My first post. Some initial thoughts on my recent robotic radical prostatectomy.
A bit of background. All the medics tell me "You're young and fit". I tell them all "I don't feel that way!". In actual fact I'm 63 1/2, and enjoy cycling and bodyboarding, amongst other things.
I consulted the oncologist in Truro last week. He told me that I'm "high risk" but I have a choice of two treatments offered with "curative intent". Radical prostatectomy, or 3 months of hormone therapy followed by HDR brachytherapy followed by radiotherapy followed by 2 more years of hormone therapy.
I consulted the surgeon in Bristol on Tuesday. I tell him I don't much fancy 2 1/2 or more years of hormone therapy. He tells me I'm "high risk" and that therefore nerve sparing is unfortunately not an option in my case. He tells me to sleep on it and call back in the morning. I call to agree to the procedure.
On Friday morning the surgeon explained that if things look good he might be able to spare one or two "main nerves", but not the complete "skin of the onion". I say "Yes please!". Then I was introduced to the Da Vinci robot in the operating theatre and was slightly surprised to discover that I was getting an epidural as well as a general anaesthetic. Less than 24 hours later I was eating breakfast back at my hotel, with 2 nerves spared.
One tip. When they offer you a sip of water as you come round don't do what I did and take a long suck on the straw while still lying flat on your back. I nearly drowned there and then!
Now I'm back home sat in front of my computer again, having injected myself with Clexane last night. The wonders of modern technology in the modern NHS?
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
Hi Soulsurfer
You can never tell how the incontinence issue is likely to pan out. As you appreciate some guys have no issues, others never gain full control and possibly the majority are somewhere in between. I stocked up with pads and found that after a week I was dry at night. It took me about 5 months to regain almost full control but even now coughing or sneezing makes me leak a bit. It's no big deal and hasn't stopped me from doing anything.
You might be lucky, so fingers crossed.
I did find that I used to leak a lot when walking so I used a Conveen sheath and leg bag which was brilliant when walking in the Brecon Beacons and Black Mountains as I didn't have to change pads and I found it very comfortable.
Anyway all the best with your recovery but don't rush things.
Kevan
User
I have been taken to task elsewhere for saying "It does seem strange that the experts can't agree on a recommended course of treatment, and that at the end of the day things come down to tossing a metaphorical coin."
Perhaps I should explain my remark further? Firstly I'm certainly not suggesting literally tossing a physical coin to decide on a course of treatment! However many moons ago I was a University researcher. Engineering, not medicine. I figured I'd do a literature search before making a choice between the options offered to me. Robotic radical prostatectomy, or 3 months of hormone therapy followed by HDR brachytherapy followed by radiotherapy followed by 2 more years of hormone therapy.
So for someone in my position what are the odds of a) a cure, and b) ongoing side effects? It's rather hard to tell! It seems I'm eligible for prostatectomy because I'm "young and fit". Does that skew the results of the available studies? Does being "young and fit" improve one's chances of a successful outcome following radiotherapy compared to the overall average for example? The answer to that question is not readily apparent in the literature.
Going into my op I had zero urinary or erectile problems. That's certainly not the case now! Does that mean that ultimately my chances of overcoming such side effects are better than the overall average? The vast majority of studies don't seem to measure functionality "before" treatment as well as "after", so who knows?
My first PSA reading was 131. It's been declining ever since. Assorted scans over the months have revealed no evidence of anything anywhere other than my prostate. Once removed the surgeon assured me my prostate "looked normal". Does all of that improve my odds of a "cure" at this stage, or not? Nobody seems very sure, especially me!
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
Thanks Chris,
I hope so too, but I also realise it's often not that simple. By way of an example here's what I think is a wonderful article written by a long time "online" friend of mine. It's only very recently that I learned Andy's been living with prostate cancer for 15 years:
Exit, Pursued by a Crab
In 2002, at age 48, I was diagnosed with aggressive prostate cancer. I had a prostatectomy, but, despite the entire removal of the gland, there were small amounts of metastatic disease detected in nearby lymph nodes. The cancer had not been cured. Progression of the disease was slowed for many years by intermittent hormone treatment. I experienced no physical symptoms of the disease for twelve years, although the consequences of surgery and hormone treatment were no fun. But life continued and it was good....
