I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error
12>

Surgery OR Hormone + Radiotherapy

Email this conversation Print this conversation
User
Posted 21 May 2022 at 15:45

I'm aged 71 and had a PSA of 10.83 followed by an MRI which showed 4 lesions in the posterior peripheral zone. Then 18 biopsy samples were taken of which I'm told about 5 contained cancer at today's results appointment. The Gleason score is 7(3+4), group 2, T2c. The consultant who is a surgeon has advised me that I need treatment: either Surgery or Hormone + Radiotherapy. The surgery option has been explained and I'm yet to see an oncologist to discuss the hormone/radiotherapy option, before making my decision. My research tells me that if the score had been 6(3+3) then monitoring rather than treatment might have been proposed, so just wondering if 7(3+4) is very borderline as regards needing treatment. I would be interested to hear the experiences of other members with similar Gleason scores please.

User
Posted 21 May 2022 at 20:19
Your results sound very similar to mine 6 years ago - except that I was then 63. I decided to go with surgery; the advice in general seems to be that if you are under 60 you will probably recover easily from surgery but it will become more difficult over 70, and I optimistically grouped myself as more like the under-60s One question for you is whether you are fit for your chronological age and likely to recover better than others.

And with the worst side effects of radiotherapy taking a long time to develop, if you are younger you are moderately likely to get them but if you are over 70 there is a likelihood you have other, or similar, problems by then anyway. Plus, if there is evidence of cancer still remaining after surgery it is still possible to have radiotherapy (which is about to happen to me) but the reverse is more difficult.

The other option in theory, not available to me due to the size of the prostate, is brachytherapy where pellets are put in you that provide very localised radiotherapy. That sounded a good solution.

The bottom line is that all of the treatments are thought to have about the same success rates in holding off recurrence, and at Gleason 7 the chances are that if you went for doing nothing immediately but monitoring changes you would need treatment anyway in a year or two. Psychologically I found it better to bite the bullet and choose a treatment rather than wait with the worry.

Good luck. It is a stressful time, and whatever treatment you choose it isn't an easy time to go through.
User
Posted 23 May 2022 at 21:08
True prostatectomy shortens the length of the urethra - but that brings the bladder closer to the pelvic floor. The urethra isn't able to slide through the pelvic floor (it is tightly attached to it where the external sphincter is) so that change won't affect the penis length.

Personally I suspect the often observed change in penis length to come down to the effect on blood flow into erectile tissues. I think all men are familiar with their penis changing size in the flaccid state - most obviously the way it shrinks with vigorous exercise or with cold (swimming in the sea around Britain being a double whammy). Although blood flow is most obviously associated with erections, those size changes involve the same mechanism, and after injury to the penile nerves the "normal" state has less blood flow thus a smaller size.

Not sure though about the consequences of HT/RT, there must be a risk to the nerves from radiotherapy but the way the standard hormone therapy works it could take a very long time to completely recover testosterone levels which are the other variable.
User
Posted 21 May 2022 at 20:34
At your age, if you don’t have treatment, the cancer will probably kill you. If you do have treatment, it almost certainly won’t. If you opt for treatment, it’s really a case of deciding which set of side-effects you find less objectionable. I went down the HT/RT route and didn’t find it too bad. As J-B says, both treatments are equally (and highly) effective.

All the best,

Chris
User
Posted 24 May 2022 at 18:09
Burghboy, I wasn't suggesting people don't experience penis shortening, that is definitely a common outcome. I was simply suggesting that the changes in nerve supply might mean the "normal" state is closer to the cold bath size than what you were used to.

If anything, the observation that some people experience a degree of recovery like Colwickchris would be consistent. A missing stretch of urethra isn't going to grow back but nerves are capable of a degree of regrowth (typically by surviving nerves branching to re-establish the connections lost due to damaged fibres). That could improve the flaccid blood flow, hence size. And probably helped by tadalafil.

The urethral sliding idea does seem to have a lot of traction on internet sites, but not in serious medical publications.
User
Posted 31 May 2022 at 09:08

My results were very similar to yours( PSA 5.76, Gleason 3 +4 =7) and though  I opted for AS I only did that for 4/5 months as when my PSA was again tested it had increased to 6.01.  For a number of reasons ( All detailed under my thread), I opted for surgery and this was carried out at Addenbrookes just before Christmas last year. Fast forward 6 months and everything is back to how it was pre-surgery (apart from the fact that I now can't ejaculate and I have a slight leakage when I lift something really heavy). In my village of fewer than 300 people, 4 (known) people have been diagnosed with prostate cancer (ranging at diagnosis from age 63 to 78), with 3 opting for surgery and 1 (who was 78) for RT. All 4 of us have had no long lasting side effects, with 2 of those who chose surgery having had it 12 years ago.  


