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44 and a decision to make in 3 months

User
Posted 01 Jul 2023 at 17:05

Good Afternoon 

I have been on here since I was diagnosed on Thursday 14th June 2023 with low grade 2 area one side tumour and only just found this younger men page!

 

I am Gleason 6 T1c N0 PSA 5.3 

 

But my dad had aggressive prostate cancer and died at 67 after 17 months, 13 years ago  

 

I’ve also had melanoma 15 months ago. 

 

• I only got picked up with PC on MRI due to a urine infection (not related ) then CT, DRE, biopsy and here I am 6 weeks later. 

 

Due to dad’s history the consultant / mdt have given me until September to make a decision with my wife & 16yr old daughter plus lots of reading on these options: 

 

RP

 

Brachytherapy 

 

Radiotherapy 

 

HIFU- in a trial

 

AS 

 

Due to dad the consultant/mdt were advising me against AS. 

 

It has come earlier than I expected in my life and would really appreciate any advice as I’m 44 with what seems lots of options with lots of side effects!


I would really appreciate any feedback from you around my age with choices, treatments, side effects etc. as there isn’t much information on this as most seem to be older. 

Many Thanks 

 

Carl 😊

 

User
Posted 01 Jul 2023 at 22:00

Hi Carl,

I am in no way qualified to tell you what route to choose, but if I was your age and had the choice it would definitely be RP. My reasons would be

1. Your young age and family history.
2. If something is left behind you’ve got a fallback
3.  ED and incontinence may be a problem side effect for you with RP, but on HT/RT route you’ve got lots of side effects to deal with…Hot flushes, fatigue, brain fog, muscle loss and joint ache, Peyronie’s disease(might also happen on RP), emotional issues, total lack of libido and ED during and after treatment(which might last 3 years). I’m not saying you’ll get all or any of these, just speaking from personal experience.

My advice is go along to a support group if you have one, and speak to others who have had these treatments. I know in my Maggies Group all those who have had RP say they made the right decision even though they still have issues, whilst those going down the HT/RT route wish they had been given the choice of RP. Very few if any make the choice of HT/RT.

All the best with your decision.

Derek

Edited by member 01 Jul 2023 at 22:01  | Reason: Not specified

User
Posted 05 Jul 2023 at 17:39

Hi Carl, I'm really sorry that you find yourself in this situation. I'm also sorry to hear about your dad's passing. I was 47 when I was diagnosed last year — a bit older than you but still relatively young in prostate cancer terms. My dad also died from prostate cancer, but he was 88, which was around the same age his own father died, so probably about his natural lifespan. 

Of course, I can't advise you about what you should do, only tell you what I did and how it turned out, and what I might do in your situation. My cancer was graded Gleason 7 (3+4) with 20% pattern 4. There was also peri-neural invasion, meaning it had got into the nerve capsules (the internal nerves inside the prostate, not the external ones that control erectile function). The cancer was stage T2 and confined within the prostate. I spoke to specialists about surgery (RP), focal therapy (HIFU), and hormone + radiotherapy. One urologist also recommended active surveillance. So basically, everything was on the table. In the end I chose surgery. I had initially hoped that I could have HIFU but the specialist I spoke to at UCLH was quite negative about it and said that he thought that if I had it the cancer would return. He also said that HIFU, like radiotherapy, fuses the outer membrane to the prostate, meaning that subsequent surgery would probably not be nerve-sparing. 

The surgery itself went well and the nerves were spared on both sides. I had no urinary incontinence afterwards and I recovered quickly. I'm now about 9 and a half months on, and in most respects life is back to normal. I go running, walking, travelling, etc. No change at all to all of those things. The main side effect is the ED. Things have been improving slowly but I am still nowhere near back to normal function. It also turns out that I can't tolerate PDE5 inhibitors (Viagra, Cialis, etc.), which play such a huge role in recovery. Taking them has seriously damaged my hearing. It's a very rare side effect, but unfortunately I have it, and that considerably lowers my odds of getting back to decent function. So, it's one main side effect from the surgery, but a big one. Everybody will feel differently about ED, but speaking for myself it bothers me a lot. I'm desperate for it to improve because I just don't know how I would live with it in the longterm. Sometimes, I wish I had sought a second opinion on HIFU.

