Prostate cancer
Join Date: Nov 2018
Location: West Sussex
Posts: 25
Prostate cancer
I was diagnosed 8 years ago when i was 57.. PSA of 4 ... abnormally shaped prostate so I was told ... biopsy carried out & got results 2 weeks later ..Gleason score of 3:3 .... low dose brachytherapy carried out early 2011.....PSA went down to .5 ... steadily risen since then to 4.5 so basically treatment has failed so now told its either removal with rather telling side effects or wait till PSA reaches 10 then hormone injections but feel good & still alive so as I told family, friends & work colleagues get tested!!
Join Date: Aug 2015
Location: England
Posts: 260
Originally Posted by Jackjones1
I was diagnosed 8 years ago when i was 57.. PSA of 4 ... abnormally shaped prostate so I was told ... biopsy carried out & got results 2 weeks later ..Gleason score of 3:3 .... low dose brachytherapy carried out early 2011.....PSA went down to .5 ... steadily risen since then to 4.5 so basically treatment has failed so now told its either removal with rather telling side effects or wait till PSA reaches 10 then hormone injections but feel good & still alive so as I told family, friends & work colleagues get tested!!
You have highlighted the problem with PSA test. The reading of 4 is within the upper level for your age. I too was told that my prostate was enlarged by my GP but the MRI SCAN apparently showed it to be normal. As the Urology Specialist explained only a very small proportion of it can be felt.
Join Date: Nov 2018
Location: West Sussex
Posts: 25
Prostate cancer
Have to say Buster 15 that my appointment was already booked for 2 weeks after the biopsy & that was at Queen Mary’s at Roehampton & after that I was referred to The Royal Marsden at Chelsea who I can’t speak highly enough & I wish you the best that there is nothing untoward with you.
It is true what they say you have to be positive in these situations!
It is true what they say you have to be positive in these situations!
Join Date: Aug 2016
Location: Ilmington, Warwickshire
Posts: 1
Originally Posted by Buster15
Wow. I really didn't expect anyone to ask so I appreciate your response.
The answer is no not yet. I had the biopsy on 19/10 and was told I would have an appointment in 10 to 12 days. As it is now over 3 weeks I will speak with the GP tomorrow.
I was wondering whether anyone else could tell me how long they had to wait for their results, where they were given a Gleason score.
Many thanks.
The answer is no not yet. I had the biopsy on 19/10 and was told I would have an appointment in 10 to 12 days. As it is now over 3 weeks I will speak with the GP tomorrow.
I was wondering whether anyone else could tell me how long they had to wait for their results, where they were given a Gleason score.
Many thanks.
I posted in September about my concern that his PSA post brachy/RDT was rising slowly but his urologist has confirmed that it will do and possibly level off at around 3.0 or 4.0.
Join Date: Aug 2015
Location: England
Posts: 260
Originally Posted by Jackjones1
Have to say Buster 15 that my appointment was already booked for 2 weeks after the biopsy & that was at Queen Mary’s at Roehampton & after that I was referred to The Royal Marsden at Chelsea who I can’t speak highly enough & I wish you the best that there is nothing untoward with you.
It is true what they say you have to be positive in these situations!
It is true what they say you have to be positive in these situations!
Join Date: Nov 2018
Location: West Sussex
Posts: 25
Prostate cancer
I also had a friend who had rather a rapid rise in his PSA to 11 & they decided to do rightly or wrongly a biopsy & his came back clear just an enlarged prostate, but I would advise anyone over the age of 50 ( do believe a Swedish study said even earlier) to get tested as a work colleague of 52 had to have his prostate removed but thankfully caught early enough & is now fine.
Join Date: Aug 2015
Location: England
Posts: 260
Originally Posted by Buster15
Thank you so much my friend. I am by nature a very positive person and not overly worried. I look after myself and trust my body.
Join Date: Nov 2018
Location: West Sussex
Posts: 25
That’s good news Buster 15 & hopefully what will happen now is that they will keep a close watch on your PSA & possibly suggest some form of treatment to bring it down.
As you say they can never be 100% certain but with no doubt 10 biopsies it would have been picked up!
As you say they can never be 100% certain but with no doubt 10 biopsies it would have been picked up!