You become aware that the treatment options are running out when the oncologists start talking about maximizing quality, rather than quantity, of life. That’s where I am now. My life expectancy has been reduced from years to months. There still may be a few tricks left in my doctors’ books that may help extend my life beyond current expectations, but they are long shots and may not be available.
IMHO it's well worth reading the whole article.
Jim
:
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
Welcome, Soulsurfer.
Hope your recovery is going well.
Ulsterman
User
It's an amazing world and I wish you well with your recovery. Don't forget that it's a major op so take care and don't rush things as you aren't a robot.
All the best
Kevan
User
One of the reasons why surgery is favoured for younger men rather than RT is that due to greater expected lifespan of young people there is an increased risk of RT initiating other cancers in years to come which could be of the order of 20. So age is one of the considerations. Another reason favouring surgery is that it can in need be backed up with RT to further improve the chances of dealing with cancer or at least delaying it. Also, there is the possibility that cancer may regrow in a previously radiated Prostate. On the other hand RT can reach beyond where the knife can go and generally some of the worse immediate side effects of surgery are usually avoided. Then other factors can also affect thinking, whether nerve sparing is likely with surgery for example, how strongly it is felt all cancer can be removed by surgery, is the type of cancer more inclined to be radio resistant, how good is the surgeon/RT being offered? The surgeon heading the MDT in my case said he would remove my
prostate if I really wanted but suggested RT would be more appropriate. I accepted this but then spent a long time deliberating various treatments and types of RT before making a choice (see my profile/bio). I gave myself what I thought offered the best chance of successful treatment having also consulted a Professor who was an expert on radiation and particle therapy. In the event I did eventually need salvage HIFU for a regrown tumour but have been fortunate not to have had any side effects of great concern although HT/RT caused ED.
If a man decides to have treatment he has to consider all the pros and cons with his individual situation to include potential side effects. Consultants can go so far in helping a man but they are hard pressed for time which does not enable them to fully cover every aspect of all treatment options and in any case the patient may have priorities and regard risks differently.
Edited by member 27 Jul 2017 at 13:59
| Reason: Not specified
Barry |
User
I am really sorry to see this - with tertiary 5 and N1 I would want the medics to explain very clearly why they think RT would be worthwhile - I guess it will depend rather on how far into the lymphatic system it has travelled.
There is an article here that discusses the comparative results from the EU and US data sets, broken down by staging - http://www.bmj.com/content/348/bmj.g1502
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Hi
You may want to click on my picture and read my profile. I was high risk all the way and found to have significant lymphatic involvement. Although they have offered RT three times they have made it quite clear it won't be curative , so I've rejected it. It's been trial enough getting through the op and associated side-effects as far as I'm concerned. They only really offer it as its the next progression on the treatment path. Five years ago , with N1 , they wouldn't even offer it to you.
Best wishes to you anyway
User
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
Fantastic first post-op PSA reading. You lucky fella! Keep the good luck going!
AC
User
SS
My first post op PSA was 0.03 and stayed at that for around 18 months, sadly it then started to creep up and three years post RARP I had salvage RT. I did have positive margins and extraprostatic extension.
Hope yours stays low.
Thanks Chris
User
Thanks very much Chris,
Well I'm certainly not keen on being zapped at random either, or growing moobs for that matter.
We're both medical men of mystery it seems? My PSA started at 130ish then halved by the time I had my op. After the biopsy I wanted to let Leo loose PDQ, but the MDT wanted yet another scan to find the mets they were sure were there somewhere. They still haven't found 'em. PSA undetectable doesn't lie!
It may not lie, but it obviously doesn't always behave the way the medics expect it to.
Keep on trucking!
My very best wishes,
Jim
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
My latest PSA reading is up to 0.09 ug/L
I saw Cornwall's new oncologist again yesterday. Apparently the threshold at which the NHS thinks a fancy scan might be able to detect something is 0.1, so it looks like I have another 3 months to wait.