All treatments will come with side effects and risks, and each person will have different priorities. If it were me and I had a biopsy showing Gleason 6 (and knowing how much the ED bothers me) I think I would want to speak to a HIFU specialist and get a clear picture from them (and I wouldn't let the distance put me off if I had to travel to do so — if something is the right treatment then I think it's worth it). I'd also probably want a second opinion about active surveillance — you might get another 10 years before you have to do anything. However, given your family history, and your own previous history of cancer, I can see why you might not want to go down those routes. AS would leave you with the cancer (which might or might not progress quickly) and HIFU would leave you with a prostate that could develop new cancers. Surgery has the advantage of removing the prostate entirely. Exactly how much erectile function you recover afterwards seems to be a bit of a lottery (although surgical skill plays a big role, I am told) but if they can spare the nerves then you have a decent chance. Of course, the main thing is to listen to the specialists, the MDT, etc.. I'm sorry you find yourself here — it's a really difficult decision to make.

Edited by member 05 Jul 2023 at 17:43  | Reason: Not specified

User
Posted 05 Jul 2023 at 19:34

Originally Posted by: Online Community Member
It also turns out that I can't tolerate PDE5 inhibitors (Viagra, Cialis, etc.), which play such a huge role in recovery. Taking them has seriously damaged my hearing.

I'm aware of that potential side effect, but I haven't come across it before. Could I ask exactly what the symptoms were?
Another side effect is acid reflux - unlikely in someone who never suffers from it anyway, but can make it worse if you do.

That makes me think it might be worth patients trying a PDE5 inhibitor before deciding treatment, if the treatment is going to significantly benefit from them. Some surgeons do now start patients on PDE5 inhibitors just before the surgery, but that's not before treatment decision.

Edited by member 05 Jul 2023 at 19:34  | Reason: Not specified

User
Posted 05 Jul 2023 at 19:38

If your cancer is well contained within the gland with good margin RP is not a bad choice. I chose RP 12 years ago and I think I made the correct choice even though I am 99.9% continent (leak when sexually excited) and suffer from ED which is more due to my age rather than the surgery. With robotic RP you have a good chance of eliminating cancer from your body. Of course there is a risk of incontinence and ED. I suffer from both following my surgery 12 years ago but have managed to re-establish ours life. Have a look at my post and good luck:

: https://community.prostatecanceruk.org/posts/t28948-Re-establishing-Sex-Life

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate

 

 

User
Posted 05 Jul 2023 at 19:50

Hello Carl - I'm very sorry about your diagnosis at such a young age.  I can only tell you about my own experience, now aged 75.  In March 2022 I had a PSA test (on my wife's insistence because my father developed PCa in his late seventies and was told he would die of something else first (which he did).

The reading was 10.9 which is high of course (though at my age and with a very large prostate not hugely significant as I later discovered), and an MRI scan followed (Likert 3) and then a biopsy, 5 out of 25 cores with up to 20% involvement "best regarded" as Gleason 3 + 4, T2 N0 M).  I was then offered treatments of hormone therapy (6 months) and RT (20 sessions) on the NHS.

I then investigated HIFU which is generally only available privately and was told it would be possible in my case.  I also sought a second opinion from a consultant at The Christie in Manchester and his reviewing pathologist said there was minimal Gleason 4 involvement and "best regarded" as 3 + 3.  Hence, I'm under active surveillance and as long my PSA levels are around the 11 mark (last reading 9.1) then all good, also a second MRI scan in May 10 months after the first showed "no change whatsoever" in the appearance of the prostate.

Having told you all that about myself (sorry!) I realise you are much younger than me (age is apparently relevant with this slow-growing cancer as most men of advanced years die with prostate cancer than from it) but I appreciate you may well want to be rid of it sooner rather than later and not live knowing it's still there, as I do, but at the end of the day it's your decision to make and have to tell you that I was more worried about the effects of the treatments than the cancer itself!

Regarding HIFU, also cryotherapy which is similar but different, it's still regarded as being in its early days but the treatment is much easier being generally only a day case, but I understand there's a high chance it would need to be repeated. Cheers, Julian

User
Posted 05 Jul 2023 at 20:31

Thanks Carl - my understanding is that the vast majority of wives/partners want rid of it with RP whilst many men with low-risk cancer, like you and me, are more worried about the long-term side effects!  Cheers, Julian

User
Posted 06 Jul 2023 at 08:43

I had to make a similar decision to you around 6 months ago at the age of 42 although mine was a bit more aggressive 3+4.

