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User
Posted 09 Jan 2021 at 12:57

I've just turned 50 & unfortunately I'm having a prostectormy this month.  I'm never going to ejactlate again but when I dry cum will my penis still pump like it would normally before it ejaculates??? 

User
Posted 09 Jan 2021 at 13:49
In my experience it took quite a long time before I got the true return of pumping whilst having an orgasm. When the prostate is removed it takes a long time for the muscles etc to reform in the area and create a normal system. Similarly although I got erections quickly after surgery with the pump and tablets and injections etc , it took over two years to get the proper “ root “ of my penis back within me which gives it the solidness you need for proper penetration . Strangely I have loads of pre-cum these days — way more than before. I was 48 at surgery so I feel for you. I still grieve the loss tbh. Click my picture and read my profile if you want

If life gives you lemons , then make lemonade

User
Posted 09 Jan 2021 at 14:34

Mickey,

the intensity of the dry orgasm may change from how the wet orgasm was.  Some guys say their orgasm is weak, others say painful. Mine are out of this world.

Hope all goes well.

Thanks Chris

 

User
Posted 09 Jan 2021 at 14:46
Pre-cum is produced in a separate gland called the Cowper’s gland further down the urethra. Don’t be sorry. It’s just how it is !! If they get all your cancer out you have a great chance of a long life , and if you REALLY put the effort in like me there is a chance that you can resume excellent function. Yes it takes plenty of time and effort but my function is totally fantastic again now honestly. If only they’d got the cancer !!

Best wishes

If life gives you lemons , then make lemonade

User
Posted 09 Jan 2021 at 18:31
You can Mickey. It’s not a nice journey but you can cope ok. Hopefully they get it all out , and save some nerves ( you need to ask so you’re not on a wild goose chase for recovery ). Then you may be in the excellent position I’m in now recovery-wise , except without the cancer !! Work hard at recovery if you want it. The time passes more quickly than you think. Good luck

If life gives you lemons , then make lemonade

User
Posted 10 Jan 2021 at 02:49

Hi Mickey, do you know what number your PSA is? Has any one told you your staging, usually T, N and M all followed by a number and sometimes a letter. Do you know your gleason score? You seem to have doubts about the surgery and the negative side effects and quite reasonably so. There may be other options such as brachytherapy, these might have been ruled out by the medical team as not suitable for you, but have they been discussed? Before your surgery you have to give consent, but importantly it should be informed consent. You have certainly done the right thing by coming to this website to get more information. If you can post details about your psa, staging and gleason score, and what if any other treatments were offered we might be able to suggest questions you should ask in the zoom meeting. 

Dave

User
Posted 10 Jan 2021 at 08:40
Don’t quote me but it seems the younger men seem to recover from incontinence very quickly these days. I was mostly dry from the day the catheter was removed ( they dragged me outdoors into the sun with hospital pyjamas on , and I think the fear of peeing myself in public sorted it haha :-) )

I was totally dry both night and day at around 3 months.

If life gives you lemons , then make lemonade

User
Posted 10 Jan 2021 at 09:49

Hi Mickey,

Your random blood test sounds like mine - thank goodness my sister asked me to get my cholesterol checked.   I don't regret the prostatectomy at all, for me it seemed the best way to set set my mind at rest in the far future, but everyone's decision is their own. Blood tests clear so far, hurrah, so we hope the cancer's gone with the prostate, and if not - well I'm getting regular tests, and in the hands of the experts. Am now 54.

 

Anyway,  a personal experience ten months post-op, for what it's worth.  Holding your water takes a bit of practice once the catheter is out, but I only ever needed the twenty pads I was sent.

Re erections -

Months 1-5 zilch. Dry orgasms when limp feeble, so no real urge to have em

Months 4-7 some increase in size possible but no actual erection  (on prescribed Viagra)

Months 7-9 started using prescribed vacuum pump and prescribed Cialis. Erection inside vacuum pump as big as ever but no actual lift once out. An ego boost,  anyway

Month 10 started ending pump sessions a few times a week by slipping on one of the rings supplied.  Got a 45 degree erection without a pill, 90 degrees with.   

I had erections when I woke for the first time on 7th and 8th of January,  so it's a slow process but it does go well for many.  As Chris says, you've got to put the work in.

 

To answer your question,  orgasms when limp were feeble for me; without a ring on almost as before, but fully hard with the ring, like the best pumping orgasm of my youth but three times longer (so long as it's not every day, or week!) Needless to say I'm far luckier than so many in all these ways, so am counting my blessings.  Other people's experience will be different, obviously.

