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I can't choose - Surgery or RT

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User
Posted 10 Oct 2024 at 00:15

What a whirlwind - decided to have a health screen in May 24, showed a very high PSA; then an MRI; then a biopsy; then a diagnosis in Aug 24

At the time I understood the diagnosis and heard the options proposed for treatment, but I just couldn't process it all. I heard the words, but didn't know what to think/say/do.

I expected to worry about life & death, but no..... all I heard was urinary problems, bowel problems, dry ejaculation, erectile issues, tiredness, catheter, weight gain. I didn't know my sex life would take such a hit.

I've hidden from the decision for a month - needed to adjust - now after seeing the surgeon and the oncologist, I know I need to decide between surgery and HT/RT asap.

I honestly do not know what to do.

My gut doesn't want surgery or a catheter or learning to pee again - but it seems quicker.

So....I am here to hear.....is there another option ? Is it all sh*t so doesn't matter which I choose ?

I don't usually ask for help - but I need your help

Graeme

 

 

User
Posted 11 Oct 2024 at 10:02
Hi Grazbo, very similar diagnosis to my Husband last year…he made the decision for surgery (aged 61) the reasons:

He wanted it ‘out of him’

Removing ‘the mothership’ theory! Possibility of less chance of re-occurance

Chance of RT if there was a recurrence in the future

Reasonably fit and healthy for surgery at his stage in life

The good thing was post RARP histology did show cancer was contained within prostate so that was reassuring confirmation.

We knew what the likely side effects would be; 9 months post RARP now, he is still partly incontinent, so it’s very slow but we can see an improvement but he is getting on with it and he is managing really well and we are getting on with life albeit he finds it frustrating at times!

Steve was 80% nerve sparing so we do expect the ED issues to resolve ultimately, this can take around two years for nerves to recover; we are just beginning the range of treatments/assistance to hopefully re-establish our sex life and believe we will get there…again sometimes frustrating and a longing for pre RARP days!

In summary, he finds the worst thing is the incontinence…but it is manageable…and despite all of this in retrospect he says he would still make the same decision. He feels he has given it the best chance of being cancer free!

Good luck with your decision

Debbie

User
Posted 11 Oct 2024 at 16:49

As others have said, it's a personal decision and everyone is different. 

I too found it initially overwhelming, life changing decisions in a wholly unfamiliar world. I was 61, fit and healthy, and diagnosed as Gleason 4+4 and T2c. I had several discussions with both surgeon and oncologist and what probably swung it was the oncologist saying he would, on balance, recommend surgery over HT/RT due to age, health, and diagnosis. The possibility of removing it 'cleanly' also appealed psychologically. 

Post op checks have been undetectable but very aware that this could change. 

I didn't like the catheter but it was an inconvenience rather than anything especially uncomfortable. Subsequent continence has been pretty decent with 1 pad per day, nights fine, and pad free at around 6 months. Exercise permitted at 3 months which was a relief and wasn't at all uncomfortable.  

ED recovery takes time and patience. Have been on Tadalafil 5mg, use a VED pump for rehabilitation, and Viridal injections which work. So some commitment needed but was able to restore a sex life within a few months. I found dry orgasms surprisingly easy to get used to. 

Good luck with whatever you choose. It isn't easy. At all. And everyone is different. But there's a lot of support here whichever path you follow. 

User
Posted 10 Oct 2024 at 00:15

What a whirlwind - decided to have a health screen in May 24, showed a very high PSA; then an MRI; then a biopsy; then a diagnosis in Aug 24

At the time I understood the diagnosis and heard the options proposed for treatment, but I just couldn't process it all. I heard the words, but didn't know what to think/say/do.

I expected to worry about life & death, but no..... all I heard was urinary problems, bowel problems, dry ejaculation, erectile issues, tiredness, catheter, weight gain. I didn't know my sex life would take such a hit.

I've hidden from the decision for a month - needed to adjust - now after seeing the surgeon and the oncologist, I know I need to decide between surgery and HT/RT asap.

I honestly do not know what to do.

My gut doesn't want surgery or a catheter or learning to pee again - but it seems quicker.

So....I am here to hear.....is there another option ? Is it all sh*t so doesn't matter which I choose ?