I listened to what the urologist, surgeon and oncologist said and followed their advice. I did a lot of research on the surgeon and he said that (in his experience) for younger men (ie 40-50) the side effects were much less likely than the statistics (assuming contained, nerve sparing, not enlarged etc). This is only what he said and I am sure some here will disagree.

My oncologists concern was not immediately but 20-30 years down the line if I didn't get it removed. Again just her warning to me. My decision would have been harder at 70.

Personally I was continent from the minute the catheter was removed and ED has not been much of an issue other than some initial shock it is now 95% back.

Hopefully the cancer is removed and it was definitely the right decision for me. Had something gone wrong then I am sure I would be advocating another route. Most of us have an unconscious bias because of our experiences hopefully the consultants advising you don't but at the end of the day it is your decision to weigh up the risk vs reward.

Best of luck with whichever treatment you pick.

 

 

User
Posted 06 Jul 2023 at 17:28

Yes age was a major factor. I was worried about recurrence.

Also I am an optimist. For me the ultimate outcome was to have the prostate on a petri dish showing after the biopsy that the cancer was still in the prostate and hadn't escaped and no side affects. As such my ideal outcome could only be achieved through an RP.

User
Posted 06 Jul 2023 at 19:42

Originally Posted by: Online Community Member

Hi Carl, I'm really sorry that you find yourself in this situation. I'm also sorry to hear about your dad's passing. I was 47 when I was diagnosed last year — a bit older than you but still relatively young in prostate cancer terms. My dad also died from prostate cancer, but he was 88, which was around the same age his own father died, so probably about his natural lifespan. 

Of course, I can't advise you about what you should do, only tell you what I did and how it turned out, and what I might do in your situation. My cancer was graded Gleason 7 (3+4) with 20% pattern 4. There was also peri-neural invasion, meaning it had got into the nerve capsules (the internal nerves inside the prostate, not the external ones that control erectile function). The cancer was stage T2 and confined within the prostate. I spoke to specialists about surgery (RP), focal therapy (HIFU), and hormone + radiotherapy. One urologist also recommended active surveillance. So basically, everything was on the table. In the end I chose surgery. I had initially hoped that I could have HIFU but the specialist I spoke to at UCLH was quite negative about it and said that he thought that if I had it the cancer would return. He also said that HIFU, like radiotherapy, fuses the outer membrane to the prostate, meaning that subsequent surgery would probably not be nerve-sparing. 

The surgery itself went well and the nerves were spared on both sides. I had no urinary incontinence afterwards and I recovered quickly. I'm now about 9 and a half months on, and in most respects life is back to normal. I go running, walking, travelling, etc. No change at all to all of those things. The main side effect is the ED. Things have been improving slowly but I am still nowhere near back to normal function. It also turns out that I can't tolerate PDE5 inhibitors (Viagra, Cialis, etc.), which play such a huge role in recovery. Taking them has seriously damaged my hearing. It's a very rare side effect, but unfortunately I have it, and that considerably lowers my odds of getting back to decent function. So, it's one main side effect from the surgery, but a big one. Everybody will feel differently about ED, but speaking for myself it bothers me a lot. I'm desperate for it to improve because I just don't know how I would live with it in the longterm. Sometimes, I wish I had sought a second opinion on HIFU.

All treatments will come with side effects and risks, and each person will have different priorities. If it were me and I had a biopsy showing Gleason 6 (and knowing how much the ED bothers me) I think I would want to speak to a HIFU specialist and get a clear picture from them (and I wouldn't let the distance put me off if I had to travel to do so — if something is the right treatment then I think it's worth it). I'd also probably want a second opinion about active surveillance — you might get another 10 years before you have to do anything. However, given your family history, and your own previous history of cancer, I can see why you might not want to go down those routes. AS would leave you with the cancer (which might or might not progress quickly) and HIFU would leave you with a prostate that could develop new cancers. Surgery has the advantage of removing the prostate entirely. Exactly how much erectile function you recover afterwards seems to be a bit of a lottery (although surgical skill plays a big role, I am told) but if they can spare the nerves then you have a decent chance. Of course, the main thing is to listen to the specialists, the MDT, etc.. I'm sorry you find yourself here — it's a really difficult decision to make.

 

This is, simply, a brilliant reply from Londoner. It pretty much sums up my own experience too. At heart, we have probably made the correct decision but thanks to ED? It leaves us with huge doubts over whether its the right one. We are under 50, this s*it happens only to those of us of greater years. Truth is ,it doesnt. I remember the late great Christopher Hitchens, maybe Letters to A Young Conntrarian ( arguably the best book I have ever read!) saying that when we look to the stars to ask, Why me? They invariably speak back to us asking...why not?.

