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Leo Robot spares some nerves

User
Posted 04 Aug 2017 at 21:06

PNI, any positive margin and node involvement each indicate less chance of remission so to have all 3 is very concerning and T5 adds to this. As CJ says, they have offered him salvage RT but on a non-curative basis. John had PNI and despite salvage RT (curative intention) the cancer has recurred. CJ doesn't fancy the risk of side effects for limited gain but since John breezed through without any problems, he certainly doesn't regret giving it a go. You will need to work out with your medical team where RT would be targeted, what impact that might have on the likelihood of side effects and the % chance they will give you of it actually working.

Edited by member 04 Aug 2017 at 21:10  | Reason: Not specified

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

User
Posted 05 Aug 2017 at 18:39

Hi Chris,

My best wishes to you too. You've obviously had a much rougher ride than mine thus far.

My next hurdle is the PSA test at the end of the month, followed by a chat with my Cornish urologist.  None of the assorted scans I've had thus far have revealed any problems anywhere outside the prostate. Given that, I can't imagine which bit of me that's left he might suggest zapping with RT. It seems likely that HT will be on the cards for me in the not too distant future. How did you find the side effects?

Jim

Reality is merely an illusion, albeit a very persistent one - Albert Einstein
User
Posted 05 Aug 2017 at 18:57

Originally Posted by: Online Community Member

PNI, any positive margin and node involvement each indicate less chance of remission so to have all 3 is very concerning and T5 adds to this.



And there was me trying to be optimistic! You are of course being perfectly realistic, based on the reported stats. All of which takes me back to my point way upthread about the relevance of said stats to any individual, and me in particular. Whilst I await my next PSA test I'll peruse some more learned journal papers. Your link referenced the SPCG-4 and PIVOT studies, which I had come across previously, but there's plenty more where those came from!

Reality is merely an illusion, albeit a very persistent one - Albert Einstein
User
Posted 06 Aug 2017 at 20:26

It now looks as though I'll need to do a lot of T3b/N1/M? research over the next few weeks, but sticking with T2a/N0/M0 for the moment, here's another learned article about the ProtecT trial, this time concerning potential side effects of the assorted treatments:

Patient-Reported Outcomes after Monitoring, Surgery, or Radiotherapy for Prostate Cancer

The conclusions in brief:

The negative effect of prostatectomy on urinary continence and sexual function, particularly erectile function, was greatest at 6 months, and although there was some recovery, the effect was worse than in the other treatment groups over 6 years; however, prostatectomy was associated with no change in bowel function. At 6 months, the negative effect of radiotherapy with neoadjuvant androgen deprivation therapy on sexual function, particularly erectile function, was only a little less than that of prostatectomy, and bowel function, urinary voiding, and nocturia were worse in the radiotherapy group than in the other groups. However, there was then considerable recovery in the radiotherapy group for these measures, apart from more frequent bloody stools. In the active-monitoring group, sexual (including erectile) function and urinary continence and function were affected much less than in the radical-treatment groups initially but worsened gradually over time, as increasing numbers of men received radical treatments and age-related changes occurred; bowel function was unchanged.

No effects were observed with respect to general health status (mental or physical) or anxiety or depression in any treatment group at any time or in cancer-related quality of life at 5 years.

Reality is merely an illusion, albeit a very persistent one - Albert Einstein
User
Posted 07 Aug 2017 at 00:15

It seems the further extent of your cancer was not discovered until you had your surgery. Scans do not always show spread but better scans sometimes can. If the cancer whereabouts can be more precisely located, it could help with the configuration of the RT. You could ask whether a 68 Gallium PSMA scan or a Choline one is worth doing, although either of these would most likely mean your travelling to a hospital providing such scans.

Barry
User
Posted 07 Aug 2017 at 09:42

Originally Posted by: Online Community Member

You could ask whether a 68 Gallium PSMA scan or a Choline one is worth doing, although either of these would most likely mean your travelling to a hospital providing such scans.

If you inspect my profile you'll see that I've already had a choline PET/CT scan in Poole. It actually involved two trips. On the first one we already had a room booked at the RNLI hotel and were 2/3 of the way there when I got a call to say my appointment was cancelled because the radioactive choline manufactured that morning had failed quality checks. Fortunately a week later everything went according to plan.