I couldn't help but agree with her that zapping my prostate bed with RT pretty much at random at this juncture is not a particularly cunning plan.
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
This is exactly why new members are not allowed to direct message other people - spilling your rubbish onto vulnerable people. Your words are also offensive to all of us who are grieving - prostate cancer is a death sentence for too many young men.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Never fear Peggles,
I'm not wound up, but Jayman seems to be incapable of taking on board the message Lyn and I are endeavouring to impart!
Jim
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
I called the oncology nurse at Treliske today, who kindly revealed to me the results of my recent PET-CT scan. It seems it didn't detect anything out of the ordinary. The nurse seemed to think that constitutes really good news. However I'm not really terribly keen on the idea of being zapped at random.
I'm visiting the local GP's surgery on Friday for another round of blood tests. Liver function, cholesterol and PSA at a minimum.
The next discussion with my oncologist is due in a couple of weeks. More news in due course.
Jim
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
Jim
I was in a very similar situation, 0.2 triggered the SRT and it was 0.27 just before I started treatment without HT. I was not overjoyed with the "very educated guess". I was refused a PSMA test. My PSA fell after SRT so but over the last 4 years as crept back up.
Hope it works out for you.
Thanks Chris
User
Hi Ido (If I may call you that?),
Thanks for the info, and your detailed log too!
"20 sessions of radiotherapy with 55 Grays total dose." - Same (proposed) here.
"PSA rose within a few weeks from 0.3 to 0.7"
In my case PSA has fallen from 0.3 to 0.25 over 4 months.
As you will see above, my GP refused to check my cholesterol and/or liver function readings on my last visit. My previous onco wanted to wait until I'm fully recovered from last Autumn's unanticipated triple CABG and subsequent iatrogenic liver problems before taking any further action.
Cheers,
Jim
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
Sorry - didn't word it very well - I know you are having SRT, what I meant was that your hospital might have a regime of 20 x 3.2Gy for radical RT and 20 x 2.75Gy for SRT, or something like that. John was put on the trial for 19 or 20 fractions at 3 / 3.2 / 3.4Gy when he had his SRT - they wanted to test out the theory that men could cope with a higher amount of radiation than had previously been thought, without the side effects becoming too intolerable. What they found was that fewer fractions at a higher dose is just as effective as the old 37 x 2Gy but with fewer side effects.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
No one formally advised me of that but after the third fraction, I realised that if I was a radiographer I would prefer spend less time looking at pubes, so I shaved that area. It's a bit like saying thank you to a bus driver, not strictly necessary, but it is polite.
Hope all goes well.
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User
An interesting research price that discusses SRT timing and risks is here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6935690/
User
Really great news Jim. Just had a look through your profile, gives us all hope that a rising PSA doesn’t necessarily mean more treatment 👍
You’ve obviously been through a lot, hope you are also feeling well.
User
The second time did prove to be lucky Chris, apart from the abysmal weather yesterday afternoon here in soggy SW England.
My current consultant (or a member of his team) would like a chat in Truro at 9:20 on the 30th to discuss the results of my scan. Given the distance from here to there I think I'll try and arrange an alternative appointment.
Jim
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
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Welcome, Soulsurfer.
Hope your recovery is going well.
Ulsterman
User
It's an amazing world and I wish you well with your recovery. Don't forget that it's a major op so take care and don't rush things as you aren't a robot.
All the best
Kevan
User
Thanks for the good wishes. I guess my recovery is going as well as can be expected? Perhaps I've even been overdoing it, since I spent a fair bit of time on Saturday morning wandering around Southmead Hospital.
The most painful things up to now have been my shoulders and the wind, rather than the holes in my abdomen. After breakfast I went to the hotel toilet to empty my leg bag for the first time. There was hardly anything in it. I sat down to (successfully!) expel some gas. Simultaneously I squirted some blood stained urine over the toilet seat, whereupon my newly trained pelvic floor muscles cut in immediately.