It is what it is.

Im 75-80 % on ED. Im probably lucky. But in truth im angry. I think and have feared for over a year and a half now. That my most intimate part has been breached. Probably beyond any kind of repair.

I have hope and sometimes cling on to the words of people like CJ on here.  His resoluteness and determination, when it comes to ED gives me and im sure, others, hope. More than even he could possibly calculate. But, its always tempered with the knowledge that im considered and rightly so....Lucky.

None of us want this path. 

 

Jamie.

 

Edited by member 06 Jul 2023 at 19:54  | Reason: Not specified

User
Posted 06 Jul 2023 at 21:12

It’s worth bearing in mind that if you choose the HT/RT route, the chances are you will very quickly have zero libido, which you may have for up to 3 years, along with some, if not complete, ED during that period. When you finish the HT you ‘hopefully’ should get both back, but how long that takes seems to be very variable.
It’s an odd feeling when you’d rather have a nice cup of coffee than sex(like many women going through the menopause)..hopefully your partner understands and you can still have fun, but it’s NOT the same. I must admit though it must be VERY frustrating HAVING a libido but also having ED.
As I found out from a specialist consultant, Peyronie’s disease(which I now have) can occur with either treatment so it’s really important to do Rehab during the period of ED.

There are many other side effects you MAY get going down the HT/RT route. Hot flushes, brain fog, joint aches and stiffness, fatigue, and as I’ve found out you need to keep active to keep these at bay.

it’s not an easy decision to make either way, perhaps you need to consider which treatment is your best option for getting rid of the cancer, and deal with the side effects when and if you get them. At least you will hopefully be cancer free.

Derek

User
Posted 08 Oct 2023 at 07:57

Good new Carl, I’m very pleased for you.

Derek

Show Most Thanked Posts
User
Posted 01 Jul 2023 at 22:00

Hi Carl,

I am in no way qualified to tell you what route to choose, but if I was your age and had the choice it would definitely be RP. My reasons would be

1. Your young age and family history.
2. If something is left behind you’ve got a fallback
3.  ED and incontinence may be a problem side effect for you with RP, but on HT/RT route you’ve got lots of side effects to deal with…Hot flushes, fatigue, brain fog, muscle loss and joint ache, Peyronie’s disease(might also happen on RP), emotional issues, total lack of libido and ED during and after treatment(which might last 3 years). I’m not saying you’ll get all or any of these, just speaking from personal experience.

My advice is go along to a support group if you have one, and speak to others who have had these treatments. I know in my Maggies Group all those who have had RP say they made the right decision even though they still have issues, whilst those going down the HT/RT route wish they had been given the choice of RP. Very few if any make the choice of HT/RT.

All the best with your decision.

Derek

Edited by member 01 Jul 2023 at 22:01  | Reason: Not specified

User
Posted 01 Jul 2023 at 22:11

Hi Derek

many thanks for your advice and insight from others in your group too. 
It is good to hear your experience especially on other side effects which I had not heard of. 

User
Posted 05 Jul 2023 at 17:39

Hi Carl, I'm really sorry that you find yourself in this situation. I'm also sorry to hear about your dad's passing. I was 47 when I was diagnosed last year — a bit older than you but still relatively young in prostate cancer terms. My dad also died from prostate cancer, but he was 88, which was around the same age his own father died, so probably about his natural lifespan. 

Of course, I can't advise you about what you should do, only tell you what I did and how it turned out, and what I might do in your situation. My cancer was graded Gleason 7 (3+4) with 20% pattern 4. There was also peri-neural invasion, meaning it had got into the nerve capsules (the internal nerves inside the prostate, not the external ones that control erectile function). The cancer was stage T2 and confined within the prostate. I spoke to specialists about surgery (RP), focal therapy (HIFU), and hormone + radiotherapy. One urologist also recommended active surveillance. So basically, everything was on the table. In the end I chose surgery. I had initially hoped that I could have HIFU but the specialist I spoke to at UCLH was quite negative about it and said that he thought that if I had it the cancer would return. He also said that HIFU, like radiotherapy, fuses the outer membrane to the prostate, meaning that subsequent surgery would probably not be nerve-sparing. 