Join Date: Feb 2008
Location: Southwold
Age: 68
Posts: 0
My story really is a plea to get PSA tested. At Christmas 2014 my wife visited an ex neighbour to drop off a card. Her husband was a football season ticket holder and he had noticed that during half time he no longer had the energy to make his way down for a drink and back before the match restarted. A routine visit to his GP revealed prostate cancer that had spread and was now stage 4.
My dad had prostate issues so I visited my GP. His finger said I was ok but a PSA test was 21. Consultant gave me the finger and agreed with my GP. A biopsy (walk in the park in my case, felt like someone flicking you inside with a rubber band) revealed a Gleason score of 3+3 so cancerous but fairly low grade, non aggressive and present on just one sample of 14
Another consultant said he was puzzled by the disparity between a. 21 PSA and the relatively benign biopsy result.
i had hormone injections and 37 spins in the radio machine in January 2016. My PSA subsequently fell in six monthly checks to 6, 1.8 and 0.6. Last month my new ( Lovely Scottish lady) consultant told me that despite my hormone treatment finishing my PSA was now 0.2 and one of the edge of the best outcomes she had seen. The moral of this is pretty clear - GET CHECKED.!!
My dad had prostate issues so I visited my GP. His finger said I was ok but a PSA test was 21. Consultant gave me the finger and agreed with my GP. A biopsy (walk in the park in my case, felt like someone flicking you inside with a rubber band) revealed a Gleason score of 3+3 so cancerous but fairly low grade, non aggressive and present on just one sample of 14
Another consultant said he was puzzled by the disparity between a. 21 PSA and the relatively benign biopsy result.
i had hormone injections and 37 spins in the radio machine in January 2016. My PSA subsequently fell in six monthly checks to 6, 1.8 and 0.6. Last month my new ( Lovely Scottish lady) consultant told me that despite my hormone treatment finishing my PSA was now 0.2 and one of the edge of the best outcomes she had seen. The moral of this is pretty clear - GET CHECKED.!!
Join Date: Sep 2002
Location: Great South East, tired and retired
Posts: 3,004
Buster, any progress?
I had robotic surgery over 5 years ago, PSA instantly down to .008 and staying there. But luckily the cancer was completely contained in the capsule and hadn't escaped, so the pros of getting surgery sooner instead of later are quite prominent.
Nerve damage has slowly repaired itself, no need for Cialis or Viagra after the first year. And no wet spots any more! Well, not from me, anyway...
I had robotic surgery over 5 years ago, PSA instantly down to .008 and staying there. But luckily the cancer was completely contained in the capsule and hadn't escaped, so the pros of getting surgery sooner instead of later are quite prominent.
Nerve damage has slowly repaired itself, no need for Cialis or Viagra after the first year. And no wet spots any more! Well, not from me, anyway...
Join Date: Feb 2004
Location: USA
Posts: 2,505
Just heard from another friend who has prostate cancer. This makes nine. If the quoted statistic that one in six men gets it is accurate, I have to wonder about the number I know since I don't know fifty four guys well enough to know their health status.
It keeps me getting PSAs and DREs.
It keeps me getting PSAs and DREs.
Join Date: Aug 2015
Location: England
Posts: 260
Originally Posted by Ascend Charlie
Buster, any progress?
Thank you for your enquiry and I am of course pleased that your treatment has gone so well.
Join Date: Nov 2018
Location: back out to Grasse
Posts: 284
Well, here I am, 18 days after my full radical prostatectomy, and well along the road.
My Urologist was doing routine annual checks and noticed a slight swelling to the right side of the prostate. He said he would monitor and then my GP noticed a slight bounce from 4.0 to 4.8. on the PSA, then it returned to normal (4.0).
Back to see the Urologist and an MRI happened with an indication of 2 areas of concern within the core of the prostate.(Left and right quadrants). 24 point biopsy yielded Gleason:3.4 and 4.0 respectively.
Followed up with Bone Scan and Tissue scan: both clear. The choice became - radio or radical. if radio, later surgery was not possible!
At 73 no question to answer - Radical.. The Urologist recommended going wide to ensure that anything in the Nerve bundles or glands was caught.
Had some complications with Catheter positioning and Pelvic pain, but eventually resolved.
Home for a week now, very little pain at this stage, control over urine and other functions returning to normal.