All of this was unexpected, so I called the number on my discharge paperwork. There was a recorded message explaining that nobody was there to answer the phone at weekends, I figured it was more prudent to head back to the hospital than spend the next 2 1/2 hours driving back to Cornwall. The ward I was discharged from said they couldn't help, since I'd already been discharged. A nice nurse led me to over to the "Hot Clinic", where I discovered that I might have to wait several hours to be seen.
I explained that given the amount of liquids I'd consumed that morning I was concerned that my bladder might be under rather more pressure than was good for it in all the circumstances. Repeating that message a few times resulted in an inspection by the urology registrar within the hour. He said my lower abdomen certainly felt distended, but a quick bladder scan revealed it was virtually empty. He diagnosed a bladder spasm caused by the foreign body now located within it. He also explained how the catheter worked and how there is inevitably some liquid sitting below the holes in the catheter that can leak out via another route, particularly under stress.
The moral of the tale? Wouldn't it save a lot of time and trouble for all concerned if when you discharge a patient on a Saturday less than 24 hours after major surgery you also ensure that there's somebody there to answer the telephone?
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
Once the pain from assorted gasses had eased after 5 days I dispensed with my 2 paracetamol every 6 hours or so.
Then I was left with assorted catheter issues. It grew gradually more and more uncomfortable, and I kept on getting leaks. After Googling the design of a foley catheter I worked out that it seemed to operate as designed if I was lying flat on my back, which I was trying to avoid as far as possible. However it leaked like the proverbial sieve if I stood up, which I was trying to do as much as possible.
At long last the catheter has been removed. The nurse who put me out of my misery assured me I had been experiencing very common side effects. On day one post catheter I now seem to have sprung a permanent leak. The pads I was provided with in the Prostate Cancer UK "Surgery support pack" have proven to be extremely useful!
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
Hi Soulsurfer
You can never tell how the incontinence issue is likely to pan out. As you appreciate some guys have no issues, others never gain full control and possibly the majority are somewhere in between. I stocked up with pads and found that after a week I was dry at night. It took me about 5 months to regain almost full control but even now coughing or sneezing makes me leak a bit. It's no big deal and hasn't stopped me from doing anything.
You might be lucky, so fingers crossed.
I did find that I used to leak a lot when walking so I used a Conveen sheath and leg bag which was brilliant when walking in the Brecon Beacons and Black Mountains as I didn't have to change pads and I found it very comfortable.
Anyway all the best with your recovery but don't rush things.
Kevan
User
Thanks for the tip about the sheath Kevan. Whilst it's early days for me at the moment, walking is indeed the worst case.
Given my inability to retain more than a few cc in my bladder during the day I was pleasantly surprised by my first night. Headed for the bathroom three times having stored up significant volumes and with not a lot of leakage, by my daytime standards at least!
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
I have been taken to task elsewhere for saying "It does seem strange that the experts can't agree on a recommended course of treatment, and that at the end of the day things come down to tossing a metaphorical coin."
Perhaps I should explain my remark further? Firstly I'm certainly not suggesting literally tossing a physical coin to decide on a course of treatment! However many moons ago I was a University researcher. Engineering, not medicine. I figured I'd do a literature search before making a choice between the options offered to me. Robotic radical prostatectomy, or 3 months of hormone therapy followed by HDR brachytherapy followed by radiotherapy followed by 2 more years of hormone therapy.
So for someone in my position what are the odds of a) a cure, and b) ongoing side effects? It's rather hard to tell! It seems I'm eligible for prostatectomy because I'm "young and fit". Does that skew the results of the available studies? Does being "young and fit" improve one's chances of a successful outcome following radiotherapy compared to the overall average for example? The answer to that question is not readily apparent in the literature.
Going into my op I had zero urinary or erectile problems. That's certainly not the case now! Does that mean that ultimately my chances of overcoming such side effects are better than the overall average? The vast majority of studies don't seem to measure functionality "before" treatment as well as "after", so who knows?
My first PSA reading was 131. It's been declining ever since. Assorted scans over the months have revealed no evidence of anything anywhere other than my prostate. Once removed the surgeon assured me my prostate "looked normal". Does all of that improve my odds of a "cure" at this stage, or not? Nobody seems very sure, especially me!