The surgery itself went well and the nerves were spared on both sides. I had no urinary incontinence afterwards and I recovered quickly. I'm now about 9 and a half months on, and in most respects life is back to normal. I go running, walking, travelling, etc. No change at all to all of those things. The main side effect is the ED. Things have been improving slowly but I am still nowhere near back to normal function. It also turns out that I can't tolerate PDE5 inhibitors (Viagra, Cialis, etc.), which play such a huge role in recovery. Taking them has seriously damaged my hearing. It's a very rare side effect, but unfortunately I have it, and that considerably lowers my odds of getting back to decent function. So, it's one main side effect from the surgery, but a big one. Everybody will feel differently about ED, but speaking for myself it bothers me a lot. I'm desperate for it to improve because I just don't know how I would live with it in the longterm. Sometimes, I wish I had sought a second opinion on HIFU.

All treatments will come with side effects and risks, and each person will have different priorities. If it were me and I had a biopsy showing Gleason 6 (and knowing how much the ED bothers me) I think I would want to speak to a HIFU specialist and get a clear picture from them (and I wouldn't let the distance put me off if I had to travel to do so — if something is the right treatment then I think it's worth it). I'd also probably want a second opinion about active surveillance — you might get another 10 years before you have to do anything. However, given your family history, and your own previous history of cancer, I can see why you might not want to go down those routes. AS would leave you with the cancer (which might or might not progress quickly) and HIFU would leave you with a prostate that could develop new cancers. Surgery has the advantage of removing the prostate entirely. Exactly how much erectile function you recover afterwards seems to be a bit of a lottery (although surgical skill plays a big role, I am told) but if they can spare the nerves then you have a decent chance. Of course, the main thing is to listen to the specialists, the MDT, etc.. I'm sorry you find yourself here — it's a really difficult decision to make.

Edited by member 05 Jul 2023 at 17:43  | Reason: Not specified

User
Posted 05 Jul 2023 at 19:15

Hi There

Thank you for the honest and detailed answer. 
You have raised a few points which I had not thought about and also did not know. 
It is the way it is all left to you to decide and then the lottery of what if…… 

I guess like you said, listen to the specialists and then go with the gut feeling of what I feel is right at this point of time when I have to make a decision. 

Many thanks again and hope things improve for you 

Carl

User
Posted 05 Jul 2023 at 19:34

Originally Posted by: Online Community Member
It also turns out that I can't tolerate PDE5 inhibitors (Viagra, Cialis, etc.), which play such a huge role in recovery. Taking them has seriously damaged my hearing.

I'm aware of that potential side effect, but I haven't come across it before. Could I ask exactly what the symptoms were?
Another side effect is acid reflux - unlikely in someone who never suffers from it anyway, but can make it worse if you do.

That makes me think it might be worth patients trying a PDE5 inhibitor before deciding treatment, if the treatment is going to significantly benefit from them. Some surgeons do now start patients on PDE5 inhibitors just before the surgery, but that's not before treatment decision.

Edited by member 05 Jul 2023 at 19:34  | Reason: Not specified

User
Posted 05 Jul 2023 at 19:38

If your cancer is well contained within the gland with good margin RP is not a bad choice. I chose RP 12 years ago and I think I made the correct choice even though I am 99.9% continent (leak when sexually excited) and suffer from ED which is more due to my age rather than the surgery. With robotic RP you have a good chance of eliminating cancer from your body. Of course there is a risk of incontinence and ED. I suffer from both following my surgery 12 years ago but have managed to re-establish ours life. Have a look at my post and good luck:

: https://community.prostatecanceruk.org/posts/t28948-Re-establishing-Sex-Life

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate

 

 

User
Posted 05 Jul 2023 at 19:50

Hello Carl - I'm very sorry about your diagnosis at such a young age.  I can only tell you about my own experience, now aged 75.  In March 2022 I had a PSA test (on my wife's insistence because my father developed PCa in his late seventies and was told he would die of something else first (which he did).

The reading was 10.9 which is high of course (though at my age and with a very large prostate not hugely significant as I later discovered), and an MRI scan followed (Likert 3) and then a biopsy, 5 out of 25 cores with up to 20% involvement "best regarded" as Gleason 3 + 4, T2 N0 M).  I was then offered treatments of hormone therapy (6 months) and RT (20 sessions) on the NHS.