Best wishes,  whatever you do, KC

 

 

Edited by member 10 Jan 2021 at 11:30  | Reason: Wrong date given, and punctuation

RP 07.03.20, PSA 4.1, Gleason 3+4=7 

User
Posted 10 Jan 2021 at 11:05

Hi Mickey. I've been here for over 18 months now following RP. I can report that dry orgasms are fantastic. It is the lack of total erection that is infuriating. They are improving with daily pump use and daily 5mg Tadalafil and Sildenafil for events ( there is quite a lot of chat about this on this site for more detail). The last 6 months have shown improvement over the 1st year. I am sorry to say that for a lot of people even with partial nerve sparing ,this side of your life may require significant effort. Wishing you all the best.

User
Posted 10 Jan 2021 at 14:51

Originally Posted by: Online Community Member

There saying to me prostectormy as I'm 50 & radiotherapy may give me cancer at 60! 

Yes. Since you're "only" 50 they usually steer you towards surgery. When I was deciding (also aged 50), the oncologist said to me "before I tell you anything about radiotherapy I have to say that surgery is almost certainly your best option". 

The reason he gave was "since we expect you to live 25+ years you would almost certainly have adverse long-term effects from RT." He didn't specify bowel cancer at the time, but I found that out later from these forums.

Surgery felt like the right option to me straight away. I only went to the onco appointment to make sure I had all the facts. I'd pretty much already decided. I found the idea of hormones very offputting.

Hope your pre-op goes well.

 

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User
Posted 10 Jan 2021 at 16:23

Hi Mickey,

Those figures are useful. Gleason 7 means it is not extremely aggressive, but it is sufficiently aggressive that it needs treatment fairly soon. T3 and 85% means it has grown to a reasonable size and has breached the prostate wall, so it has not spread significantly (it is all contained within one lump but it is a biggish lump). The PSA is not very high which is good news, that on its own would suggest it was not an aggressive cancer and has not spread, however the other information suggests the opposite so we will have to assume a medium aggressiveness and a largish cancer but all contained in one lump.

I think I am right in saying any focal therapy such as HIFU or Cryotherapy would be unlikely to work as the cancer is too large. Prostatectomy is a good option but there is the possibility of leaving cancer cells in the prostate bed (the area around the prostate, this is because T3 means the cancer has already breached the prostate wall). If after the surgery you still have a psa over 0.1 and rising it means that some cancer cells were left behind and you will need further treatment probably radiotherapy to kill them.

None of your medics have suggested spread to lymph nodes, or spread to bones or other organs, this is all good news. There is always the possibility of undetectable spread of the cancer this is called micro metastasis (mico-mets), none of us who have had treatment know whether this has happened to us we all hope it hasn't; if it has the cancer will reappear in some part of the body, in either months, years or decades and it will be impossible to kill it, but may be kept under control for a few years by more and more aggressive drugs. There is no point in worrying about micomets, it has either happened or it hasn't you are best assuming it hasn't and plan your treatment based on that assumption.

Surgery is one option for you. If it gets all the cancer you are cured if it doesn't you have the option of radiotherapy later to try and get the remainder. with one side of your prostate almost clear of cancer they may be able to save the nerves on that side and sexual function should be possible (ask them if it will be nerve sparing). Incontinence is a possibility but most people who post here seem to have been able to recover successfully.

Three types of radiotherapy are possible:

Brachytherapy seeds (LDR) may be a possibility, it depends on whether it is available at your hospital. The fact it has not been mentioned may mean it is not suitable for some clinical reason, but you should probably ask if it is an option.

Brachytherapy needles (HDR) may be a possibility, it depends on whether it is available at your hospital. The fact it has not been mentioned may mean it is not suitable for some clinical reason, but you should probably ask if it is an option.

External Beam Radiotherapy (EBRT) may be a possibility, most hospitals have access to the equipment for this. This treatment covers a wider area then Brachytherapy so has the potential to do damage to other part of the body such as the colon, it has the advantage that it can get in to the prostate bed and nearby lymph nodes, so if there is any spread of cancer it may kill it before it spreads further.

If you go for one of the brachytherapies EBRT may be given as well but at a reduced dose, just to catch any cells missed by the brachy. 

If you go for any of the Radiotherapy options Hormone Therapy (Androgen Deprivation Therapy) may also be given for anything between six months and three years, this weakens the cancer cells and makes them more susceptible to radiation. ADT has side effects but they usually finish after the ADT stops.