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
I don't think you looked at the best research :-(
EU study, large scale, and U.S. rsearch conducted over 10 and 5 years with around 10,000 men found that all other things being equal (ie staging, grade, etc) your outcome will be exactly the same regardless of whether you choose RP, RT/HT or brachy / HT. Some slight variations .... Open RP has slightly better outcomes than Da Vinci in terms of side effects and margins, and brachy is looking slightly more successful than IMRT although there is insufficient data yet to compare brachy side effects. More surprising, a man diagnosed with T1 G3+3 and opting for active surveillance will have exactly the same outcomes at 10 years as if he had chosen radical treatment.
If all else is equal and you have the luxury of treatment options, the doctors can't tell you which treatment is 'best'; it all depends on your approach to risk, which side effects seem more acceptable to you, your life expectancy and so on.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Hi Lyn,
Thanks very much for your input.
Do you by any chance have a link to the research you are referring to? I'm actually interested in discovering some stats when all else isn't equal. Are the 10,000 men grouped as "young and fit" versus "not so young" and/or "not so fit" for example? Perhaps all this has been discussed at length elsewhere on here? If so perhaps you could point me in the right direction?
Needless to say my vital statistics aren't T1 G3+3. I wasn't offered active surveillance, and the assorted consultants I've had discussions with didn't enquire about my "approach to risk"!
Jim
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
One of the reasons why surgery is favoured for younger men rather than RT is that due to greater expected lifespan of young people there is an increased risk of RT initiating other cancers in years to come which could be of the order of 20. So age is one of the considerations. Another reason favouring surgery is that it can in need be backed up with RT to further improve the chances of dealing with cancer or at least delaying it. Also, there is the possibility that cancer may regrow in a previously radiated Prostate. On the other hand RT can reach beyond where the knife can go and generally some of the worse immediate side effects of surgery are usually avoided. Then other factors can also affect thinking, whether nerve sparing is likely with surgery for example, how strongly it is felt all cancer can be removed by surgery, is the type of cancer more inclined to be radio resistant, how good is the surgeon/RT being offered? The surgeon heading the MDT in my case said he would remove my
prostate if I really wanted but suggested RT would be more appropriate. I accepted this but then spent a long time deliberating various treatments and types of RT before making a choice (see my profile/bio). I gave myself what I thought offered the best chance of successful treatment having also consulted a Professor who was an expert on radiation and particle therapy. In the event I did eventually need salvage HIFU for a regrown tumour but have been fortunate not to have had any side effects of great concern although HT/RT caused ED.
If a man decides to have treatment he has to consider all the pros and cons with his individual situation to include potential side effects. Consultants can go so far in helping a man but they are hard pressed for time which does not enable them to fully cover every aspect of all treatment options and in any case the patient may have priorities and regard risks differently.
Edited by member 27 Jul 2017 at 13:59
| Reason: Not specified
Barry |
User
I am also the sort who wants to look at the evidence, and I found pretty much what is described above. The success rate (measured by percent not having died) seems pretty much the same for surgery, radiotherapy or active surveillance. The last is a bit misleading though, a large proportion of those starting with active surveillance will nevertheless have treatment over the period studied but it will be delayed until there is further indication.
So it seems reasonable that doctors don't dogmatically recommend one approach over another but make a collaborative decision with the patient. If the patient doesn't like the idea of an operation, then that is relevant in the choice.
For me, like SoulSurfer age 63 and reasonably active, I went with surgery. I didn't like the idea of getting malignant side effects of RT in my seventies or early eighties, and liked the "insurance policy" of still having RT available if there were signs of recurrence in the future. If I had been ten years older, I might have made a different decision given the likelihood of slower recovery after what is pretty major surgery plus any RT side effects being probably at a point where I might well have other health issues anyway. However I probably didn't think hard enough about active surveillance, though the upshot of having a positive margin (albeit small) means I am happy I didn't wait and give the cancer time to spread further.
The gamble though was with continence and erectile side effects, inevitable with surgery at least temporarily and less likely with RT. The first few months after the operation were certainly a struggle, but since then both have improved significantly even if not yet all the way to their starting points. I now do everything I would have done anyway apart from the added inconvenience of messing with pads, a daily pill and an occasional session with the vacuum device.