I then investigated HIFU which is generally only available privately and was told it would be possible in my case.  I also sought a second opinion from a consultant at The Christie in Manchester and his reviewing pathologist said there was minimal Gleason 4 involvement and "best regarded" as 3 + 3.  Hence, I'm under active surveillance and as long my PSA levels are around the 11 mark (last reading 9.1) then all good, also a second MRI scan in May 10 months after the first showed "no change whatsoever" in the appearance of the prostate.

Having told you all that about myself (sorry!) I realise you are much younger than me (age is apparently relevant with this slow-growing cancer as most men of advanced years die with prostate cancer than from it) but I appreciate you may well want to be rid of it sooner rather than later and not live knowing it's still there, as I do, but at the end of the day it's your decision to make and have to tell you that I was more worried about the effects of the treatments than the cancer itself!

Regarding HIFU, also cryotherapy which is similar but different, it's still regarded as being in its early days but the treatment is much easier being generally only a day case, but I understand there's a high chance it would need to be repeated. Cheers, Julian

User
Posted 05 Jul 2023 at 20:21

Hi Pratap

Thank you for your experience on RP and I’m pleased you are 99% good. 
I am coming to the conclusion that it’s a decision that is made based on how you feel most mentally confident with 

User
Posted 05 Jul 2023 at 20:25

Hi Julian

Thank you for your message and insight. 
I am at the moment more concerned about the side effects than having the PC as I was told it was low grade but with a family history. And it seems being younger makes a difference too, which I had not thought of before. 
My wife and daughter on the other hand, think more of the PC and a bit less of the side effects. 
I do appreciate your advice on your own story 

Thank You 

User
Posted 05 Jul 2023 at 20:31

Thanks Carl - my understanding is that the vast majority of wives/partners want rid of it with RP whilst many men with low-risk cancer, like you and me, are more worried about the long-term side effects!  Cheers, Julian

User
Posted 05 Jul 2023 at 20:41

In our house, you are correct. 
It’s nice though that they must love us. 
Carl

User
Posted 05 Jul 2023 at 20:42

Hi Andy, the damage to hearing from the PDE5 inhibitors manifested for me as sudden reduced hearing on one side, along with tinnitus. Foolishly, I tried several times, so I compounded the effects. Hearing tests show that I've lost quite a lot of hearing in the left ear at the higher frequencies. The hearing loss itself isn't much of an issue for me but the tinnitus is annoying and is now at a level where I have a harder time adjusting to it. The ENT specialist I spoke to said it is a recognised side effect but they haven't yet established why it happens. It only affects a very small number of people. Considering how many people take these drugs globally, the risk must be extremely low. The ENT did say I could maybe try again at reduced dose, but it's risky.

I had the same thought as you — it might be a good idea to try the drugs out before treatment. 

User
Posted 06 Jul 2023 at 08:43

I had to make a similar decision to you around 6 months ago at the age of 42 although mine was a bit more aggressive 3+4.

I listened to what the urologist, surgeon and oncologist said and followed their advice. I did a lot of research on the surgeon and he said that (in his experience) for younger men (ie 40-50) the side effects were much less likely than the statistics (assuming contained, nerve sparing, not enlarged etc). This is only what he said and I am sure some here will disagree.

My oncologists concern was not immediately but 20-30 years down the line if I didn't get it removed. Again just her warning to me. My decision would have been harder at 70.

Personally I was continent from the minute the catheter was removed and ED has not been much of an issue other than some initial shock it is now 95% back.

Hopefully the cancer is removed and it was definitely the right decision for me. Had something gone wrong then I am sure I would be advocating another route. Most of us have an unconscious bias because of our experiences hopefully the consultants advising you don't but at the end of the day it is your decision to weigh up the risk vs reward.

Best of luck with whichever treatment you pick.

 

 

User
Posted 06 Jul 2023 at 12:44

Many thanks for your insight. 
I thought I was young but at 42 that is even more of a decision!

It is really pleasing to hear that you have been side effect clear mostly. 
I guess the prevention of having it out was the deciding factor in your decision due to age?

I will keep weighing up my options and listening to the experts and thank you for your advice 

User
Posted 06 Jul 2023 at 17:28

Yes age was a major factor. I was worried about recurrence.

Also I am an optimist. For me the ultimate outcome was to have the prostate on a petri dish showing after the biopsy that the cancer was still in the prostate and hadn't escaped and no side affects. As such my ideal outcome could only be achieved through an RP.

User
Posted 06 Jul 2023 at 18:03

Hi Carl......