 


Ivan 

User
Posted 21 May 2022 at 15:45

I'm aged 71 and had a PSA of 10.83 followed by an MRI which showed 4 lesions in the posterior peripheral zone. Then 18 biopsy samples were taken of which I'm told about 5 contained cancer at today's results appointment. The Gleason score is 7(3+4), group 2, T2c. The consultant who is a surgeon has advised me that I need treatment: either Surgery or Hormone + Radiotherapy. The surgery option has been explained and I'm yet to see an oncologist to discuss the hormone/radiotherapy option, before making my decision. My research tells me that if the score had been 6(3+3) then monitoring rather than treatment might have been proposed, so just wondering if 7(3+4) is very borderline as regards needing treatment. I would be interested to hear the experiences of other members with similar Gleason scores please.

User
Posted 21 May 2022 at 22:16

Generally HT is given before RT and most usually for one year up to 3 years thereafter. The standard for administering RT was 37 fractions (sessions) of RT and some hospitals still do that but increasingly it is given in 20 fractions of slightly higher dose. There are pros and cons to both surgery and RT and you may find it helpful to read or download from the Tool Kit. There is not a best treatment, but the one you feel right for you. https://shop.prostatecanceruk.org//our-publications/all-publications/tool-kit?limit=100


 

Edited by member 21 May 2022 at 22:16  | Reason: to highlight link

Barry
User
Posted 21 May 2022 at 23:23

Originally Posted by: Online Community Member


Then 18 biopsy samples were taken of which I'm told about 5 contained cancer at today's results appointment. The Gleason score is 7(3+4), group 2, T2c. ....  My research tells me that if the score had been 6(3+3) then monitoring rather than treatment might have been proposed, so just wondering if 7(3+4) is very borderline as regards needing treatment. 



 


Tonicman, in your case, the Gleason is not as significant as your other diagnostics. It is the fact that you are T2c (which means the cancer is in both sides of your prostate so of significant size) that determines that you need radical treatment. 


At 71, give the onco a chance to put their view to you. My husband had the 20 sessions of RT - it isn't like you are at the hospital all day each day - the actual radiotherapy takes about 5 minutes although you have to be there half an hour or so before.


One of the questions that you need to be sure of the answer to is what kind of prostatectomy is the surgeon offering you? With a T2c, will the op be nerve-sparing or non nerve sparing? That has a major impact on the side effects. Will it be keyhole / robotic surgery or open?  

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 22 May 2022 at 08:55

Tonicman, have you looked at Brachytherapy  (2 versions LDR - they insert radioactive seeds into your prostate and they are left in the prostate, and HDR - they insert needles with highly radioactive seeds inserted into the prostate and then removed after a time determined by the oncologist)? Not all hospitals do this, you have to ask for a referral and if the oncologist thinks you are suitable he will refer you.


Downloading the tool kit is very good advice.


There are more treatment options and your oncologist can advise you if you are suitable (proton beam - private only) HIFU (available on the NHS in some hospitals is the south of England), Nanoknife on the NHS (University College London Hospital - long wait to hear from them) and Cryotherapy.


My advice is read all the available information, discard the once that do not appeal and ask your oncologist about the ones that do appeal.


Wishing you all the best


 


 

User
Posted 22 May 2022 at 12:40
Hi Tonic man.

I had surgery in June 2020 at age 57. It is a serious surgery but of course you don't feel a thing. I recovered well and was continent immediately. One thing would say it to be a aware of the resultant length of your manhood. I was in the average range before but not now!
Unfortunately I had positive margins after surgery. So I had to go down the RT/HT route anyway. The RT for me was very easy (20 sessions). The hardest thing was getting to and from the hospital. I didn't feel like I was having treatment. The HT has been a bit of a pain but manageable. Complete loss of libido, frequent hot flushes, loss of muscle mass, and a lot of fatigue.

Best wishes for your treatment.
Jim
User
Posted 22 May 2022 at 14:05
Thanks Burghboy for sharing your experience and sorry to hear that you had to have HT/RT after the surgery - that does serve as a reminder of the possibility that surgery may not remove all the cancer. There’s obviously a stressful wait after surgery for the histology results and the first PSA test.
User
Posted 22 May 2022 at 17:24
About 30% of men who choose the surgery route go on to have a recurrence and require salvage RT/HT later.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 22 May 2022 at 17:46

I've been watching a YouTube channel, it's American, where one of the doctors regularly claims RT has improved so much in the last few years that the balance is moving towards a clear case for RT for more and more cases.   He is an Oncologist and some might say he would say that.  He also says that more drugs have been introduced in the last 10 years than in the previous 50 and the rate is increasing and that psma scans are enabling far better identification and location to enable targetting.   It started making me think my MRI/surgery experience from over 5 years ago is perhaps becoming less relevant.  A lot of studies are using data from 15years ago so you might question those too.   Although I don't like taking one persons opinion as the only story. 


My interest is that it's looking like my psa is going to carry on rising and I can probably expect salvage RT next year.   That said I'd still think a case with a lower Gleason than mine (4+4) could probably be making a good decision to have an operation.  Although mine was 4+3 before the op, they only decided it was higher when they got a better look at it.  That's something the op enables.   I also like that I can most likely have salvage RT which according to nomograms has a good chance of giving me over 6 years free of any recurrance.  I don't know what prime RT success rates are.