I don't usually ask for help - but I need your help

Graeme

 

 

User
Posted 10 Oct 2024 at 09:08

Hello Graeme,

This is EXACTLY how I felt on diagnosis, and I swung back and forth between the two option, none of which seems appealing! Your staging as Adrian says may help to suggest the best route and and making a choice. I'm T3b N0 M0 and was offered and advised both routes by different professionals

Ultimately I went for HT/RT after being told the surgery would be none nerve sparing and would very likely need RT afterwards, (seemed like a double hit to me!). Had I been at an earlier stage with the cancer contained totally and offered nerve sparing, I think I would have gone surgery as liked the idea of the cancer being physically removed.

It's a hard choice to have to make, but hopefully once you've made your choice you will feel better that something is happening to move towards cure.

All the best to you, totally know how your feeling and it sucks, but there's loads of great advice and people on here to offer help .

 

User
Posted 10 Oct 2024 at 15:42

Hi Graeme,

As everyone has said, this is the difficult part, but try and console yourself that your cancer was caught early enough to give you that choice.

it’s not easy and everyone is different, John1975 had the same T3B staging as myself but chose HT/RT, I didn’t have the choice so was forced down the Ht/RT route. Given the choice, I would have opted for surgery knowing that I had a plan B of SRT. For me Plan B is now HT for life should my PSA start to rise above 2 now that I’ve stopped HT.

nobody can make the choice for you, even the consultants won’t, they like to leave it up to you. What I could suggest is that if you have a Maggies Centre near you, go along and see if they have a prostate cancer support group. If they have go long and speak to guys who have had surgery…they will be able to give you first hand experience of the surgeon who would be operating in you.

If you are given the option of 5 doses of RT without HT then that is certainly worth considering. For me it w@wass the HT that gave me all the issues, not RT.

Whichever option you choose, your life is about to change and you may think NOT for the better. But you WILL adapt to the new normal and hopefully come to terms with what this all means for you AND your OH. Keep yourself fit, busy and active, whichever treatment you choose this will help you enormously in getting through this,

I wish you all the best with your decision and your treatment,

Derek

 

User
Posted 11 Oct 2024 at 09:56

Hi Graeme.

You forgot your PSA level, mate. Unless it's high, I'm surprised that you weren't offered active surveillance.

Your Gleason score indicates that your cancer is relatively low grade, and prostate confined. However, because it's in several areas of the prostate, maybe that's why AS or SABR aren't options. It could be worth checking that this is the case.

As for feeling confused, that's natural mate. For most of us, the initial diagnosis is the most confusing and frightening time. Once you've got a treatment plan in place, you focus on that and getting better.

Good luck.👍

 

 

Edited by member 11 Oct 2024 at 17:36  | Reason: Typo

User
Posted 13 Oct 2024 at 20:53

I am being swayed.

This time last week I was leaning towards HT/RT, but your story and the stories from others have moved my thinking towards surgery now.

I think my bias towards HT/RT was partly so that I could manage my son (only 11yo) and my work. In other words, I could pretend nothing was wrong for a bit longer.  Basically, kicking the can down the road.

But, I have turned 180. My view now is to just get it done.

At least, that is today's opinion.

User
Posted 14 Oct 2024 at 16:56

Hi Graeme,

I hope we haven’t confused you too much or influenced you in your decision…all we can do is relate our own personal experiences. You should also remember that men (or their partners) tend to join these forums when they have an issue. I still think you would benefit by talking face to face with other men in a PCa support Group…All the men that join my Maggies Group really benefit from this when it comes to decision time. It may however not be your ‘thing’! That’s what I thought for 9 months until my wife dragged me along🤣
Whatever you decide you will feel much better once that decision has been made and a plan is in place, and you can start to prepare yourself for treatment starting.

all the best with your decision,

Derek

 

User
Posted 21 Oct 2024 at 20:51

hi

i am now in my 7th year of remission. Like most others, same dilemma - I took surgery at the Royal Marsden. I had 2 days incontinence problems, after 7 days very little discomfort. I had to wait 12 months for erections but I now have an active sex life (thanks in part to Ciallis). My choice was driven by the after effects of the hormone treatment. I am now 67 and fit as a fiddle.

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User
Posted 10 Oct 2024 at 07:51

Hi Graeme,

I think that if your gut doesn't want surgery, you're halfway to making a decision.

Surgery is a hit upfront followed potentially by a long recovery in terms of continence and possible ED. How experienced is the surgeon? Will surgery be nerve sparing? Etc..

HT/RT on the other hand is a long process with side effects that build up over time. 

If you can put details of your diagnosis in your bio, (Gleason, PSA and staging) people will be better able to offer advice based on that and their personal experiences. 