Results - No encroachment outside of the core, nothing in the semen vesicles, so effectively clear.
I trampled a bit of a rough road but normally it would have been a 6 day stay.
Of one thing I am certain: the PSA score could easily have been missed if I was not being checked for other stuff and even then the Generalist had to recognise it for what it was. The urologist already had an inkling (and told me) so when I was referred for PSA and the blood test was normal, he pursued the MRI for a first look. After that I entered the mainstream diagnosis and medical panel recommendation process.
The best of news overall, Physio starts next week.
Imagegear
My Urologist was doing routine annual checks and noticed a slight swelling to the right side of the prostate. He said he would monitor and then my GP noticed a slight bounce from 4.0 to 4.8. on the PSA, then it returned to normal (4.0).
Back to see the Urologist and an MRI happened with an indication of 2 areas of concern within the core of the prostate.(Left and right quadrants). 24 point biopsy yielded Gleason:3.4 and 4.0 respectively.
Followed up with Bone Scan and Tissue scan: both clear. The choice became - radio or radical. if radio, later surgery was not possible!
At 73 no question to answer - Radical.. The Urologist recommended going wide to ensure that anything in the Nerve bundles or glands was caught.
Had some complications with Catheter positioning and Pelvic pain, but eventually resolved.
Home for a week now, very little pain at this stage, control over urine and other functions returning to normal.
Results - No encroachment outside of the core, nothing in the semen vesicles, so effectively clear.
I trampled a bit of a rough road but normally it would have been a 6 day stay.
Of one thing I am certain: the PSA score could easily have been missed if I was not being checked for other stuff and even then the Generalist had to recognise it for what it was. The urologist already had an inkling (and told me) so when I was referred for PSA and the blood test was normal, he pursued the MRI for a first look. After that I entered the mainstream diagnosis and medical panel recommendation process.
The best of news overall, Physio starts next week.
Imagegear
Join Date: Feb 2004
Location: USA
Posts: 2,505
Imagegear,
You've had quite an ordeal but I'm glad you've come out the other side OK.
I know a large number of men with prostate cancer (beyond the one in six statistic we see advertised) but they're all still above ground and doing well after a variety of treatment choices. You will be too.
They all caught it due to an elevated PSA or rate of PSA rise.
Choosing a treatment option seems to be a very difficult process.
Getting a PSA test is critical despite what we read occasionally read in the press saying they aren't needed.
Hang in there.
You've had quite an ordeal but I'm glad you've come out the other side OK.
I know a large number of men with prostate cancer (beyond the one in six statistic we see advertised) but they're all still above ground and doing well after a variety of treatment choices. You will be too.
They all caught it due to an elevated PSA or rate of PSA rise.
Choosing a treatment option seems to be a very difficult process.
Getting a PSA test is critical despite what we read occasionally read in the press saying they aren't needed.
Hang in there.
Join Date: Jul 2013
Location: Everett, WA
Age: 65
Posts: 2,942
Originally Posted by bafanguy
Imagegear,
I know a large number of men with prostate cancer (beyond the one in six statistic we see advertised) but they're all still above ground and doing well after a variety of treatment choices. You will be too.
They all caught it due to an elevated PSA or rate of PSA rise.
I know a large number of men with prostate cancer (beyond the one in six statistic we see advertised) but they're all still above ground and doing well after a variety of treatment choices. You will be too.
They all caught it due to an elevated PSA or rate of PSA rise.
My own story has become a bit mixed. I got the seed implant a year ago June, and I'm still not fully over the side effects (thankfully I've not had any noticeable side effects from taking FloMax - which is good because I can readily tell if I forget to take it). The good news is that my PSA is low enough to be nearly unmeasureable and all the signs are that the cancer is gone.
I occasional hear of a Feminist that's claiming that if men got breast cancer, there would be a cure in short order. Prostate cancer is proof positive that those Feminists that claim that are clueless.
N4790P
Join Date: Jun 2002
Location: Asia
Age: 70
Posts: 2,064
Originally Posted by tdracer
I saw somewhere that the lifetime number was close to half of all men will get prostate cancer, although the number that require active treatment was quite a bit lower (not sure where I saw that). But few men actually die from it.