Edited by member 22 May 2022 at 17:48  | Reason: Not specified

User
Posted 23 May 2022 at 19:07
An RP involves shortening the length of the urethra (and hence the penis) by about 2". It doesn't grow back!

Cheers,

Chris
User
Posted 24 May 2022 at 00:08

The statistic was published recently in a BAUS report which I can't find online at the moment although it was shared on this forum.


America has published very similar stats - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3624708/ 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 24 May 2022 at 13:15

Guys 


Bollinge often comments that his surgeon owes him 2 inches of penis. I sure I read that the Retzius gave better continence recovery but did result in more shrinkage.


I watched a couple of Da Vinci operations on you tube and seem to recall the surgeon saying he released the bladder support to reduce the gap to the urethra. I think my own surgeon confirmed he did this. When needing an emergency suprapubic catheter fitted, they had to get a radiographer into the recovery room to locate the bladder, because "the bladder is moved during radical prostatectomy".


My own flaccid penile health is better now than it was post op eight years ago. I doubt I will ever regain normal erections, but with the use of the pump, injections and masturbation my swollen penis is pretty much the same as pre surgery and certainly not two inches shorter. As already said there are lots of contrasting articles written about shrinkage and recovery.


I do see guys who say they now have to sit to pee. I was advised to refrain from using the pump because of a stricture, but my surgeon did say engorging the penis was unlikely to have any effect on the joint.


Thanks Chris


 

User
Posted 31 May 2022 at 09:32
Very best wishes for your surgery, Tony. Start doing your pelvic floor exercises right away - they will be enormously beneficial post-surgery.

Best wishes,

Chris
User
Posted 24 Jun 2022 at 19:10

I am glad, Tonicman, that everything has gone well and it sounds as though your operation and post-surgery recovery was as good as mine. Certainly worth wearing the surgical stockings for 28 days and to keep up the injections.


 


All the best for your first post-operative PSA test


 


Ivan

User
Posted 24 Jun 2022 at 19:11
That's as good as it gets Tony. Hope it continues at follow up meeting.

Good luck

Cheers
Bill
User
Posted 27 Jun 2022 at 17:16

TM, I developed a stricture after RARP, my surgeon put it down to trauma as a result of the swift removal of a stuck catheter. Slow flow etc took three months to develop. Quite a few of us on here have had migration of surgical clips into the bladder or urethra the first clip was found three months after catheter removal. 


I have had extreme pain that started when urinating, it was accompanied with a swelling of the penis and was the result of puncturing of the urethra during a dilatation.


You are still healing and no doubt there is some swelling around the newly formed joint. Scabs will be forming and coming away. There may still be debris and clots in the bladder that need to come out, these can all cause a slow flow. 


If the hospital is telling you to monitor your input and output you could also time how long the output takes and monitor the flow. mils / secs equals average flow rate,I got down to 0.5 mils per second. If your flow slows to a point where you are going into retention then get help without delay. Pain in the water works is often transmitted and the problem isn't always were the pain is.


Hopefully in a few days things should improve.


Thanks Chris 

Edited by member 27 Jun 2022 at 17:17  | Reason: Spelling

User
Posted 27 Jun 2022 at 20:12
Thank you Chris for your reply. The various possibilities and suggestions you mention are helpful to know. I did not mention that when the catheter was removed I was completely dry. I am so sorry to read via your profile about your awful experiences and I do hope that things are more settled now.
Tony
User
Posted 29 Sep 2022 at 14:03
Elaine4878 - the painful urinating turned out to be caused by a UTI, not unusual after a catheter apparently. After the full 7 days of antibiotics it settled down.
Tony
User
Posted 13 Nov 2022 at 15:14

Thank you a lot may be we will choose HR+RT therapy. I will write what is happening and hope to help other people.

User
Posted 20 Nov 2022 at 00:03
Andy (SLF), it sounds as if you are in a good situation with a treatment likely to work well. Good luck!
Show Most Thanked Posts
User
Posted 21 May 2022 at 20:19
Your results sound very similar to mine 6 years ago - except that I was then 63. I decided to go with surgery; the advice in general seems to be that if you are under 60 you will probably recover easily from surgery but it will become more difficult over 70, and I optimistically grouped myself as more like the under-60s One question for you is whether you are fit for your chronological age and likely to recover better than others.

And with the worst side effects of radiotherapy taking a long time to develop, if you are younger you are moderately likely to get them but if you are over 70 there is a likelihood you have other, or similar, problems by then anyway. Plus, if there is evidence of cancer still remaining after surgery it is still possible to have radiotherapy (which is about to happen to me) but the reverse is more difficult.

The other option in theory, not available to me due to the size of the prostate, is brachytherapy where pellets are put in you that provide very localised radiotherapy. That sounded a good solution.

The bottom line is that all of the treatments are thought to have about the same success rates in holding off recurrence, and at Gleason 7 the chances are that if you went for doing nothing immediately but monitoring changes you would need treatment anyway in a year or two. Psychologically I found it better to bite the bullet and choose a treatment rather than wait with the worry.