To be frank, if I'd been offered the choice I would have much preferred to have the op ASAP after my biopsy, with the choline scan to follow.

How fast is Gleason 4+3(+T5) expected to grow? Is it conceivable that it could have invaded my seminal vescicle and/or lymph node in the month between the scan and the op?

Reality is merely an illusion, albeit a very persistent one - Albert Einstein
User
Posted 07 Aug 2017 at 10:16

The latest update concerning my ongoing John Thomas rehabilitation campaign (JTRC for short). The poor little chap is slowly improving, but is still rather tender. I've invested in a couple of Age UK washable bed pads, so that at least he can get some fresh air at night. I keep a conventional pad close at hand to ensure that no dribbles reach the carpet on my 3 or 4 nocturnal visits to the toilet.

I went on a short hike up a local hill yesterday. Pictorial evidence can be viewed over on Facebook, including details of the latest incarnation of my mobile incontinence pack. This now has pride of place in my rucksack and accompanies me everywhere.

I discovered that the Age UK pads for "Men" are clones of the Abri pads I received in my PCaUK post surgery kit. They have handy little flaps down the side that are just the right size to contain the smaller Abri unisex pads. On a long walk I set off with one inside the other. When the unisex one fills up just find a quiet corner and swiftly remove it and place it inside a blue Abri bag, also kindly supplied by PCaUK in their kit. If circumstances allow replace the inner pad with a fresh one. Repeat as often as necessary.

This procedure prevents poor old JT from getting overly soggy, and has the added benefit of deluding casual observers into believing that he is much larger than he really is!

Reality is merely an illusion, albeit a very persistent one - Albert Einstein
User
Posted 07 Aug 2017 at 23:08

Sorry, missed Choline scan already done as indeed shown under your bio.

Barry
User
Posted 08 Aug 2017 at 09:53

No problem Barry. Thanks very much for your continuing assistance.

Following my "coming out" on Facebook I discovered that an old Facebook friend (FF for short) goes cycling in support of PCaUK. The resulting temptation was too much to resist, so I cycled up a local hill in celebration of the one month anniversary of Leo's snipping of my innards. I employed my patent pending dual pad urinary incontinence solution, and consequently my "lunchbox" was far more impressive than those of the guys in lycra (IMHO!).

Before the ride I lowered the front of my razor thin saddle by several degrees. When climbing a long hill I employed "granny gear", carefully avoided pot holes, and ensured only my backside was ever in contact with said saddle. Most of the time I just stood on the pedals. In the apparent absence of a way of posting pictures in here please feel free to peruse:

https://www.facebook.com/SoulSurfer7/media_set?set=a.10155471643774976.1073741863.743149975

Reality is merely an illusion, albeit a very persistent one - Albert Einstein
User
Posted 08 Aug 2017 at 14:09

The advice is not to cycle after RP as it inhibits the likelihood of regaining erections. Bit pointless searching out a surgeon willing to do nerve-sparing surgery and then negate this by engaging in activities that make recovery less likely. Your risk of hernia is also much increased by overdoing things so soon after the op. John's surgeon banned cycling for 7 months which at the time was very hard for him but he regained normal erections so was worth it in the end. If you are intent on cycling, at least purchase a prostate-friendly saddle (with the hole in the middle)

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

User
Posted 08 Aug 2017 at 14:13

PS I am not sure it is necessary or a good idea to attach links to your social media pages. Since this online community was redesigned a couple of years ago, all posts are searchable by non-members which has caused some problems including an increase in spammers, scammers and trolls.

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

User
Posted 08 Aug 2017 at 16:01

Lyn - I'm already achieving a passable imitation of a "normal erection" without the assistance of any pills, potions or pumps. You'll be the first to hear if I notice any deterioration as a result of yesterday's impromptu performance. When time allows I will certainly look into the purchase of an alternative saddle for my "hybrid" bike.

If links to Facebook are deprecated what is the accepted way of incorporating an image (or a link thereto) into a post on here?

Reality is merely an illusion, albeit a very persistent one - Albert Einstein
User
Posted 08 Aug 2017 at 16:41

I can't think of any current member who incorporates images in their posts, with the exception each June of a set of photos of the annual get-together in Leicester. Under the old rules we were not permitted to include that kind of thing - no idea what the rules are now.

