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Dry cum

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
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.

 
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