Good luck. It is a stressful time, and whatever treatment you choose it isn't an easy time to go through.
User
Posted 21 May 2022 at 20:34
At your age, if you don’t have treatment, the cancer will probably kill you. If you do have treatment, it almost certainly won’t. If you opt for treatment, it’s really a case of deciding which set of side-effects you find less objectionable. I went down the HT/RT route and didn’t find it too bad. As J-B says, both treatments are equally (and highly) effective.

All the best,

Chris
User
Posted 21 May 2022 at 20:43

Thank you J-B, the points you make match up with the information I have been given so far. I am fit, active, in otherwise good health and, dare I say it, young for my age. I was leaning towards surgery as soon as it was explained to me, however it seems I cannot make my decision until the oncologist has discussed the HT/RT option, the appointment for which will hopefully be in no more than a couple of weeks. I will post again after that time. Best wishes for the radiotherapy.

User
Posted 21 May 2022 at 20:59

Thank you Cheshire Chris, you have confirmed my thoughts that having treatment is the only option. I was concerned that one aspect of HT/RT included treatment for 5 consecutive days, then 2 days off, continuing for four or more weeks. Obviously I'll get more detail from the oncologist but I'm wondering if this was your experience please?

User
Posted 21 May 2022 at 22:16

Generally HT is given before RT and most usually for one year up to 3 years thereafter. The standard for administering RT was 37 fractions (sessions) of RT and some hospitals still do that but increasingly it is given in 20 fractions of slightly higher dose. There are pros and cons to both surgery and RT and you may find it helpful to read or download from the Tool Kit. There is not a best treatment, but the one you feel right for you. https://shop.prostatecanceruk.org//our-publications/all-publications/tool-kit?limit=100


 

Edited by member 21 May 2022 at 22:16  | Reason: to highlight link

Barry
User
Posted 21 May 2022 at 22:24
Yes, my radiotherapy treatment was a session Monday to Friday for six and half weeks (I had 32 sessions, and one day the machine broke which added another one). I started hormone therapy six months prior to my RT and carried on for a year after, so 18 months on HT in total.

In my case RT was strongly recommended, so I didn't really have a choice in the matter. It was time-consuming, but not too awful.

Best wishes,

Chris


User
Posted 21 May 2022 at 23:05

Thanks Old Barry for your information, and the link to the tool box is particularly helpful.

User
Posted 21 May 2022 at 23:15

Thanks Chris, HT/RT clearly has a lengthy time span but obviously well worth it. The consultant seemed to have no reservations about surgery in my case which might factor in my decision.

User
Posted 21 May 2022 at 23:23

Originally Posted by: Online Community Member


Then 18 biopsy samples were taken of which I'm told about 5 contained cancer at today's results appointment. The Gleason score is 7(3+4), group 2, T2c. ....  My research tells me that if the score had been 6(3+3) then monitoring rather than treatment might have been proposed, so just wondering if 7(3+4) is very borderline as regards needing treatment. 



 


Tonicman, in your case, the Gleason is not as significant as your other diagnostics. It is the fact that you are T2c (which means the cancer is in both sides of your prostate so of significant size) that determines that you need radical treatment. 


At 71, give the onco a chance to put their view to you. My husband had the 20 sessions of RT - it isn't like you are at the hospital all day each day - the actual radiotherapy takes about 5 minutes although you have to be there half an hour or so before.


One of the questions that you need to be sure of the answer to is what kind of prostatectomy is the surgeon offering you? With a T2c, will the op be nerve-sparing or non nerve sparing? That has a major impact on the side effects. Will it be keyhole / robotic surgery or open?  

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 22 May 2022 at 08:41

Originally Posted by: Online Community Member
Yes, my radiotherapy treatment was a session Monday to Friday for six and half weeks (I had 32 sessions, and one day the machine broke which added another one). I started hormone therapy six months prior to my RT and carried on for a year after, so 18 months on HT in total.

In my case RT was strongly recommended, so I didn't really have a choice in the matter. It was time-consuming, but not too awful.

Best wishes,

Chris



I would agree with you, Cheshire Chris, though my RT was 20 visits. I had a small problem of bleeding 12 months later, caused by the RT, but that was treated & is probably as good as it ever will be now.


The choice is the longer drawn out HT & RT, or the more invasive removal - but that does normally gets it done, though sometimes some RT is also needed. Either way, as with all Cancers, early treatment is king.


BTW, I have my next PSA test this week, hopefully still well below 1.

Edited by member 22 May 2022 at 08:42  | Reason: Not specified

User
Posted 22 May 2022 at 08:55

Tonicman, have you looked at Brachytherapy  (2 versions LDR - they insert radioactive seeds into your prostate and they are left in the prostate, and HDR - they insert needles with highly radioactive seeds inserted into the prostate and then removed after a time determined by the oncologist)? Not all hospitals do this, you have to ask for a referral and if the oncologist thinks you are suitable he will refer you.


Downloading the tool kit is very good advice.


There are more treatment options and your oncologist can advise you if you are suitable (proton beam - private only) HIFU (available on the NHS in some hospitals is the south of England), Nanoknife on the NHS (University College London Hospital - long wait to hear from them) and Cryotherapy.