My own story has become a bit mixed. I got the seed implant a year ago June, and I'm still not fully over the side effects (thankfully I've not had any noticeable side effects from taking FloMax - which is good because I can readily tell if I forget to take it). The good news is that my PSA is low enough to be nearly unmeasureable and all the signs are that the cancer is gone.
I occasional hear of a Feminist that's claiming that if men got breast cancer, there would be a cure in short order. Prostate cancer is proof positive that those Feminists that claim that are clueless.
My own story has become a bit mixed. I got the seed implant a year ago June, and I'm still not fully over the side effects (thankfully I've not had any noticeable side effects from taking FloMax - which is good because I can readily tell if I forget to take it). The good news is that my PSA is low enough to be nearly unmeasureable and all the signs are that the cancer is gone.
I occasional hear of a Feminist that's claiming that if men got breast cancer, there would be a cure in short order. Prostate cancer is proof positive that those Feminists that claim that are clueless.
Join Date: Dec 2016
Location: The Twain
Posts: 138
As this thread was so useful to me in the last four months, I feel honour bound to contribute something to it. I hope that it may be a help to others in our predicament, as many of the contributions in this thread have been to me.
At my previous flight medical the AME suggested a digital exam and a PSA test. As it was a few years since I had had one I agreed and he reported a small protrusion on one side. The lab test came back with a PSA of 10. I am a 69 year old presenting fit, and he suggested a visit to a urologist. I agreed and the next week I was again examined this time with an ultrasound and he said that the prostate was mildly larger so recommended a course of antibiotics. I was surprised by this as was my wife comes from a country and profession where the use of antibiotics has almost been banned except for very specific reasons, and never used as a give-it-a go type of intervention. Other aspects of this specialist from my personal point of view led me to find another.
Through medical friends I was directed to a consultant at Guys Hospital in the UK. I flew the required 12 hours to get there and had an interview with this consultant urologist. Within a week I had an MRI, and a transperineal biopsy. The MRI is fine if you can stand being in a tube and clash metal bands (I told the nurse I have heard worse in a Hamburg club) and although I was stressed about the biopsy it was a non event for me. You are under a general anaesthetic, you feel nothing and wake with no chemical hangover. Afterwards you cannot even see where the needles went in. I felt a bit of a fraud for worrying about it.
The result came back as a Gleason 4-3, mostly on one side of the prostate. The surgeon urologist, being a surgeon suggested a robot guided radical prostatectomy but sent me to an onchologist who specialised in radio therapy to the discuss the other options. Together they made me realise that I had to do something, that either procedure would be equivalent in success rate, and that in the end the decision was mine. Gulp.
Somewhere in the thread above, it may be from BoeingBoy, the poster said that the decision becomes an emotional one. To me that was excellent advice. It depends on your character type as to whether you want surgery or modern radio therapy. Three days before my decide day, I was for radio therapy. Then I saw that for me, surgery would be better, but it was a stressful time, and required a lot of shaving mirror discussions.
The next stage was an interesting one for me as I was pointed in the direction of a group of people that I did not know existed, specialist urology nurses, and one very rare character, a consultant urology nurse. I am still in awe of the consummate professionalism of these women, for they were all women. They have the empathy and approachability of a nurse, with the massive knowledge base of a specialist or consultant. They ran me though the pre and post op expectations in a way that a surgeon or onchologist would mostly be unable to provide. They prepared me psychologically for the operation and the post procedure fears of incontinence and impotence that were uppermost in my mind. For the first time in many weeks I started sleeping better. If your system does not have this level of nurses on your pay grade, pay yourself. They are the pastoral care you need at this time.
To help navigate the robotic procedure I had a PSMA PET scan a week before the operation, which uses nuclear medicine to illuminate the CT scan. This gives the surgeon another tool to assist his procedure planning and is not always performed, but was requested by my surgeon. I felt no side effects from the illuminating drug and to me it was like any other CT scan. I know that some people do get claustrophobia in these scans and I feel for them but for me they are no problem.
The consultant urologist who performed my prostatectomy was of a very high level. In the UK there is a web page of their association which even lists the number of procedures they have done, and mine came very near the top. Always a good sign that he is in "landing recency". I came round an hour after a 3 hour procedure feeling tired but under full pain control. (Anaesthetic drug protocols have come on in leaps and bounds in the last ten years, and the reversal drugs are excellent.) Two nights in hospital, although your insurer will try for one, but if there are any complications you are going to need the hospital system around you quickly, so fight for two nights. As my surgeon said, "You'll feel ten years older for a couple of weeks," which was a good description. I went to my AirBnb with a stack of Tena pads and adult diapers and felt a bit the worse for wear. I had five small incisions in my midrif, which itched a bit.