All the radiotherapy options may have side effects such as ED, incontinence etc. but they may not show for many years probably ten years or may not happen at all. If surgery has side effects they will happen pretty much immediately.

It is not easy to make a decision, and it seems your medics have already decided surgery is best for you, so I would probably go with that, but the idea of this post is to give you more information so your decision is informed rather than just blind.

Edited by member 10 Jan 2021 at 16:24  | Reason: Not specified

Dave

User
Posted 12 Mar 2021 at 03:14

I just subscribed here and saw your post, I don't know if your prostate is operated on but I'll try to give you my point of view if it helps. I had a robot assisted total prostatectomy 2 years ago and this issue worried me a lot before the surgery.

The dry orgasm is very surprising and very weird at the beginning, I obviously don't have the pleasant feeling of tension and of semen rising in my penis at the beginning, just before when we say "oh yes it comes", there it is It's more like a slight tingling and then my penis will start pumping rhythmically like before. The reflex is very present and the spasms are as numerous and powerful as before, the fact that there is no liquid passing through the urethra takes away a lot of sensation.

The fact of not seeing the semen squirt from my penis takes away from the quality of the experience but it is the new reality for us men who no longer have a prostate. The only positive aspect is that there is no big mess to clean up after the fun time.

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User
Posted 09 Jan 2021 at 13:49
In my experience it took quite a long time before I got the true return of pumping whilst having an orgasm. When the prostate is removed it takes a long time for the muscles etc to reform in the area and create a normal system. Similarly although I got erections quickly after surgery with the pump and tablets and injections etc , it took over two years to get the proper “ root “ of my penis back within me which gives it the solidness you need for proper penetration . Strangely I have loads of pre-cum these days — way more than before. I was 48 at surgery so I feel for you. I still grieve the loss tbh. Click my picture and read my profile if you want

If life gives you lemons , then make lemonade

User
Posted 09 Jan 2021 at 13:57

How are you able to have pre cum? Did you have all your prostate removed? They've told me there'll never be cum again as the pipes will be cut.

Thanks for your reply though,  I'm really feeling my loss.

User
Posted 09 Jan 2021 at 14:06

I'm unable to send u a private msg as I've just joined but I've read your story,  I'm so sorry. 

User
Posted 09 Jan 2021 at 14:34

Mickey,

the intensity of the dry orgasm may change from how the wet orgasm was.  Some guys say their orgasm is weak, others say painful. Mine are out of this world.

Hope all goes well.

Thanks Chris

 

User
Posted 09 Jan 2021 at 14:46
Pre-cum is produced in a separate gland called the Cowper’s gland further down the urethra. Don’t be sorry. It’s just how it is !! If they get all your cancer out you have a great chance of a long life , and if you REALLY put the effort in like me there is a chance that you can resume excellent function. Yes it takes plenty of time and effort but my function is totally fantastic again now honestly. If only they’d got the cancer !!

Best wishes

If life gives you lemons , then make lemonade

User
Posted 09 Jan 2021 at 15:57

Mine was a random blood test, psa was high & from there 4 weeks later told i have cancer.  I have not 1 symptom so I'm stuck on 'there going to butcher me' where as everyone around me is 'no mickey, there going to save ur life'  this is the 1st time I've looked at anything 'cancer' & my op is 12 days away, not that I'm counting!

User
Posted 09 Jan 2021 at 16:22
Do you know if it’s going to be nerve sparing or partial or non nerve sparing. ??

It’s important !

If life gives you lemons , then make lemonade

User
Posted 09 Jan 2021 at 17:03

The surgeon says he always tries to save the nerves if he can & because I'm 50 he'll try save what he can BUT he gave me the analogy of my prostate is like an onion & until he peels back the outer layer brown skin & looks inside he can't tell me how bad it is, if theres anything to save. 

They spoke 'psychology' to me the other day, about bits of cancer being left, well I'd never thought about that,  they said get it out your cancers gone!! I dont need to tell you,  I couldn't fight like you have.

User
Posted 09 Jan 2021 at 18:31
You can Mickey. It’s not a nice journey but you can cope ok. Hopefully they get it all out , and save some nerves ( you need to ask so you’re not on a wild goose chase for recovery ). Then you may be in the excellent position I’m in now recovery-wise , except without the cancer !! Work hard at recovery if you want it. The time passes more quickly than you think. Good luck

If life gives you lemons , then make lemonade

User
Posted 09 Jan 2021 at 23:37

They tell me I have a battle ahead of me & I need to work hard. I've not watched anything about recovery,  i have a zoom session this Thursday but what are they talking about,  a battle to learn to wee again & not wet myself or a battle to get a hard on? Is this what there on about? 