Good luck, 

Kev. 

User
Posted 10 Oct 2024 at 07:57

Hi Graeme.

I'm sorry that you've had to join the Club, but welcome mate.

Surgery or RT/HT is the most asked question here. Unfortunately there is no definitive answer. If you look at research of the outcomes of thousands of patients, there is little difference between the treatments. 

I selected surgery, but as treatments have progressed since my op, I think I'd now look at the new SABR treatment which only involves 5 sessions of radiotherapy.

I see that you are sixty and reasonably fit. It would help us to comment more specifically on your case, if you'd be kind enough to give your PSA level, cancer staging and Gleason score.

As for your question is it all sh*t? I think it's fair to say, no matter what treatment path you take, you'll be lucky if you don't step into the odd pile of it. 🙂

Edited by member 10 Oct 2024 at 08:52  | Reason: Typo

User
Posted 10 Oct 2024 at 09:08

Hello Graeme,

This is EXACTLY how I felt on diagnosis, and I swung back and forth between the two option, none of which seems appealing! Your staging as Adrian says may help to suggest the best route and and making a choice. I'm T3b N0 M0 and was offered and advised both routes by different professionals

Ultimately I went for HT/RT after being told the surgery would be none nerve sparing and would very likely need RT afterwards, (seemed like a double hit to me!). Had I been at an earlier stage with the cancer contained totally and offered nerve sparing, I think I would have gone surgery as liked the idea of the cancer being physically removed.

It's a hard choice to have to make, but hopefully once you've made your choice you will feel better that something is happening to move towards cure.

All the best to you, totally know how your feeling and it sucks, but there's loads of great advice and people on here to offer help .

 

User
Posted 10 Oct 2024 at 15:42

Hi Graeme,

As everyone has said, this is the difficult part, but try and console yourself that your cancer was caught early enough to give you that choice.

it’s not easy and everyone is different, John1975 had the same T3B staging as myself but chose HT/RT, I didn’t have the choice so was forced down the Ht/RT route. Given the choice, I would have opted for surgery knowing that I had a plan B of SRT. For me Plan B is now HT for life should my PSA start to rise above 2 now that I’ve stopped HT.

nobody can make the choice for you, even the consultants won’t, they like to leave it up to you. What I could suggest is that if you have a Maggies Centre near you, go along and see if they have a prostate cancer support group. If they have go long and speak to guys who have had surgery…they will be able to give you first hand experience of the surgeon who would be operating in you.

If you are given the option of 5 doses of RT without HT then that is certainly worth considering. For me it w@wass the HT that gave me all the issues, not RT.

Whichever option you choose, your life is about to change and you may think NOT for the better. But you WILL adapt to the new normal and hopefully come to terms with what this all means for you AND your OH. Keep yourself fit, busy and active, whichever treatment you choose this will help you enormously in getting through this,

I wish you all the best with your decision and your treatment,

Derek

 

User
Posted 10 Oct 2024 at 15:52

Hi mate

I'm T3a, but pre op they thought it was T2c. I chose surgery because I wanted the thing removed, rather than just "deactivated", and it meant that if it comes back, I've still got the option of RT to fall back on.

It's a difficult decision, which we've all (well, most of us) had to make, and it's not easy. All I can say is that my surgery appears to have been successful, and the side effects, whilst not what any of us would wish for, are a better alternative to having the four tumours they found still growing merrily inside me.

Good luck with your decision making, and whichever treatment you choose.

Keep us posted.

Ian.

User
Posted 10 Oct 2024 at 18:52

Hi,  Good luck. Being able to get rid of it is a huge upside.

Your diagnosis may make a choice more obvious.  Info such as your PSA, Gleason, Stage at least.  In many ways both choices are similar.  Some think surgery old fashioned but if it works it gives a good solution.  I can pee with a force good enough to represent England.

All the best, Peter

User
Posted 11 Oct 2024 at 00:23

Thanks to all of you.  Of course I am more confused than ever, but at least I am getting 1st hand views.

I have now updated my Bio with my vital statistics:

Gleason 3 + 4 = 7

Cribriform pattern 4

Organ-confined T2N0M0

I don't recall any mention of SABR. I assume it is because although my cancer is all in the prostate, it is all over the prostate and not specifically in one area. Either that, or it's just not their list of treatments in East Sussex.

Edited by member 11 Oct 2024 at 00:33  | Reason: Not specified

User
Posted 11 Oct 2024 at 09:56

Hi Graeme.