The pain scale is often given out of ten, so you give a subjective assessment of how much pain you feel to let the staff know if you need more pain killers. On nothing more that six Panadol a day I gave it a three for two days then dropped it to a two for a week. I had a catheter in which was removed in hospital after ten days which was a minor nuisance but almost undetectable during the day. Just remember to turn the bottom tap off after you have drained the urine bag. Like landing wheels up, there are those who have done it and those who are going to do it... I was tired and under minor discomfort but nothing as bad as I had expected. Every day I felt a small improvement.
One thing is not mentioned very much in the above thread is the possibility of constipation. You do not want to be straining with the surgery that has gone on near your pelvic floor. So take those laxatives you are given, and more if you need them. There is no reason you should have to suffer from this easily fixed malady.
Now a month on, I find I have no discomfort, I have a big pile of unused Tena pads and diapers and my bladder control is as good as ever. The old fella does not wake me at 0500 as before and will not without drugs or mechanical assistance. These latter were explained to me by the above nurses and sounded like something out of a Hamburg sex club in the 1970s - allegedly. When I have built up some stamina I have been advised to try Viagara as the surgeon managed nerve sparing on one side of the prostate and it may work. As Mrs anxiao has hidden the prescription (Pprune passim) it may be a while before I can report on this...
I have noted that I feel better than I am. I went for a six mile walk today and was told when I got back that I looked dreadful, white as a ghost and ten years older. I felt weak too. So do be careful as you go through convalescence, take it easy and accept that you have taken a big hit. It takes a while. Being in UK with lockdown has helped keep me close to home but having a compromised immune system in a time of a viral pandemic is not good timing. I have got used to the self isolation.
Next is PSA test two months after the op, and then three after that. This is a big worry right now for these will show if they got all the cancer cells out. Fingers and toes are crossed for the results.
Many thanks to all the above contributions, many of which helped me through this time. As Machiavelli said, "Nothing is as bad as it seems..."
At my previous flight medical the AME suggested a digital exam and a PSA test. As it was a few years since I had had one I agreed and he reported a small protrusion on one side. The lab test came back with a PSA of 10. I am a 69 year old presenting fit, and he suggested a visit to a urologist. I agreed and the next week I was again examined this time with an ultrasound and he said that the prostate was mildly larger so recommended a course of antibiotics. I was surprised by this as was my wife comes from a country and profession where the use of antibiotics has almost been banned except for very specific reasons, and never used as a give-it-a go type of intervention. Other aspects of this specialist from my personal point of view led me to find another.
Through medical friends I was directed to a consultant at Guys Hospital in the UK. I flew the required 12 hours to get there and had an interview with this consultant urologist. Within a week I had an MRI, and a transperineal biopsy. The MRI is fine if you can stand being in a tube and clash metal bands (I told the nurse I have heard worse in a Hamburg club) and although I was stressed about the biopsy it was a non event for me. You are under a general anaesthetic, you feel nothing and wake with no chemical hangover. Afterwards you cannot even see where the needles went in. I felt a bit of a fraud for worrying about it.
The result came back as a Gleason 4-3, mostly on one side of the prostate. The surgeon urologist, being a surgeon suggested a robot guided radical prostatectomy but sent me to an onchologist who specialised in radio therapy to the discuss the other options. Together they made me realise that I had to do something, that either procedure would be equivalent in success rate, and that in the end the decision was mine. Gulp.
Somewhere in the thread above, it may be from BoeingBoy, the poster said that the decision becomes an emotional one. To me that was excellent advice. It depends on your character type as to whether you want surgery or modern radio therapy. Three days before my decide day, I was for radio therapy. Then I saw that for me, surgery would be better, but it was a stressful time, and required a lot of shaving mirror discussions.