I was 60 when I had my RP, so can't relate to your exact situation, but for me, getting the cancer out of my body was paramount. Of course, the first few days post surgery are not fun, with catheter, bowel movements, a bit of shock to the system, etc.....

For me, the side affects have not been too much of an issue. Incontinence is a small issue, ED is a bit more problematic, but with rings and pump, manageable.

I wish you good luck with everything, and know that we are all rooting for you!!

Dan

Edited by member 06 Jul 2023 at 18:04  | Reason: spelling

User
Posted 06 Jul 2023 at 19:05

I was in exactly the same place re removal - get it out! And I was optimistic until positive margins came up. The surgery is (very) difficult even when robotically assisted and a reasonable proportion of guys are back into round two for salvage therapy. This shouldn't be overlooked. Unfortunately BAUS reports the number of ops done, but not the number of positive margins left behind (I think that would be a really good addition).

The surgery is MAJOR. The external afters make it look like nothing, but your internal anatomy is going to be different forever more. You may or may not incur long-term side effects but even if you’re not destined for that, you do need to be careful during recovery. It is tempting to push on because you feel ok - but a lot of guys have incontinence issues thru’ overdoing it. You need to listen to your body for up to two years.

 

Edited by member 06 Jul 2023 at 19:06  | Reason: Not specified

User
Posted 06 Jul 2023 at 19:23

Yes I agree that age and getting it out is something that is more in my mind of thinking especially the more I read on this. 
There seems to be a very high percentage of guys who have RP and then have a higher marker result upon their biopsy results. 
This is steering me further from As. 
Secondary Cancer isn’t something that I want to think about in that area but is something that is real and must be considered when making the decision too. 

User
Posted 06 Jul 2023 at 19:42

Originally Posted by: Online Community Member

Hi Carl, I'm really sorry that you find yourself in this situation. I'm also sorry to hear about your dad's passing. I was 47 when I was diagnosed last year — a bit older than you but still relatively young in prostate cancer terms. My dad also died from prostate cancer, but he was 88, which was around the same age his own father died, so probably about his natural lifespan. 

Of course, I can't advise you about what you should do, only tell you what I did and how it turned out, and what I might do in your situation. My cancer was graded Gleason 7 (3+4) with 20% pattern 4. There was also peri-neural invasion, meaning it had got into the nerve capsules (the internal nerves inside the prostate, not the external ones that control erectile function). The cancer was stage T2 and confined within the prostate. I spoke to specialists about surgery (RP), focal therapy (HIFU), and hormone + radiotherapy. One urologist also recommended active surveillance. So basically, everything was on the table. In the end I chose surgery. I had initially hoped that I could have HIFU but the specialist I spoke to at UCLH was quite negative about it and said that he thought that if I had it the cancer would return. He also said that HIFU, like radiotherapy, fuses the outer membrane to the prostate, meaning that subsequent surgery would probably not be nerve-sparing. 

The surgery itself went well and the nerves were spared on both sides. I had no urinary incontinence afterwards and I recovered quickly. I'm now about 9 and a half months on, and in most respects life is back to normal. I go running, walking, travelling, etc. No change at all to all of those things. The main side effect is the ED. Things have been improving slowly but I am still nowhere near back to normal function. It also turns out that I can't tolerate PDE5 inhibitors (Viagra, Cialis, etc.), which play such a huge role in recovery. Taking them has seriously damaged my hearing. It's a very rare side effect, but unfortunately I have it, and that considerably lowers my odds of getting back to decent function. So, it's one main side effect from the surgery, but a big one. Everybody will feel differently about ED, but speaking for myself it bothers me a lot. I'm desperate for it to improve because I just don't know how I would live with it in the longterm. Sometimes, I wish I had sought a second opinion on HIFU.

All treatments will come with side effects and risks, and each person will have different priorities. If it were me and I had a biopsy showing Gleason 6 (and knowing how much the ED bothers me) I think I would want to speak to a HIFU specialist and get a clear picture from them (and I wouldn't let the distance put me off if I had to travel to do so — if something is the right treatment then I think it's worth it). I'd also probably want a second opinion about active surveillance — you might get another 10 years before you have to do anything. However, given your family history, and your own previous history of cancer, I can see why you might not want to go down those routes. AS would leave you with the cancer (which might or might not progress quickly) and HIFU would leave you with a prostate that could develop new cancers. Surgery has the advantage of removing the prostate entirely. Exactly how much erectile function you recover afterwards seems to be a bit of a lottery (although surgical skill plays a big role, I am told) but if they can spare the nerves then you have a decent chance. Of course, the main thing is to listen to the specialists, the MDT, etc.. I'm sorry you find yourself here — it's a really difficult decision to make.