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

User
Posted 10 Aug 2017 at 09:05

Lyn - I emailed "The Management" about the images issue yesterday. I haven't heard back beyond the "automatic reply" yet though.

I also spoke to one of the wondrous PCaUK nurses about a variety of topics, including the controversial one of post op cycling! The recommendation was no cycling for 3 months. The word "hernia" was mentioned. Apparently previously active men have a bad habit of "pushing through the pain barrier", which is a really bad idea!

I reassured said nurse that in my recent case I was actively trying to avoid any pain of any sort, and I certainly didn't "push through" any of it! Gentle jogging was suggested as an alternative. I neglected to mention that I have a dodgy left knee as a result of an old football  injury. That's one of the reasons I gave up trying to stand up on a surfboard several years ago. I fear even "gentle" jogging might cause it to flare up again, but perhaps I should invest in some expensive running shoes before I buy an expensive "prostate friendly" saddle?

Reality is merely an illusion, albeit a very persistent one - Albert Einstein
User
Posted 10 Aug 2017 at 09:15

Prostate-friendly saddles aren't necessarily that expensive and if you live another 20 years you will get your money's worth.

Posting photo links may not be against the rules now we have a more up to date platform but I would still question why do it, when we are all strangers really and trying to maintain some anonymity - any member of the public idly googling what we all talk about can immediately find out who you are, where you have been, etc.

If you look at some of the older threads when we were all negotiating the terms & functions of the new forum, the universal horror was that we would be inundated with each other's holiday photos :-/

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

User
Posted 13 Aug 2017 at 21:07

My new Facebook Friend John has been posting his post op experiences for the entire known Universe to see. I have no qualms about doing likewise.

His op was a couple of weeks after mine, and I was intrigued to discover that upon removal of his foley catheter he was immediately supplied with an external sheath catheter. The information he shared proved very useful to me, because I discovered on Friday that I need to give a 2 minute business presentation in Brum on Thursday, in the middle of a 4 1/2 hour conference.

I hastily called my GP and I am assured that I will shortly be able to pick up a supply of such sheaths from my local Boots. Hopefully tomorrow!

Reality is merely an illusion, albeit a very persistent one - Albert Einstein
User
Posted 22 Aug 2017 at 13:14

My business presentation last week didn't go entirely to plan. The test run a couple of days before the big day went smoothly enough, until I arose in a daze in the small hours of the following morning and headed to the WC to be on the safe side. I habitually released ~500 ml in a fast flow which resulted in a rapid expansion of the sheath in an excellent impersonation of a water filled balloon. If there is a next time I will make sure that the bag is not attached to the sheath by the time my highly trained pelvic floor muscles are released!

On the day itself I went to the WC in the break before my two minutes of fame in order to empty my leg bag. I noted in horror that the sheath had come loose! Fortunately I had some spare pads with me, the thinnest of which was hastily inserted into my underpants. In the event it seems nobody noticed my dark secret, and several people complimented me on my all too brief presentation.

Yesterday a Coloplast representative called me in response to my initial enquiry. She was very helpful and suggested that my hastily concocted routine would benefit from the subtraction of a conventional wet wipe and the addition of a "prep wipe". Samples of all sorts of stuff, including sheaths of varying sizes, are in the post to me as we speak.

Reality is merely an illusion, albeit a very persistent one - Albert Einstein
User
Posted 29 Aug 2017 at 16:41

My first post op consultation is this coming Friday.

My first post op PSA reading has just come in at < 0.03 ug/L.

Do you suppose I'll be able to persuade the consultant to forget about hormone and radio therapy for the foreseeable future?

Reality is merely an illusion, albeit a very persistent one - Albert Einstein
User
Posted 29 Aug 2017 at 18:52

Fantastic first post-op PSA reading. You lucky fella! Keep the good luck going!

AC

User
Posted 29 Aug 2017 at 21:11

Thanks AC,

I have to admit to being pleasantly surprised. I'm sure I've read somewhere that it can take a while to reach PSA nadir, but maybe that was after RT rather than the radical robot?

I now have my fingers (and especially my legs!) firmly crossed before Friday's trip to Newquay.

Jim

Reality is merely an illusion, albeit a very persistent one - Albert Einstein
 
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