My advice is read all the available information, discard the once that do not appeal and ask your oncologist about the ones that do appeal.


Wishing you all the best


 


 

User
Posted 22 May 2022 at 11:07

LynEyre thank you for pointing out the significance of T2c which wasn’t mentioned at the consultation. I’m told that it would be robotic surgery and that the surgeon would try hard to avoid nerves if possible, at Eastbourne DGH they have a daVinci machine and I will check that this is what is used. Yes, 20 RT visits does give an end point and not so daunting so I will be listening carefully to the onco.

User
Posted 22 May 2022 at 11:10

bob_Suffolk & Desperate wife, thank you for the advice & info.

User
Posted 22 May 2022 at 12:40
Hi Tonic man.

I had surgery in June 2020 at age 57. It is a serious surgery but of course you don't feel a thing. I recovered well and was continent immediately. One thing would say it to be a aware of the resultant length of your manhood. I was in the average range before but not now!
Unfortunately I had positive margins after surgery. So I had to go down the RT/HT route anyway. The RT for me was very easy (20 sessions). The hardest thing was getting to and from the hospital. I didn't feel like I was having treatment. The HT has been a bit of a pain but manageable. Complete loss of libido, frequent hot flushes, loss of muscle mass, and a lot of fatigue.

Best wishes for your treatment.
Jim
User
Posted 22 May 2022 at 14:05
Thanks Burghboy for sharing your experience and sorry to hear that you had to have HT/RT after the surgery - that does serve as a reminder of the possibility that surgery may not remove all the cancer. There’s obviously a stressful wait after surgery for the histology results and the first PSA test.
User
Posted 22 May 2022 at 17:24
About 30% of men who choose the surgery route go on to have a recurrence and require salvage RT/HT later.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 22 May 2022 at 17:46

I've been watching a YouTube channel, it's American, where one of the doctors regularly claims RT has improved so much in the last few years that the balance is moving towards a clear case for RT for more and more cases.   He is an Oncologist and some might say he would say that.  He also says that more drugs have been introduced in the last 10 years than in the previous 50 and the rate is increasing and that psma scans are enabling far better identification and location to enable targetting.   It started making me think my MRI/surgery experience from over 5 years ago is perhaps becoming less relevant.  A lot of studies are using data from 15years ago so you might question those too.   Although I don't like taking one persons opinion as the only story. 


My interest is that it's looking like my psa is going to carry on rising and I can probably expect salvage RT next year.   That said I'd still think a case with a lower Gleason than mine (4+4) could probably be making a good decision to have an operation.  Although mine was 4+3 before the op, they only decided it was higher when they got a better look at it.  That's something the op enables.   I also like that I can most likely have salvage RT which according to nomograms has a good chance of giving me over 6 years free of any recurrance.  I don't know what prime RT success rates are.

Edited by member 22 May 2022 at 17:48  | Reason: Not specified

User
Posted 22 May 2022 at 22:52
Interesting Peter-2016, maybe the balance between treatments will change. Though as you say, oncologists are always more likely to recommend HT/RT and surgeons surgery.

It is one of those unalterable things in life, that any study reporting 10-year outcomes is always going to be based on treatments as they were given 10-15 years ago. While modern treatments may well have improved, there can't yet be the data to prove it.
User
Posted 23 May 2022 at 01:07

This might be relevant to you T-man.


FDA approves pet imaging drug


Accurate location of mets is  something that's improved recently with substances like Gallium 68 and it's making targeted treatment more effective.


In my own experience I had Gleason 9 with mets in nearby glands picked up and treated with RT followed by HT, the latter having now reached the 18 month mark. So far, so good with psa <0.01.


There are varying views on scans but it would be valuable for you to know what they've got planned.


 


Jules

User
Posted 23 May 2022 at 01:13
When we used to have an annual Leicester get together (pre-Covid) there was usually a guest speaker. For 2 or 3 years, we had Jamie - Si-ness's amazing onco who was willing to try early chemo before it was even a trial. He would talk about trials and research and what was emerging. We also usually had a summary of the most recent national BAUS / uro-oncology conference and I remember it being said that the view of that year's speakers was that radiotherapy would become the gold standard and future generations would be appalled that prostates were ever surgically removed!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 23 May 2022 at 04:37

Originally Posted by: Online Community Member


This might be relevant to you T-man.


FDA approves pet imaging drug


Accurate location of mets is  something that's improved recently with substances like Gallium 68 and it's making targeted treatment more effective.


In my own experience I had Gleason 9 with mets in nearby glands picked up and treated with RT followed by HT, the latter having now reached the 18 month mark. So far, so good with psa <0.01.


There are varying views on scans but it would be valuable for you to know what they've got planned.