User
Posted 10 Jan 2021 at 02:49

Hi Mickey, do you know what number your PSA is? Has any one told you your staging, usually T, N and M all followed by a number and sometimes a letter. Do you know your gleason score? You seem to have doubts about the surgery and the negative side effects and quite reasonably so. There may be other options such as brachytherapy, these might have been ruled out by the medical team as not suitable for you, but have they been discussed? Before your surgery you have to give consent, but importantly it should be informed consent. You have certainly done the right thing by coming to this website to get more information. If you can post details about your psa, staging and gleason score, and what if any other treatments were offered we might be able to suggest questions you should ask in the zoom meeting. 

Dave

User
Posted 10 Jan 2021 at 08:40
Don’t quote me but it seems the younger men seem to recover from incontinence very quickly these days. I was mostly dry from the day the catheter was removed ( they dragged me outdoors into the sun with hospital pyjamas on , and I think the fear of peeing myself in public sorted it haha :-) )

I was totally dry both night and day at around 3 months.

If life gives you lemons , then make lemonade

User
Posted 10 Jan 2021 at 09:49

Hi Mickey,

Your random blood test sounds like mine - thank goodness my sister asked me to get my cholesterol checked.   I don't regret the prostatectomy at all, for me it seemed the best way to set set my mind at rest in the far future, but everyone's decision is their own. Blood tests clear so far, hurrah, so we hope the cancer's gone with the prostate, and if not - well I'm getting regular tests, and in the hands of the experts. Am now 54.

 

Anyway,  a personal experience ten months post-op, for what it's worth.  Holding your water takes a bit of practice once the catheter is out, but I only ever needed the twenty pads I was sent.

Re erections -

Months 1-5 zilch. Dry orgasms when limp feeble, so no real urge to have em

Months 4-7 some increase in size possible but no actual erection  (on prescribed Viagra)

Months 7-9 started using prescribed vacuum pump and prescribed Cialis. Erection inside vacuum pump as big as ever but no actual lift once out. An ego boost,  anyway

Month 10 started ending pump sessions a few times a week by slipping on one of the rings supplied.  Got a 45 degree erection without a pill, 90 degrees with.   

I had erections when I woke for the first time on 7th and 8th of January,  so it's a slow process but it does go well for many.  As Chris says, you've got to put the work in.

 

To answer your question,  orgasms when limp were feeble for me; without a ring on almost as before, but fully hard with the ring, like the best pumping orgasm of my youth but three times longer (so long as it's not every day, or week!) Needless to say I'm far luckier than so many in all these ways, so am counting my blessings.  Other people's experience will be different, obviously.

Best wishes,  whatever you do, KC

 

 

Edited by member 10 Jan 2021 at 11:30  | Reason: Wrong date given, and punctuation

RP 07.03.20, PSA 4.1, Gleason 3+4=7 

User
Posted 10 Jan 2021 at 11:05

Hi Mickey. I've been here for over 18 months now following RP. I can report that dry orgasms are fantastic. It is the lack of total erection that is infuriating. They are improving with daily pump use and daily 5mg Tadalafil and Sildenafil for events ( there is quite a lot of chat about this on this site for more detail). The last 6 months have shown improvement over the 1st year. I am sorry to say that for a lot of people even with partial nerve sparing ,this side of your life may require significant effort. Wishing you all the best.

User
Posted 10 Jan 2021 at 12:50

Thanks for all that, my PSA is/was 6.8, my Gleason score of 7 & I'm T3, what ever all that means.  My right side of my prostate has 85% cancer, my left 1% & they havent mentioned the treatment you mentioned,  my 2 choices are prostectormy ( booked in 21st) or radiotherapy.  I'm running out of time to find an alternative & my wife is a nurse! So the choice is kinda ours more than mine!! Like I said, I see them butchering me but she sees there saving my life but I have a really bad year mentally & I'm not surprised its  ending like this!!!

User
Posted 10 Jan 2021 at 13:32
The Nhs ,saving your life is the way to look at it , it helped me immensely knowing other guys that have been thru the treatment , I had HT/RT finished jan 2019 . In my limited knowledge this cancer can be successfully dealt with , in a bizarre way I found the whole journey quite interesting ! And what the oncologist said to me is the way it’s working out for me , psa tests every 6 months and my psa will rise as long as it gradual it’s acceptable , had last test early dec 0.14 next test June 2021 , so enjoying life in COVID times .
User
Posted 10 Jan 2021 at 13:52

There saying to me prostectormy as I'm 50 & radiotherapy may give me cancer at 60! Those seem to be the only 2 choices & it all kicks off tomorrow with pre op & self isolate from Thursday so I've ran out of time although I will b speaking about focal therapy & brachy therapy with my cancer nurse tomorrow!