User
It's almost a month since Leo removed my prostate plus some lymph nodes. I presume that by now my missing bits have been carefully examined under a microscope, but I have yet to hear what has been discovered. Nevertheless I do have some news to impart.
My main problem thus far has been the urinary incontinence. I had a lot of trouble with bypassing of the catheter before it was removed. By the time that happened John Thomas was pink and sore. He has remained that way since then, but recently I started a new regime which seems to bearing some fruit. With the approval of my clinical nurse specialist for some time now he's been receiving an application of almond oil every time I inserted a new pad into my underpants. That seemed to prevent further deterioration but didn't effect a cure. More recently I've tried using thinner pads, changed more frequently. At last the soreness is starting to subside.
So much so that when I was giving JT a thorough clean last night the sensation was pleasurable rather than painful. I felt compelled to continue the cleansing process at length and I'm now pleased to be able to report that I have confirmed to my own satisfaction that it possible to achieve orgasm without ejaculation within one month of a nerve sparing robotic radical prostatectomy!
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
Pathology results are usually shared with the patient at the post-op review / first post-op PSA which in most CCG areas is 6 - 8 weeks after the RP.
John had his first non-erect orgasm the day the catheter came out so you have some catching up to do 😂😂😂
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Hi J-B,
Did you also try perusing the academic literature? I'm still not sure which papers Lyn was referring to above, but since Leo lives in Bristol, and the team there are involved in
the ProtecT trial, that was one of the first places I looked. A few papers have been published, and I guess this is the main one:
10-Year Outcomes after Monitoring, Surgery, or Radiotherapy for Localized Prostate Cancer
From the "methods" section:
A total of 545 men were randomly assigned to active monitoring, 553 to radical prostatectomy, and 545 to radiotherapy. The median age of the participants was 62 years (range, 50 to 69), the median PSA level at the prostate-check clinic was 4.6 ng per milliliter (range, 3.0 to 19.9), 77% had tumors with a Gleason score of 6 (on a scale from 6 to 10, with higher scores indicating a worse prognosis), and 76% had stage T1c disease; there were no meaningful differences at baseline among the three randomized groups.
I couldn't help but wonder how the conclusions might apply to me though. Initial PSA = 131, Gleason = 4+4, Stage = T2a/N0/M0
From the "conclusions" section:
There are several limitations of the ProtecT trial. First, the protocol was developed almost two decades ago; since then, treatments and diagnostic techniques for prostate cancer have evolved. The ProtecT trial did not use multiparametric magnetic resonance imaging to evaluate patients at diagnosis or during monitoring. Surgical techniques have changed with robot-assisted laparoscopic prostatectomy, and although all patients in the radiotherapy group received neoadjuvant androgen-deprivation therapy with three-dimensional conformal irradiation, new techniques such as intensity-modulated radiotherapy have been introduced, and brachytherapy was not included.
Followed by:
At a median follow-up of 10 years, the ProtecT trial showed that mortality from prostate cancer was low, irrespective of treatment assignment. Prostatectomy and radiotherapy were associated with lower rates of disease progression than active monitoring; however, 44% of the patients who were assigned to active monitoring did not receive radical treatment and avoided side effects.Men with newly diagnosed, localized prostate cancer need to consider the critical trade-off between the short-term and long-term effects of radical treatments on urinary, bowel, and sexual function and the higher risks of disease progression with active monitoring, as well as the effects of each of these options on quality of life.
I guess the "mortality from prostate cancer was low" bit is comforting but again, does that apply to someone with my vital statistics and what about after 20 years? And what about "the critical trade-off between the short-term and long-term effects of radical treatments on urinary, bowel, and sexual function" for that matter?
To be continued......
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
My next appointment is with a urology consultant in Newquay on September 1st. I'm rather hoping to have sight of my results well before then though, so I can ask him some (hopefully!) intelligent questions. Since it's in Newquay I think I'll take my wetsuit along. Do you suppose I'll be able to get his permission to go bodyboarding that afternoon?