 


Jules



Yes the FDA are a bit behind on this one, even more than NICE who like them tend to move slowly, yet the 68 Gallium PSMA scans  were done in the London area in 2018 when I had mine and possibly before that. There is now a more advanced scan that was formulated by Martin Pomper and his group at John Hopkins in the USA, where it was being trialled there and in Canada.  I don't know whether it's available in the UK yet. It's termed 18F DCFPyL 

Barry
User
Posted 23 May 2022 at 05:38

Originally Posted by: Online Community Member
When we used to have an annual Leicester get together (pre-Covid) there was usually a guest speaker. For 2 or 3 years, we had Jamie - Si-ness's amazing onco who was willing to try early chemo before it was even a trial. He would talk about trials and research and what was emerging. We also usually had a summary of the most recent national BAUS / uro-oncology conference and I remember it being said that the view of that year's speakers was that radiotherapy would become the gold standard and future generations would be appalled that prostates were ever surgically removed!


Yes, I remember those friendly meetings with guest speakers like Jane Plant and Jamie who answered questions put to them after presentations. When Prostate Cancer UK took over organizing the meeting from George, they decided not to have a speaker and I remember saying just before that this could result in a fall in attendance which is what happened.  As a consequence of this they decided to discontinue meetings. 


Certainly there have been significant advances in the way RT is administered but surgery, particularly with wider availability of the da Vinci Robot, still continues to be frequently used, particularly for younger men. Then Focal therapy, such as HIFU, Cryotherapy, Nanoknife, FLA, and Photodynamic therapy (Spectracure P18), currently being trialled, are likely to account for an increasing proportion of cases.  Surgery is not usually given where patients have advanced cancer but more drugs are being used in such cases, sometimes in combination.  Outcomes should continue to improve, especially, especially where men are diagnosed at an early stage.  


 

Barry
User
Posted 23 May 2022 at 06:58
These last few posts are interesting in relation to my original post. When I see the oncologist I think I need to ask if, prior to RT, a further scan is done to accurately locate “mets” (?).
User
Posted 23 May 2022 at 10:32

Have you already had a bone scan? If you have mets, you won't be offered RT. At least not curative RT. Your cancer would then be deemed incurable and a different treatment regime would apply.


Best wishes,


Chris

User
Posted 23 May 2022 at 10:40
Chris, no I haven't had a bone scan. I might be confused with the term "mets" - microcolei in his post above mentioned mets and I assumed this means the cancers in the prostate. My diagnosis is T2c which I understand means that the cancer 'appears' to be confined within the prostate and is in both sides of the prostate.
User
Posted 23 May 2022 at 17:35

Hi,
I had T3b, local severe, at aged 70, and definitely had to have the treatment: Brachytherapy. One big invasive radiation hit, and then six weeks of non-invasive radiation. My advice would be to have the treatment good results. The downside is the hormone Zoladex which I had for two years. So I was OK for 5 years after that but now it has come back: still at T3b local severe. Back to the Zoladex which kills your testosterone and (in my case) turns me into a kind of fatigued Zombie around 4.0 pm every day. But is has to be done and you can get by by lots of walking and early to bed. Some people are badly affected psychologically, but some hospitals offer counselling. I had a little .. it was very helpful and took some pressure off the family. Apart from the terror of having the cancer, Zoladex can give you an extra dose of depression. Nowadays there is a range of cognitive think positive don't be too hard on yourself, kind.
Cheers to all,
Otto
User
Posted 23 May 2022 at 18:15

Originally Posted by: Online Community Member
Chris, no I haven't had a bone scan. I might be confused with the term "mets" - microcolei in his post above mentioned mets and I assumed this means the cancers in the prostate.


No, "mets", short for "metastases", means spread of the cancer to places outside the organ in which it originated. Once cancer has metastasised, it then becomes incurable. 

It's common (although not universal) to have a nuclear bone scan as part of the diagnostic process to make sure that the cancer hasn't spread outside the prostate. 


Best wishes,


Chris


 

User
Posted 23 May 2022 at 19:07
An RP involves shortening the length of the urethra (and hence the penis) by about 2". It doesn't grow back!

Cheers,

Chris
User
Posted 23 May 2022 at 19:45
Please note that HT/RT can also cause a shortening and possibly a slight reduction in girth as I can personally testify. However, nobody told me about rehabilitation, so doing something about this in good time might have met with some improvement and useful erections but I think in the long term you tend to lose erections anyway.
Barry
User
Posted 23 May 2022 at 19:55

Same here, Barry. Not what it once was! To be honest I never fully recovered my libido after my HT.


Cheers,


Chris

Edited by member 23 May 2022 at 19:55  | Reason: Not specified

User
Posted 23 May 2022 at 20:45

Nope. I haven't heard that before.


Jim 👍

User
Posted 23 May 2022 at 21:08
True prostatectomy shortens the length of the urethra - but that brings the bladder closer to the pelvic floor. The urethra isn't able to slide through the pelvic floor (it is tightly attached to it where the external sphincter is) so that change won't affect the penis length.

Personally I suspect the often observed change in penis length to come down to the effect on blood flow into erectile tissues. I think all men are familiar with their penis changing size in the flaccid state - most obviously the way it shrinks with vigorous exercise or with cold (swimming in the sea around Britain being a double whammy). Although blood flow is most obviously associated with erections, those size changes involve the same mechanism, and after injury to the penile nerves the "normal" state has less blood flow thus a smaller size.