User
Posted 10 Jan 2021 at 14:42

I've no idea what the pump sessions or rings are, I have heard of the tablets but I'm guessing this is the treats I have in store.  

User
Posted 10 Jan 2021 at 14:48

Basically the pump helps you get the erections and the ring is then slipped onto the penis base to hold the blood in and keep it hard.

 

They say its good to use the pumps to keep the blood flow because as they say "use it or loose it"

User
Posted 10 Jan 2021 at 14:51

Originally Posted by: Online Community Member

There saying to me prostectormy as I'm 50 & radiotherapy may give me cancer at 60! 

Yes. Since you're "only" 50 they usually steer you towards surgery. When I was deciding (also aged 50), the oncologist said to me "before I tell you anything about radiotherapy I have to say that surgery is almost certainly your best option". 

The reason he gave was "since we expect you to live 25+ years you would almost certainly have adverse long-term effects from RT." He didn't specify bowel cancer at the time, but I found that out later from these forums.

Surgery felt like the right option to me straight away. I only went to the onco appointment to make sure I had all the facts. I'd pretty much already decided. I found the idea of hormones very offputting.

Hope your pre-op goes well.

 

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User
Posted 10 Jan 2021 at 16:23

Hi Mickey,

Those figures are useful. Gleason 7 means it is not extremely aggressive, but it is sufficiently aggressive that it needs treatment fairly soon. T3 and 85% means it has grown to a reasonable size and has breached the prostate wall, so it has not spread significantly (it is all contained within one lump but it is a biggish lump). The PSA is not very high which is good news, that on its own would suggest it was not an aggressive cancer and has not spread, however the other information suggests the opposite so we will have to assume a medium aggressiveness and a largish cancer but all contained in one lump.

I think I am right in saying any focal therapy such as HIFU or Cryotherapy would be unlikely to work as the cancer is too large. Prostatectomy is a good option but there is the possibility of leaving cancer cells in the prostate bed (the area around the prostate, this is because T3 means the cancer has already breached the prostate wall). If after the surgery you still have a psa over 0.1 and rising it means that some cancer cells were left behind and you will need further treatment probably radiotherapy to kill them.

None of your medics have suggested spread to lymph nodes, or spread to bones or other organs, this is all good news. There is always the possibility of undetectable spread of the cancer this is called micro metastasis (mico-mets), none of us who have had treatment know whether this has happened to us we all hope it hasn't; if it has the cancer will reappear in some part of the body, in either months, years or decades and it will be impossible to kill it, but may be kept under control for a few years by more and more aggressive drugs. There is no point in worrying about micomets, it has either happened or it hasn't you are best assuming it hasn't and plan your treatment based on that assumption.

Surgery is one option for you. If it gets all the cancer you are cured if it doesn't you have the option of radiotherapy later to try and get the remainder. with one side of your prostate almost clear of cancer they may be able to save the nerves on that side and sexual function should be possible (ask them if it will be nerve sparing). Incontinence is a possibility but most people who post here seem to have been able to recover successfully.

Three types of radiotherapy are possible:

Brachytherapy seeds (LDR) may be a possibility, it depends on whether it is available at your hospital. The fact it has not been mentioned may mean it is not suitable for some clinical reason, but you should probably ask if it is an option.

Brachytherapy needles (HDR) may be a possibility, it depends on whether it is available at your hospital. The fact it has not been mentioned may mean it is not suitable for some clinical reason, but you should probably ask if it is an option.

External Beam Radiotherapy (EBRT) may be a possibility, most hospitals have access to the equipment for this. This treatment covers a wider area then Brachytherapy so has the potential to do damage to other part of the body such as the colon, it has the advantage that it can get in to the prostate bed and nearby lymph nodes, so if there is any spread of cancer it may kill it before it spreads further.

If you go for one of the brachytherapies EBRT may be given as well but at a reduced dose, just to catch any cells missed by the brachy. 

If you go for any of the Radiotherapy options Hormone Therapy (Androgen Deprivation Therapy) may also be given for anything between six months and three years, this weakens the cancer cells and makes them more susceptible to radiation. ADT has side effects but they usually finish after the ADT stops.