Quote:John had his first non-erect orgasm the day the catheter came out so you have some catching up to do 😂😂😂
I didn't realise there was a competition! Does it bump me up the leader board if I reveal that in my case "somewhat erect" would be a more accurate description?
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
Southmead Hospital have kindly sent me my pathology report and MDT meeting minutes. Given my PSA results it's not too much of a shock to discover that my staging has changed. The revised version reads as follows:
Local 4+3, Tertiary 5, T3b/N1, EP +ve.
It seems the consensus at the MDT meeting is that radiotherapy should be the next step. Personally I'm eagerly awaiting the results of my next PSA test on 25/8/17.
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
I am really sorry to see this - with tertiary 5 and N1 I would want the medics to explain very clearly why they think RT would be worthwhile - I guess it will depend rather on how far into the lymphatic system it has travelled.
There is an article here that discusses the comparative results from the EU and US data sets, broken down by staging - http://www.bmj.com/content/348/bmj.g1502
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Originally Posted by: Online Community MemberI am really sorry to see this - with tertiary 5 and N1 I would want the medics to explain very clearly why they think RT would be worthwhile - I guess it will depend rather on how far into the lymphatic system it has travelled.
Thanks Lyn. Well there had to be some explanation for my sky high PSA readings!
Things could certainly be a lot worse at this juncture. Negative margins all round except for "Total length 1.6mm around base of right seminal vescicle". Which has of course already been removed. There is also some "Extracapsular perineural invasion", but the direction thereof is unspecified.
As far as I can tell from a quick Google most men don't even have a "preprostatic lymph node", which is the only one of mine that shows a "metastatic deposit of adenocarcinoma, consistent with prostatic primary". My sample ileac and obturator nodes on both sides got the all clear.
As you point out, it's far from clear to me at the moment what the target of any future RT might be.
Thanks again. I hadn't previously perused that one, so I shall go away and do so forthwith!
Edited by member 04 Aug 2017 at 19:19
| Reason: Not specified
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
Hi
You may want to click on my picture and read my profile. I was high risk all the way and found to have significant lymphatic involvement. Although they have offered RT three times they have made it quite clear it won't be curative , so I've rejected it. It's been trial enough getting through the op and associated side-effects as far as I'm concerned. They only really offer it as its the next progression on the treatment path. Five years ago , with N1 , they wouldn't even offer it to you.
Best wishes to you anyway
User
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
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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
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
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
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
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 |
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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
Sorry, missed Choline scan already done as indeed shown under your bio.
Barry |
User
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
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
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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
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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
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
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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
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
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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
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
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
Fantastic first post-op PSA reading. You lucky fella! Keep the good luck going!
AC
User
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 |
User
SS
My first post op PSA was 0.03 and stayed at that for around 18 months, sadly it then started to creep up and three years post RARP I had salvage RT. I did have positive margins and extraprostatic extension.
Hope yours stays low.
Thanks Chris
User
Thanks Chris,
I hope so too, but I also realise it's often not that simple. By way of an example here's what I think is a wonderful article written by a long time "online" friend of mine. It's only very recently that I learned Andy's been living with prostate cancer for 15 years:
Exit, Pursued by a Crab
In 2002, at age 48, I was diagnosed with aggressive prostate cancer. I had a prostatectomy, but, despite the entire removal of the gland, there were small amounts of metastatic disease detected in nearby lymph nodes. The cancer had not been cured. Progression of the disease was slowed for many years by intermittent hormone treatment. I experienced no physical symptoms of the disease for twelve years, although the consequences of surgery and hormone treatment were no fun. But life continued and it was good....
You become aware that the treatment options are running out when the oncologists start talking about maximizing quality, rather than quantity, of life. That’s where I am now. My life expectancy has been reduced from years to months. There still may be a few tricks left in my doctors’ books that may help extend my life beyond current expectations, but they are long shots and may not be available.
IMHO it's well worth reading the whole article.
Jim
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Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
I'm back from the trip to see my consultant urologist in Newquay. Things went about as well as could be expected in all the circumstances.
In view of my suddenly undetectable PSA concentration no further treatment is indicated unless 3 monthly PSA tests reveal increasing levels.