Not sure though about the consequences of HT/RT, there must be a risk to the nerves from radiotherapy but the way the standard hormone therapy works it could take a very long time to completely recover testosterone levels which are the other variable.
User
Posted 23 May 2022 at 22:36

Originally Posted by: Online Community Member
About 30% of men who choose the surgery route go on to have a recurrence and require salvage RT/HT later.


lyn, I’ve been looking for the answer to this question, so thank you. Can you point me in the right direction to the link please?

User
Posted 24 May 2022 at 00:08

The statistic was published recently in a BAUS report which I can't find online at the moment although it was shared on this forum.


America has published very similar stats - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3624708/ 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 24 May 2022 at 02:20

My apologies T-man, I had meant to address my comment to Bill the American because of US approval of Gallium marker for scans.


In your case that level of scan might not be relevant tho metastases to glands near the prostate are not easily detected by MRI scans, as I found on my path. Bone scans are a different process.


If you were to choose RT it would seem sensible to know beforehand if there's any chance of mets being present. There are scans that can do a good job of detecting these now. There's a couple of reasons behind this thought. Firstly, if you do have mets to glands, it's possible to "include" them in radio therapy, not quite so precisely as with targeting the prostate but to the extent that it has a good chance of destroying them. Secondly, there's a limit to the amount of radiation that's regarded as acceptable, so one round to treat the prostate might get close to that level and a second round to take on mets later would just add to the amount of radiation you'd been exposed to.


If you choose to go with a prostatectomy you would still have the option of having RT later if you had any form of recurrence.


I had RT/HT and I'm very happy with the results at 1.5 years. If the treatment I've received here in Australia works out as well as they believe it will I could beat this disease without having to deal with recurrence BUT that's not certain of course. I'm 75, I had 81 GY of RT in 45 fractions/sessions and I've had no lasting or new side effects since the treatment.


So again, sorry if my post was slightly OT for you but I hope this information is still useful for you.


Jules


 

User
Posted 24 May 2022 at 12:18

Interesting J-B.


I don't know how much of what you say is factually correct. One point to note is that the penis is pulled into the pelvis as well as the bladder pulled down.


Two facts I can provide are:


1/ I was warned by the NHS before the op that penis shortening was likely.


2/ I have most definitely experienced shortening. I have used daily Tadalafil and occasional pump.


I have read of loads of men that have experienced long term non recovery of penis length.


Cheers,


Jim

User
Posted 24 May 2022 at 13:15

Guys 


Bollinge often comments that his surgeon owes him 2 inches of penis. I sure I read that the Retzius gave better continence recovery but did result in more shrinkage.


I watched a couple of Da Vinci operations on you tube and seem to recall the surgeon saying he released the bladder support to reduce the gap to the urethra. I think my own surgeon confirmed he did this. When needing an emergency suprapubic catheter fitted, they had to get a radiographer into the recovery room to locate the bladder, because "the bladder is moved during radical prostatectomy".


My own flaccid penile health is better now than it was post op eight years ago. I doubt I will ever regain normal erections, but with the use of the pump, injections and masturbation my swollen penis is pretty much the same as pre surgery and certainly not two inches shorter. As already said there are lots of contrasting articles written about shrinkage and recovery.


I do see guys who say they now have to sit to pee. I was advised to refrain from using the pump because of a stricture, but my surgeon did say engorging the penis was unlikely to have any effect on the joint.


Thanks Chris


 

User
Posted 24 May 2022 at 18:09
Burghboy, I wasn't suggesting people don't experience penis shortening, that is definitely a common outcome. I was simply suggesting that the changes in nerve supply might mean the "normal" state is closer to the cold bath size than what you were used to.

If anything, the observation that some people experience a degree of recovery like Colwickchris would be consistent. A missing stretch of urethra isn't going to grow back but nerves are capable of a degree of regrowth (typically by surviving nerves branching to re-establish the connections lost due to damaged fibres). That could improve the flaccid blood flow, hence size. And probably helped by tadalafil.

The urethral sliding idea does seem to have a lot of traction on internet sites, but not in serious medical publications.
User
Posted 30 May 2022 at 15:29

Thank you to all the community members who have replied to my initial post, the advice and feedback from individual’s  experiences has been very helpful. I have now had a discussion with the oncologist who has confirmed that the cancer is localised and that RT would be 6 months of hormone treatment followed by 4 weeks of radiotherapy. I have decided to have the surgery and surprisingly the procedure is to be in less than 3 weeks time. I intend to add to this thread post treatment as I can see how valuable the sharing of experiences on this community is.
Tony

User
Posted 31 May 2022 at 09:08

My results were very similar to yours( PSA 5.76, Gleason 3 +4 =7) and though  I opted for AS I only did that for 4/5 months as when my PSA was again tested it had increased to 6.01.  For a number of reasons ( All detailed under my thread), I opted for surgery and this was carried out at Addenbrookes just before Christmas last year. Fast forward 6 months and everything is back to how it was pre-surgery (apart from the fact that I now can't ejaculate and I have a slight leakage when I lift something really heavy). In my village of fewer than 300 people, 4 (known) people have been diagnosed with prostate cancer (ranging at diagnosis from age 63 to 78), with 3 opting for surgery and 1 (who was 78) for RT. All 4 of us have had no long lasting side effects, with 2 of those who chose surgery having had it 12 years ago.  