All the radiotherapy options may have side effects such as ED, incontinence etc. but they may not show for many years probably ten years or may not happen at all. If surgery has side effects they will happen pretty much immediately.

It is not easy to make a decision, and it seems your medics have already decided surgery is best for you, so I would probably go with that, but the idea of this post is to give you more information so your decision is informed rather than just blind.

Edited by member 10 Jan 2021 at 16:24  | Reason: Not specified

Dave

User
Posted 10 Jan 2021 at 17:06

Thanks for such a detailed answer & to everyone who's took the time to answer my question.  Surgery it is, preop 2morow & staying in from Thursday,  well now really.  My wifes a nurse & as I've stuck my head in the sand for the last 6 weeks shes been involved in every conversation with nurses & doctors & she's looked up all these other therapys. Since they gave me the diagnosis & said surgery that's been her number 1 choice,  the medical professionals recommended it. Thanks

User
Posted 10 Jan 2021 at 18:35
Sounds a plan , even thou I went down the ht/rt route , I personally know three guys who had prostate removed one had to have extra rt , 2 had a successful out come all 3 are going along fine couple of years down the track .
User
Posted 11 Jan 2021 at 00:21
Mickey, I think one of the difficult things to get your head around is separating orgasm from erection. Once the catheter is removed, you should be able to orgasm even when completely soft although it will be by oral sex or masturbation with a lot of lube. To begin with, many men find dry orgasm very painful but it seems that for most, that eventually gets better. Like others have said above, dry orgasm can be intense and my husband, who had never had a multiple orgasm before his RP, now comes two or three times each time.

Not many men experience pre-cum post-op. As CJ says, this is a sort of lubricant from the Cowpers gland. Some men notice that there is moisture when they are having sex but it is more likely to be urine leakage than anything else.

It is great that your wife and doctors have agreed that surgery is the right choice for you but it is also important that you have a good understanding of what will happen. I have been a member here for a long time and it seems to me that the men who struggle most after treatment are the ones who didn't have a full understanding of the potential side effects and what life might be like. Not being able to get an erection is one thing, but for many men this means totally .... not just 'not being able to get it up' when you feel randy but no night erections, the penis will usually be shorter and thinner after the op, and so on. NHS statistics say that about 90% of men can get an erection 12 months after the RP either naturally or by using a vacuum pump, tablets or injections - that means that about 10% of men never have an erection again. Also, getting an erection and getting an erection hard enough for penetration are different things. In terms of incontinence, the stats are that 90% of men are using one continence pad per day or less at 12 months, which sounds okay unless you like wearing light coloured trousers, are a naturist, or are in the 10% of men who have to wear pads all the time.

In all likelihood, you will be lucky and will be dry within a few weeks of the op and able to get an erection (on your own or with medication) at some point in the future. But that may be why the doctors want to talk to you about psychology - to make sure you are realistic about the risks?

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

User
Posted 11 Jan 2021 at 00:24
Also, when you speak to the nurse tomorrow do ask whether your op is going to be nerve-sparing - my guess from your diagnostics is that the urologist will try to save the nerves on one side but is taking the nerves on the side where the % cancer was high. Partial nerve sparing makes erectile recovery more of a challenge but is doable; total nerve removal means that you would not be able to have natural erections in the future.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 11 Jan 2021 at 13:04

You are right, I've not a clue what to expect. 

I went for my preop today,  my operation on the 21st is cancelled,  I can't tell u how angry that made me. I got cancer for my 50th & i didnt say i got covid for Christmas,  unfortunately that's not a joke! I did get both for those special occasions & at preop they said i now have to wait 6 weeks!! The surgeon wanted me in before Christmas then between Christmas and new year but they got hold of me on the 4th ( as planned) the surgeon was quite insistent that it's this month as he doesnt want my cancer to break though my prostate,  I'm already bordering on T3 ( which I believe is it's broken the prostate) so it looks like an mri on the private ( £335) to make sure it's still contained & if it had at least the operations off!! ( I took the death comment off sorry! Thoughtless)

Edited by member 11 Jan 2021 at 14:53  | Reason: Not specified

User
Posted 11 Jan 2021 at 13:11
Hey mate you’re miles away from death but agree action is needed. Look after yourself mentally and try not to panic. Best wishes

If life gives you lemons , then make lemonade

User
Posted 11 Jan 2021 at 18:51
Have you been cancelled because your Covid test came back positive? If so, annoying though it is, cancelling is absolutely the right decision because of the risk you'd pose to others in hospital.

Prostate cancer is very slow-growing. A delay of a few weeks isn't going to make any difference to the outcome.