I was offered Viagra etc. but declined. I explained that I'm not a fan of pills and potions. Until Leo went to work I hadn't even taken a pain killer since I left home at the age of 17. All being well John Thomas should receive a vacuum pump to play with in the near future.
"Keep up the pelvic floor exercises" was also mentioned!
I was informed that I could start cycling and bodyboarding as soon as felt up to it. Yesterday if not sooner!!
I enquired about diet and such like. "A healthy lifestyle and a positive attitude" was recommended. Hopefully I'll be able to manage that from now on.
Next on my agenda is a consultation with the surgeon who operated Leo's controls. That's back in Bristol in mid October.
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
A minor victory. As long as I'm near a WC at all times I can now control leakage well enough to survive the day using only a single pad. Long walks in the country are an entirely different matter however!
I went to a local hostelry to celebrate with a single pint. Before leaving I headed for the Gents and in my inebriated condition decided to try pointing Percy at the porcelain in traditional male fashion for the first time since my op. I'm delighted to be able to report that I managed this by now unfamiliar procedure without dripping on my clothing.
Another celebratory pint is in order I feel.
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
Well done! I had the same feeling of a milestone when I reached the same stage and started using public urinals again - while I knew I would need a pad change at some point at the day I would queue for a cubicle so that I could inspect the current pad.
Since then I think my average leakage has continued to decrease. Like you the likelihood is higher when I am mostly upright and moving - those walks - but now very slight when predominantly sedentary. And as I found last weekend alcohol can promote leakage: I went to a party where everyone was standing chatting and it was difficult to keep count of the top-ups to my glass.
User
Thanks J-B,
I've had a temporary alcohol induced relapse on the continence front too! We went to London for a couple of days and I had three standard sized glasses of wine with my meal. Since the evening was warm(ish) and dry we decided to see how the other half live by taking a stroll around Mayfair. I thought I could handle a gentle stroll these days. I might well be able to if stone cold sober, but not with half a bottle of Pinot Bianco inside me I couldn't!
Jim
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
First the good news. My latest PSA test result has just come back as "undetectable" again.
Next the bad news. I have an appointment with the surgeon who so expertly operated Leo's controls tomorrow. However Hurricane Ophelia is imminent, and the worst of the winds are due to arrive at exactly the time I'm supposed to be motoring up the M5 to Bristol. Discretion being the better part of valour it seems prudent to stay at home and batten down the hatches instead.
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
Somewhat belatedly I am happy to report that my eventual trip up the M5 to Southmead Hospital went about as well as could be expected.
First of all I saw the junior surgeon who I had first met in pre-op back in July. He looked at my notes and appeared astonished when I replied "no" to his question "aren't you on hormones yet"?
I explained the gist of my trip to Newquay, which seemed to satisfy him somewhat. He then set off in search of the senior Leo operator. Eventually they both returned and it was agreed that no further treatment would be required until my PSA reading rose above its current undetectable level. The main man reinforced the message that I shouldn't raise my hopes too far just yet.
In other news John Thomas has even more belatedly received his vacuum pump. My GP didn't want to prescribe it until JT and I had received some training from the device's UK agent, which is a non trivial task when you're located this far out in the sticks. More on all that when we've had a bit more practice with the device, which does seem to reduce "spontaneity" somewhat!
Jim
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
I went to see my GP because my right leg had suddenly become swollen below the knee. A D-Dimer test was ordered which came back negative, which is good news.
Since they were taking my blood anyway my 6+ month PSA was also ordered. That came back undetectable, which is also good news!
Today I had a doppler ultrasound test on my feet. Apparently "triphasic" with a ratio of 1.2 is good news too. Nobody seems terribly sure but the current diagnosis is lymphoedema due to my missing lymph nodes rather than a blockage. I've been prescribed some compression stockings.
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
Brilliant news on the PSA front Soulsurfer but sorry to hear about the lymphodema. It would be interesting to know if this complication is more or less common with robotic RP but I don’t think I have ever seen data on it.
Edited by member 02 Feb 2018 at 23:25
| Reason: Not specified
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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