.

Nick

User

Posted 07 Jul 2019 at 20:58

Thanks Nick

User

Posted 29 Sep 2019 at 21:05

Hope my on line friends are all still in good health and making the most of life.

I have just had the latest PSA test results, being about 7 months since the op, and I am pleased to say the readings were "less than 0.04".

Best Wishes

Mark

User

Posted 30 Sep 2019 at 22:23

Hi Nick

I read one of your post on this blog, regarding how you have recovered from surgery with interest.

I'm 57, diagnosed in August with Gleason 3+4=7. MRI would suggest it's confined to the single organ.

I have decided to go for surgery, however I recently met with someone who, having gone down the radiotherapy/Hormone treatment route, was very scornful of surgery. He had done a lot of research, but I don't know from where he found his data. He suggested that success rates weren't as good as the stats claim and that 70-80% of patients suffered long term issues with ED and urinal control.

I suspect he might just be a little angry about the whole thing, so I wanted to contact some guys who have had surgery.

I am new to this site, so can't contact privately yet. Would you be happy to chat?

Regards

Mark

User

Posted 01 Oct 2019 at 07:03

Hi Mark

Your posts have been helpful and informative.

I am in decision making stage as to prostatectomy or Brachytherapy.

I have posted on the on line community but would value a one to one conversation and you closely mirror my situation and concerns.

Would you be happy to do so? Not sure how this is arranged.

Regards

User

Posted 01 Oct 2019 at 11:35

"He had done a lot of research, but I don't know from where he found his data. He suggested that success rates weren't as good as the stats claim and that 70-80% of patients suffered long term issues with ED and urinal control."

It is true that the stats can be misleading if you don't know the exact meanings of the phrases used. For example, it is widely known that 90% of men are continent 12 months post surgery ... the full fact is that 'continent' is defined as using one pad or less per day. Men who cannot wear light trousers just in case or who have a constant slight dribble can feel angry that 'continent' didn't mean quite what they imagined. Likewise, nearly 90% or men who had full nerve sparing RP can get an erection 12 months post op; what isn't always understood is that some of those men can get an erection alone but most will need either tablets, injections or a vacuum pump to do so and "getting an erection" is not the same as "getting an erection firm enough for penetrative sex"

The % likelihood for side effects of the two main treatments are broadly similar; the difference is that with RP they are mostly immediate but if you are lucky will improve over time. With RT they may be okay to begin with and then get worse over time (often emerging 5 or more years later). Add into the mix that HT side effects will be mostly immediate but many will improve once HT is stopped and you have much of a muchness between them all.

The best advice I have seen is: choose the treatment that gives you the best chance of full remission and then decide whether you are happy to risk the side effects. If not, then choose the treatment whose side effects you are willing to risk, accepting that you may not get remission. And remember that one side effect of treatment is getting rid of the cancer.

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

User

Posted 01 Oct 2019 at 22:25

Hi Grant60

I have sent you a private message.

Cheers

Mark Ja

User

Posted 02 Oct 2019 at 19:39

Hi Mark

Thank you for the private message. I apparently need to do a few more posts on the public forum before I can reply to your message.

I will be in touch asap. I have decided to stop the procrastination, make a decision and proceed with the treatment in November.

Cheers

Grant60

User

Posted 03 Oct 2019 at 12:40

Hi Grant 60

I’ve not posted enough to be able to DM anyone yet but looking at your posts my husband’s diagnosis is very similar ( he’s Gleason 4+4) I’ve read lots and lots of posts over the last month and he’s decided to go down the surgery route to hopefully get rid of IT. Also I’m aware that with only 12 biopsies done there could be more undiscovered cancer cells. My husband is 56 years and travels a lot with his job ( he runs two businesses) and likes to keep fit by cycling and skiing so is keen to get back to these things without the worry of the cancer spreading.

User

Posted 03 Oct 2019 at 18:53

from Lyn Above

"It is true that the stats can be misleading if you don't know the exact meanings of the phrases used. For example, it is widely known that 90% of men are continent 12 months post surgery ... the full fact is that 'continent' is defined as using one pad or less per day. Men who cannot wear light trousers just in case or who have a constant slight dribble can feel angry that 'continent' didn't mean quite what they imagined. Likewise, nearly 90% or men who had full nerve sparing RP can get an erection 12 months post op; what isn't always understood is that some of those men can get an erection alone but most will need either tablets, injections or a vacuum pump to do so and "getting an erection" is not the same as "getting an erection firm enough for penetrative sex""

3 months post RAPL. I find your post the most telling I have seen. I am slowly beginning to understand the language - I wish I took more interest before. I shall start a thread - "Erection or Improvement"

User

Posted 05 Oct 2019 at 10:41

Hi Gooders,

not quite sure which post caught your eye? There are pros and cons to surgery and the various RT methods. It’s also fair to say that each method has its enthusiasts and naysayers. Urologists tend to favour the surgical approach and oncologists RT.

All approaches have side effects in most men. For obvious reasons, the surgical approach causes immediate and marked side effects, which then improve over time. RT side effects tend to build with treatment time and can continue to worsen even long after actual treatment has ended. They may also affect other systems (bowel function for example), which surgery rarely does.

There aren’t many, if any, studies that provide a balanced comparison between surgery and RT. Not least because data collection between the two schools doesn’t seem to use the same parameters.

For me, the decision came down to the following factors.

The only RT option I was prepared to consider was brachytherapy and my very large prostate meant that it was only maybe possible after 3 months hormone treatment to shrink it.