Best wishes,

Chris

User
Posted 12 Jan 2021 at 00:04

I got cancelled because I HAD covid, past tenths, I had it at Christmas & was aloud out from 28th December.  Theres been a new policy come in today, if you've HAD covid you have to wait 6 weeks to have your operation.  I've been telling my wife that there'd never cancel my operation,  its cancer, it top trumps everything! So i keep getting told,  gutted, where my wife's concerned I've never been wrong b4!!!! 

The focal therapy guy rang tonight,  I'd filled a form in the other night on line, I let him talk to my wife as even if i liked the idea she would have to be into it or it wouldnt go far! Shes a nurse & goes on clinically proven treatments, that's why she wanted me to have a prostectormy,  that was the number 1 choice of my cancer team, medical professionals.  It would cost £13000 which we dont have but he made it sound a treatment with not a lot of side effects, what do you think?? I have read Lynes stuff & my wife is going to be studying everything Wednesday.  Has anyone had it instead of a radical surgery???

User
Posted 12 Jan 2021 at 10:18
Yes it is cancer but it isn't a cancer that has to be treated urgently so it doesn't trump the risk of you giving Covid to the doctors, nurses or other patients. The delay will give you more time to find out what you need to know about the treatments and risks. I get the whole thing about you putting your head in the sand and your wife being a nurse but if you go for a treatment simply because your wife decided it was the right one, and then it goes wrong and you need further treatment or are left with horrible side effects, that could have serious implications for your relationship. My husband rushed into surgery indecently quickly, choosing to believe that he wouldn't get any of the side effects, and I was angry and resentful for many years. It really needs to be a joint decision between you.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 12 Jan 2021 at 11:19

By the time I'd have had my operation I'd have clear or covid for a month!! Mild cough was my symptom & as I said, been clear since December 28th. 

I'm considering focal therapy now, what do we think????

User
Posted 12 Jan 2021 at 11:59
HIFU doesn't have a great track record as a primary treatment, which is why the NHS don't offer it. If you do have it, presumably privately, you should be aware that it would probably need to be repeated at quite regular intervals, and the financial implications of that. It's perhaps best thought of as a delaying tactic rather than a curative treatment.

Best wishes,

Chris

User
Posted 12 Jan 2021 at 13:50
There are many kinds of focal therapy - including HIFU, focal laser ablation, cryotherapy, green light laser treatment. Some you have to travel abroad for. Most are too new to have any reliable data about long term implications. HIFU has been around for nearly 20 years but is still considered a niche treatment because there isn't enough evidence that it works. All are interesting for a man with a small early diagnosed tumour who really wants to minimise the risk of side effects and isn't going to be stressed out if the treatment fails and has to be repeated.

A T3 with 85% cancer on one side pretty much rules you out of almost all focal treatments.

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

User
Posted 12 Jan 2021 at 20:33

Originally Posted by: Online Community Member

I got cancelled because I HAD covid, past tenths, I had it at Christmas & was aloud out from 28th December.  Theres been a new policy come in today, if you've HAD covid you have to wait 6 weeks to have your operation.  I've been telling my wife that there'd never cancel my operation,  its cancer, it top trumps everything! So i keep getting told,  gutted, where my wife's concerned I've never been wrong b4!!!! 

I had my pre-op on 20th April 2020. The next evening I got a phone call from the surgeon to say...

"We were going to offer you Thursday (48 hours) but we've had to cancel because new info from London is that a few people have died because, they thought, the anaesthesia intubation pushed coronavirus deep into the lungs (and they'd been previously asymptomatic)."

So the outcome was an indefinite delay until they had procedures in place to mitigate. (Now everyone having surgery or hospital procedures gets tested.) Thankfully it was resolved within about 6 weeks, so I was glad I refused the offered bicalutamide.

The point I'm making is "they're being careful with your life" not "trying to piss you off". Unless you have a very aggressive tumour (which would be a higher Gleason score than you have) a few weeks won't make much difference.

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User
Posted 13 Jan 2021 at 00:33

Turns out the new directive from the government is 90 day, 3 months! My cancer team said carry on as planned ( self isolate from Thursday) & there pushing to get me in. 