 

This is, simply, a brilliant reply from Londoner. It pretty much sums up my own experience too. At heart, we have probably made the correct decision but thanks to ED? It leaves us with huge doubts over whether its the right one. We are under 50, this s*it happens only to those of us of greater years. Truth is ,it doesnt. I remember the late great Christopher Hitchens, maybe Letters to A Young Conntrarian ( arguably the best book I have ever read!) saying that when we look to the stars to ask, Why me? They invariably speak back to us asking...why not?.

It is what it is.

Im 75-80 % on ED. Im probably lucky. But in truth im angry. I think and have feared for over a year and a half now. That my most intimate part has been breached. Probably beyond any kind of repair.

I have hope and sometimes cling on to the words of people like CJ on here.  His resoluteness and determination, when it comes to ED gives me and im sure, others, hope. More than even he could possibly calculate. But, its always tempered with the knowledge that im considered and rightly so....Lucky.

None of us want this path. 

 

Jamie.

 

Edited by member 06 Jul 2023 at 19:54  | Reason: Not specified

User
Posted 06 Jul 2023 at 20:10

Hi Jamie

Thank you for your reply. 
Yes, if it wasn’t for the side effects, the decision we all have would be a very easy one. 
I’m sorry that you have mostly ED and I do not know how I would feel if this was me or if it was me with incontinence issues. 
I keep saying it, but it is a decision that is circulating in my mind at times and gives a feeling of being in a holding pen until October when I have a follow up. 
Don’t know if this appointment will shed any light but I’m holding onto that. 

User
Posted 06 Jul 2023 at 21:12

It’s worth bearing in mind that if you choose the HT/RT route, the chances are you will very quickly have zero libido, which you may have for up to 3 years, along with some, if not complete, ED during that period. When you finish the HT you ‘hopefully’ should get both back, but how long that takes seems to be very variable.
It’s an odd feeling when you’d rather have a nice cup of coffee than sex(like many women going through the menopause)..hopefully your partner understands and you can still have fun, but it’s NOT the same. I must admit though it must be VERY frustrating HAVING a libido but also having ED.
As I found out from a specialist consultant, Peyronie’s disease(which I now have) can occur with either treatment so it’s really important to do Rehab during the period of ED.

There are many other side effects you MAY get going down the HT/RT route. Hot flushes, brain fog, joint aches and stiffness, fatigue, and as I’ve found out you need to keep active to keep these at bay.

it’s not an easy decision to make either way, perhaps you need to consider which treatment is your best option for getting rid of the cancer, and deal with the side effects when and if you get them. At least you will hopefully be cancer free.

Derek

User
Posted 06 Jul 2023 at 21:35

Doesn’t sound a great option all round for HT. Especially as it comes with so many different effects and I guess variations.
The consultant didn’t mention HT thank goodness. 
You are correct about choosing to eradicate with the least side effects. A dream team of a choice 

User
Posted 19 Sep 2023 at 15:46

Update today:

last PSA in May was 5.07 today it is 1.27, I haven’t had any treatment or anything. 
I am guessing this is a great sign that nothing is growing. 
I must say that I did not think it would go down that much though. 
Is this normal? 
I also have my Genetic consultation tomorrow as the consultant believes I may have the Braca gene. This will be an interesting discussion. 

User
Posted 08 Oct 2023 at 07:07

Hello 👋🏻 

An update from my first 3 month consultant review since being diagnosed. 

The consultant was happy with my PSA going down and said it was raised due to infection and now we have a normal baseline level to go from plus it gives me time to look into treatment options further. 

These treatments may be a way off, but will be required at some stage, but due to my age 44, and family history it’s a good time to explore and evaluate them. 

He is sending referrals off to the oncologists in Addenbrookes for Brachytherapy and surgery and also to King Edward VII hospital in London for focal treatments, so I can have a consultation with them all and discuss my position, thoughts and their opinions. 

I will have a PSA test in 3 months and see him again and hopefully by then also have my Genetics results back to see if they make a difference on a decision. 

But all in all it’s a positive situation at the moment as I have time to wait and explore all options with the consultants. 😊

User
Posted 08 Oct 2023 at 07:57

Good new Carl, I’m very pleased for you.

Derek

 
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