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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User
Thanks Lyn,
My apologies for my belated reply!
I too have no idea what the stats are on lymphoedema, or indeed whether in my case the swelling is a side effect of my op or not. It seems likely to me, but I have yet to discuss the problem with a specialist.
Whatever the cause it still seems to be confined to one leg only, and my new black stockings do at least seem to do a reasonable job at controlling the symptoms.
Jim
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
Oh it is definitely a known side effect of having lymph nodes removed during RP which is why not all surgeons remove them automatically. What I am not sure about is whether it is more likely with keyhole than open or whether it is the same whichever type of RP you have.
Hope it improves soon.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
If anything it's getting worse! The skin on my right leg was getting rather sore, especially around the ankle.
Another trip to the GP resulted in a diagnosis of eczema. Apparently it's a common side effect of oedema.
I've been told not get any soap anywhere near the sore bits, not even my trusty hypoallergenic shower gel.
I've been prescribed a big pot of Zeroderm, which does seem to help.
Jim
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
I think I was recently told there is a 3% chance of lymphodoema following a prostatectomy including lymphadenectomy
Edited by member 07 Apr 2018 at 14:22
| Reason: Not specified
User
A straw poll on here would give us a much higher percentage than 3% I think
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Can you set up polls on this website?
It does seem very primitive and clunky compared to something like UBB.
Did PCUK design their own bulletin board. If so, why?
User
Bollinge, I think Lyn was writing figuratively. When lymph nodes are removed some degree of lymphodoema is likely, so forget the 3%!
AC
User
I've now had a telephone consultation with the surgeon who was at Leo's controls. I neglected to ask him Lyn's question, but I believe the answer is considerably more than 3%!
Apparently my oedema isn't necessarily a life sentence. It seem there are various pathways carrying lymph from the ankles to the abdomen, only one of which has been cut. With a bit of luck and continued exercise of my calf muscles things may improve of their own accord. That doesn't seem to have happened yet though!
I was due my latest PSA test last week, but the nurse couldn't extract any blood. I was too dehydrated apparently. She's going to try again next week.
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
Would you like the good news or the bad news first?
Let's start with the "good" shall we? Despite what has admittedly not been a vast amount of practice since the op my better half and I managed to get things together reasonably successfully the other night without any mechanical or chemical assistance. There is certainly some light at the end of the metaphorical tunnel!
On the other side of the coin I had my latest PSA test earlier in the week. The reading is not "undetectable" any more. It is currently all of 0.04 ug/L.
Jim
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
Well that looks like 2 bits of good news to me - 0.04 is okay
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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