 


Ivan 

User
Posted 31 May 2022 at 09:32
Very best wishes for your surgery, Tony. Start doing your pelvic floor exercises right away - they will be enormously beneficial post-surgery.

Best wishes,

Chris
User
Posted 24 Jun 2022 at 18:03
Well I had the surgery 10 days ago on 15 June: robotic assisted radical prostatectomy. It was “uneventful” and “went to plan”, which I will take as went well, and was bilateral nerve sparing (given 3 month prescription of Sildenafil 25mg). Interesting that my discharge letter stated the diagnosis as Right G (3+3), Left G (3+4) which gives more detail to my overall diagnosis of 7 (3+4). The surgeon said there was some inflammation on the left which was not elaborated on. The catheter was removed today after 10 days, thankfully no more than just a strange sensation as it was pulled out, a little concern that 44ml of urine was left in my bladder at end of the trial without catheter - I have to keep an eye on peeing normally. I was discharged 30 hours after surgery and I inject myself with blood thinner syringes for 28 days post op, advised to wear the TED stockings for same length of time. Next appointment is histology results which could be 6 - 8 weeks due to backlog, obviously my hope is that this will say the cancer cells were all contained, PSA test in 3 months. I felt pretty ropey for the first 9 days but this was due to almost total lack of sleep with the restriction of the catheter.
Tony
User
Posted 24 Jun 2022 at 19:10

I am glad, Tonicman, that everything has gone well and it sounds as though your operation and post-surgery recovery was as good as mine. Certainly worth wearing the surgical stockings for 28 days and to keep up the injections.


 


All the best for your first post-operative PSA test


 


Ivan

User
Posted 24 Jun 2022 at 19:11
That's as good as it gets Tony. Hope it continues at follow up meeting.

Good luck

Cheers
Bill
User
Posted 27 Jun 2022 at 16:22
Wondering if anyone else has had this post-catheter issue. Now 3 days after catheter removal peeing has become painful (an ache not burning) and only small amounts of around 100ml each time, with weak flow. Over 24 hours I took in 2.2 litres of mainly water but the output was 1.3L. A bladder scan at the hospital showed 160ml left in bladder after peeing. One of the consultants said that the pre-surgery MRI showed a blockage in the prostate area, so I am to continue recording input/output for another 3 days (this will be 14 days from the prostatectomy) then a follow up to see if it’s settled down. I feel there is some sort of constriction which is worrying me a lot.
User
Posted 27 Jun 2022 at 17:16

TM, I developed a stricture after RARP, my surgeon put it down to trauma as a result of the swift removal of a stuck catheter. Slow flow etc took three months to develop. Quite a few of us on here have had migration of surgical clips into the bladder or urethra the first clip was found three months after catheter removal. 


I have had extreme pain that started when urinating, it was accompanied with a swelling of the penis and was the result of puncturing of the urethra during a dilatation.


You are still healing and no doubt there is some swelling around the newly formed joint. Scabs will be forming and coming away. There may still be debris and clots in the bladder that need to come out, these can all cause a slow flow. 


If the hospital is telling you to monitor your input and output you could also time how long the output takes and monitor the flow. mils / secs equals average flow rate,I got down to 0.5 mils per second. If your flow slows to a point where you are going into retention then get help without delay. Pain in the water works is often transmitted and the problem isn't always were the pain is.


Hopefully in a few days things should improve.


Thanks Chris 

Edited by member 27 Jun 2022 at 17:17  | Reason: Spelling

User
Posted 27 Jun 2022 at 20:12
Thank you Chris for your reply. The various possibilities and suggestions you mention are helpful to know. I did not mention that when the catheter was removed I was completely dry. I am so sorry to read via your profile about your awful experiences and I do hope that things are more settled now.
Tony
User
Posted 29 Sep 2022 at 10:28

UPDATE 3 months after RARP. Seven weeks after surgery I had been told by the surgeon that the cancer had been contained within the prostate and not near the edges, which was good news. Also, the post-op diagnosis was now increased from 7 (3+4) to 7 (4+3), which, in the words of the surgeon, confirmed that surgery was a good decision. Today, my first 3 month PSA test is 0.03 as I read it, however the surgeon tells me that it is in fact “less than 0.03 and as good as it gets”. I think that this shows, in my case anyway, that the MRI and biopsies were accurate in indicating that the cancer cells were contained and not near the edges, which might be useful information for anyone at that stage of diagnosis.

User
Posted 29 Sep 2022 at 12:57

Great news tonicman. Long may it continue. Did you ever get to the bottom of the painful urinating after surgery? Was is just part of the healing process maybe?


Best of luck going forward 

 
Forum Jump  
12>
Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.




MenuTop ▲
©2024 Prostate Cancer UK