The next stage was an interesting one for me as I was pointed in the direction of a group of people that I did not know existed, specialist urology nurses, and one very rare character, a consultant urology nurse. I am still in awe of the consummate professionalism of these women, for they were all women. They have the empathy and approachability of a nurse, with the massive knowledge base of a specialist or consultant. They ran me though the pre and post op expectations in a way that a surgeon or onchologist would mostly be unable to provide. They prepared me psychologically for the operation and the post procedure fears of incontinence and impotence that were uppermost in my mind. For the first time in many weeks I started sleeping better. If your system does not have this level of nurses on your pay grade, pay yourself. They are the pastoral care you need at this time.
To help navigate the robotic procedure I had a PSMA PET scan a week before the operation, which uses nuclear medicine to illuminate the CT scan. This gives the surgeon another tool to assist his procedure planning and is not always performed, but was requested by my surgeon. I felt no side effects from the illuminating drug and to me it was like any other CT scan. I know that some people do get claustrophobia in these scans and I feel for them but for me they are no problem.
The consultant urologist who performed my prostatectomy was of a very high level. In the UK there is a web page of their association which even lists the number of procedures they have done, and mine came very near the top. Always a good sign that he is in "landing recency". I came round an hour after a 3 hour procedure feeling tired but under full pain control. (Anaesthetic drug protocols have come on in leaps and bounds in the last ten years, and the reversal drugs are excellent.) Two nights in hospital, although your insurer will try for one, but if there are any complications you are going to need the hospital system around you quickly, so fight for two nights. As my surgeon said, "You'll feel ten years older for a couple of weeks," which was a good description. I went to my AirBnb with a stack of Tena pads and adult diapers and felt a bit the worse for wear. I had five small incisions in my midrif, which itched a bit.
The pain scale is often given out of ten, so you give a subjective assessment of how much pain you feel to let the staff know if you need more pain killers. On nothing more that six Panadol a day I gave it a three for two days then dropped it to a two for a week. I had a catheter in which was removed in hospital after ten days which was a minor nuisance but almost undetectable during the day. Just remember to turn the bottom tap off after you have drained the urine bag. Like landing wheels up, there are those who have done it and those who are going to do it... I was tired and under minor discomfort but nothing as bad as I had expected. Every day I felt a small improvement.
One thing is not mentioned very much in the above thread is the possibility of constipation. You do not want to be straining with the surgery that has gone on near your pelvic floor. So take those laxatives you are given, and more if you need them. There is no reason you should have to suffer from this easily fixed malady.
Now a month on, I find I have no discomfort, I have a big pile of unused Tena pads and diapers and my bladder control is as good as ever. The old fella does not wake me at 0500 as before and will not without drugs or mechanical assistance. These latter were explained to me by the above nurses and sounded like something out of a Hamburg sex club in the 1970s - allegedly. When I have built up some stamina I have been advised to try Viagara as the surgeon managed nerve sparing on one side of the prostate and it may work. As Mrs anxiao has hidden the prescription (Pprune passim) it may be a while before I can report on this...
I have noted that I feel better than I am. I went for a six mile walk today and was told when I got back that I looked dreadful, white as a ghost and ten years older. I felt weak too. So do be careful as you go through convalescence, take it easy and accept that you have taken a big hit. It takes a while. Being in UK with lockdown has helped keep me close to home but having a compromised immune system in a time of a viral pandemic is not good timing. I have got used to the self isolation.
Next is PSA test two months after the op, and then three after that. This is a big worry right now for these will show if they got all the cancer cells out. Fingers and toes are crossed for the results.
Many thanks to all the above contributions, many of which helped me through this time. As Machiavelli said, "Nothing is as bad as it seems..."
Last edited by anxiao; 6th Apr 2020 at 22:25.
Join Date: Mar 2002
Location: Seat 0A
Posts: 8,020
Thanks anxiao. What a fascinating and eloquent summation of your experience, and may you "become airborne 
on your 0500 departure" again soon.
Re the dreaded decision between surgery or radiation, I will always remember Boeing Boy's quote: "The sword or the death ray".
It sounds like you were (and still are) in excellent hands.
Fingers crossed, for all of us, that the @#$%^& doesn't come back.
on your 0500 departure" again soon.Re the dreaded decision between surgery or radiation, I will always remember Boeing Boy's quote: "The sword or the death ray".
It sounds like you were (and still are) in excellent hands.
Fingers crossed, for all of us, that the @#$%^& doesn't come back.