I know HIFU has been around for 20 years so why so little evidence of clinical trials?? Has anyone here had it?? Any information greatly received as tomorrow me & my wife ( more her, shes a nurse & understands more) will be looking into it & I'm booking a consultation.  Thanks 

User
Posted 13 Jan 2021 at 01:36
There are a few men on here who have had HIFU but mostly as a salvage treatment when their op has failed. As I already said, the results aren't very good as a first treatment so very few hospitals offer it except as part of a trial or paid for privately. There were trials in 2010 - 2014ish but NICE decided not to approve it because so many men had a recurrence.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 13 Jan 2021 at 02:27

Originally Posted by: Online Community Member
HIFU doesn't have a great track record as a primary treatment, which is why the NHS don't offer it. If you do have it, presumably privately, you should be aware that it would probably need to be repeated at quite regular intervals, and the financial implications of that. It's perhaps best thought of as a delaying tactic rather than a curative treatment.

Best wishes,

Chris

Sorry Chris but your reply here needs clarification, updating and some correction.

As regards HIFU, more recent studies have shown the procedure to be safe and for suitable men and results have been comparable with other forms of treatment.  It has not received general approval for use within the NHS largely because long term assessment can only be established after many years, hence limited to trials in the NHS or as Private Treatment, although this is expected to change.  Some links that have been given previously on this Charity site were based on much earlier trials where earlier generation HIFU machines were used.  If you were considering EBRT today, you wouldn't be looking at 3D Conformal but IMRT or IGRT and you should therefore compare with the more advanced HIFU machines and techniques available today, see this link and video which shows the Sonablate favoured in the UK. https://www.fusfoundation.org/diseases-and-conditions/oncological/prostate-cancer

https://www.imperial.ac.uk/news/187086/prostate-cancer-ultrasound-treatment-effective-surgery/

https://prostatecanceruk.org/about-us/news-and-views/2018/7/hifu

HIFU can in need be repeated but to suggest it would probably be needed at regular intervals is not true. 

In the case of the OP it may well be beyond what can be achieved with HIFU.

 

Barry
User
Posted 14 Jan 2021 at 19:05

Going back to the question at the top: in my case at least a dry orgasm is accompanied by a sensation of peristaltic pumping.

(For the benefit of Chris J who knows the small print anatomy of the area such as Cowper's glands, it is most likely the response of bulbospongiosus muscle).

User
Posted 15 Jan 2021 at 07:29
Not to be confused with the other sensation of pumping that PC sufferers often have to endure for penile health.

I think matron has described the phenomenon of male orgasm post prostatectomy as being more female like. I agree as in my experience they range from minor events to mind blowing. Previously they were pretty consistent but I never enjoyed the prolonged build up that I now experience.

User
Posted 15 Jan 2021 at 20:02
To be honest, F, I can't remember what a female orgasm was like - I haven't had many in the last 11 years 🙄😂
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 16 Jan 2021 at 07:02
Yeah right! We know all about your cycling trips to France remember..
User
Posted 16 Jan 2021 at 07:50

Mick

A little tip for after surgery when the catheter is in. Buy yourself what they call a leg sleeve. Mine were called Ugo Fix, they make such a difference when you have the catheter bag on. It’s so much better than the provided straps and 100 times more comfortable. Be patient with all your recovery and the catheter will be out sooner than what it seems, once out you will be able to start your rehabilitation with gusto. Make sure you do your pelvic floor exercises now and continue to do them everyday, the more you do them the better chance of being dry sooner. You should be prescribed a pump by your specialist nurse, when you get it make sure you find the time each day 30 mins is recommended but not for the first few months give yourself time to heal, the nurses will advise you when the time is right. As I said be patient. I found Maggie’s centres were superb just talking to the other guys was a huge help. Not sure with covid if you can use Maggie’s virtually, but Pcuk is great for chatting with guys who have been through what you are. 
Im six months post RARP and reactions are scarce buy getting there. I am dry now at night and day buy have the occasional leak after a sneeze or cough.

Take care and all the best for your surgery, keep in touch.

Carl.

User
Posted 12 Mar 2021 at 03:14

I just subscribed here and saw your post, I don't know if your prostate is operated on but I'll try to give you my point of view if it helps. I had a robot assisted total prostatectomy 2 years ago and this issue worried me a lot before the surgery.

The dry orgasm is very surprising and very weird at the beginning, I obviously don't have the pleasant feeling of tension and of semen rising in my penis at the beginning, just before when we say "oh yes it comes", there it is It's more like a slight tingling and then my penis will start pumping rhythmically like before. The reflex is very present and the spasms are as numerous and powerful as before, the fact that there is no liquid passing through the urethra takes away a lot of sensation.

The fact of not seeing the semen squirt from my penis takes away from the quality of the experience but it is the new reality for us men who no longer have a prostate. The only positive aspect is that there is no big mess to clean up after the fun time.

 
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