I wanted the cancer gone (the only good tumour is the one in the bucket....)

My research indicated that at my age and stage and general health, my chances of making a near full recovery were very good - provided the surgeon was good - and I was lucky enough to be able to influence that.

Should surgery not be fully effective for cancer control the RT remains as a backstop.

15 months on it still seems like the right decision. Though my initial recovery was slowed by post-op complications, it has been pretty complete. Continence was never really an issue even early on (my definition of continence doesn’t involve pads or dark trousers) and progress on ED has been steady to the point that a small dose of tadalafil has been an optional performance enhancer only for at least the last 6 months.

PSA anxiety? No known cure, other than the temporary effect of a good test result!

hope this helps.....

Nick

Originally Posted by: Online Community Member

Hi Nick

I read one of your post on this blog, regarding how you have recovered from surgery with interest.

I'm 57, diagnosed in August with Gleason 3+4=7. MRI would suggest it's confined to the single organ.

I suspect he might just be a little angry about the whole thing, so I wanted to contact some guys who have had surgery.

I am new to this site, so can't contact privately yet. Would you be happy to chat?

Regards

Mark

User

Posted 06 Oct 2019 at 10:47

Hi Nikko

A good summary, and similar to my thought process.

Cheers

Mark

User

Posted 12 Oct 2019 at 19:10

I’m 60 years old and had a Retzius nerve sparing robotic prostatectomy on May 14th 2018, four blood tests later my PSA remains at <0.03. I’ve been continent (zero pad use) since the supra pubic catheter was removed 11 days post op. I recovered pre-op (full) sexual function without Cialis seven months later.

On the 9th March, three days after my PSA test I had an MP MRI scan. On March 12th the urology consultant confirmed PC. The radiologist classified it as T2b organ confined. Good news, as the cancer appeared to be contained within the Prostate capsule. Treatment options were reviewed but my immediate and unerring decision was to have the Prostate removed. A biopsy would confirm the diagnosis but I could see the cancer on the MRI scan for myself.

I met DC, my Surgeon in London on the 21st March. Incontinence, ED, the possibility of radiotherapy post surgery were all reviewed but there was never any doubt in my mind, removing the prostate would be the only way forward. A transperineal biopsy on the 3rd April confirmed the prognosis and a Gleason score of 3+4.

On the May 14th, 6 weeks post biopsy, I had a 3 hour Retzius nerve sparing robotic radical prostatectomy with 'on table’ pathology. The Retzius surgery technique is claimed to be less invasive and offers better nerve and continence outcomes. After my prostate was removed and whilst I was still anaesthetised, it was examined by a pathologist to determine if enough tissue had been removed to provide clear or ‘negative' margins. The surgeon subsequently removed additional tissue post pathology which thankfully proved negative.

I went home on the 16th May, returned on the 25th May to have my catheter removed and had my first erection on the 29th May and on the 31st May I had an erection sufficient for full penetrative sex using 5mg of Cialis - phew!

Since my operation I’ve had four PSA tests all <0.03. To date, I have not required further treatment.

As for bladder control, I have been dry since day 1 - no pads. I do still wake up in the middle of the night to use the toilet and during the day I’m urinating every 3-4 hours, sometimes less depending on how much coffee I’ve drunk.

By August I was riding my mountain bike and walking the hills again. By November 2018 I regained my pre-surgery sexual function without Cialis, might have been sooner from a physical perspective, but it’s all about confidence.

I’ve had a great outcome and it's definitely down to the skill of the surgeon I used. I’m happy to chat to anyone who wants to know more.

Edited by member 13 Oct 2019 at 17:14 | Reason: Not specified

User

Posted 18 Feb 2020 at 19:34

Hmmmm

I have been dipping in and out of the site but have not made many contributions as I do not think I could add anymore to the quality of the replies posted already.

But now I find my PSA result has "gone up to" 0.1 even though in theory it should be less, as I have no prostate to create any PSA .

Making me think a bit, hopefully unnecessarily, but any comments on what to do should the cancer return would be appreciated.

Cheers

Mark

User

Posted 18 Feb 2020 at 19:52

Hi Mark

Sorry to hear this and hopefully it’s just a random fluctuation. There are better informed folks on here than can give suggestions. From what I have gathered and have in the back of my mind if ever needed. Is firstly take professional ie urologist consultant advice. Usual appears to be involvement of an oncologist if repeated PSA tests comes back with a similar result. Next areas for me would be PSMA PET scan with a view to RT but I believe the PSAs need to be a little higher to be effectively defected.

Hopefully others can give better guidance and perspective.

Best

Edited by member 18 Feb 2020 at 21:46 | Reason: Not specified

User

Posted 18 Feb 2020 at 20:21

Firstly, ask for an actual print out of the result to confirm that they haven't just missed the < sign - some medical staff don't seem to know what it is or why it is significant. It is possible that your hospital lab has stopped doing ultra-sensitive PSA tests, as many have over the last couple of years.

If the next test in 3 months is also 0.1, ask your urologist or clinical nurse specialist for a referral to oncology for salvage RT (probably with HT). With a post-op PSA that went down to <0.04 and then rose over a period of time and positive margins, you are showing classic pattern for a recurrence in the prostate bed so RT can usually go ahead without waiting for the PSA to get high enough for a scan (which means allowing the cancer cells enough time to develop further).

Edited by member 18 Feb 2020 at 20:23 | Reason: Not specified

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

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