You forgot your PSA level, mate. Unless it's high, I'm surprised that you weren't offered active surveillance.

Your Gleason score indicates that your cancer is relatively low grade, and prostate confined. However, because it's in several areas of the prostate, maybe that's why AS or SABR aren't options. It could be worth checking that this is the case.

As for feeling confused, that's natural mate. For most of us, the initial diagnosis is the most confusing and frightening time. Once you've got a treatment plan in place, you focus on that and getting better.

Good luck.👍

 

 

Edited by member 11 Oct 2024 at 17:36  | Reason: Typo

User
Posted 11 Oct 2024 at 10:02
Hi Grazbo, very similar diagnosis to my Husband last year…he made the decision for surgery (aged 61) the reasons:

He wanted it ‘out of him’

Removing ‘the mothership’ theory! Possibility of less chance of re-occurance

Chance of RT if there was a recurrence in the future

Reasonably fit and healthy for surgery at his stage in life

The good thing was post RARP histology did show cancer was contained within prostate so that was reassuring confirmation.

We knew what the likely side effects would be; 9 months post RARP now, he is still partly incontinent, so it’s very slow but we can see an improvement but he is getting on with it and he is managing really well and we are getting on with life albeit he finds it frustrating at times!

Steve was 80% nerve sparing so we do expect the ED issues to resolve ultimately, this can take around two years for nerves to recover; we are just beginning the range of treatments/assistance to hopefully re-establish our sex life and believe we will get there…again sometimes frustrating and a longing for pre RARP days!

In summary, he finds the worst thing is the incontinence…but it is manageable…and despite all of this in retrospect he says he would still make the same decision. He feels he has given it the best chance of being cancer free!

Good luck with your decision

Debbie

User
Posted 11 Oct 2024 at 16:49

As others have said, it's a personal decision and everyone is different. 

I too found it initially overwhelming, life changing decisions in a wholly unfamiliar world. I was 61, fit and healthy, and diagnosed as Gleason 4+4 and T2c. I had several discussions with both surgeon and oncologist and what probably swung it was the oncologist saying he would, on balance, recommend surgery over HT/RT due to age, health, and diagnosis. The possibility of removing it 'cleanly' also appealed psychologically. 

Post op checks have been undetectable but very aware that this could change. 

I didn't like the catheter but it was an inconvenience rather than anything especially uncomfortable. Subsequent continence has been pretty decent with 1 pad per day, nights fine, and pad free at around 6 months. Exercise permitted at 3 months which was a relief and wasn't at all uncomfortable.  

ED recovery takes time and patience. Have been on Tadalafil 5mg, use a VED pump for rehabilitation, and Viridal injections which work. So some commitment needed but was able to restore a sex life within a few months. I found dry orgasms surprisingly easy to get used to. 

Good luck with whatever you choose. It isn't easy. At all. And everyone is different. But there's a lot of support here whichever path you follow. 

User
Posted 13 Oct 2024 at 20:42

Yeah, missed that - it was through the roof - picked up on the random health check in May as 12

 A blood test last month recorded as 10 - so still crazy high, but not moving in the wrong direction. I'll take any positive at the moment.

Hence the prognosis for "radical treatment" from the urologist.

 

 

User
Posted 13 Oct 2024 at 20:53

I am being swayed.

This time last week I was leaning towards HT/RT, but your story and the stories from others have moved my thinking towards surgery now.

I think my bias towards HT/RT was partly so that I could manage my son (only 11yo) and my work. In other words, I could pretend nothing was wrong for a bit longer.  Basically, kicking the can down the road.

But, I have turned 180. My view now is to just get it done.

At least, that is today's opinion.

User
Posted 14 Oct 2024 at 16:30

Your comment about managing your son made me wonder. 

In today's Times is an article by an MP who arranged to have 37 doses of RT in June.  Then the election was announced and he said he got up at 6am every day to have the RT then went out canvassing.  He said he felt tired towards the end but that might have been the election campaign as well.

User
Posted 14 Oct 2024 at 16:56

Hi Graeme,

I hope we haven’t confused you too much or influenced you in your decision…all we can do is relate our own personal experiences. You should also remember that men (or their partners) tend to join these forums when they have an issue. I still think you would benefit by talking face to face with other men in a PCa support Group…All the men that join my Maggies Group really benefit from this when it comes to decision time. It may however not be your ‘thing’! That’s what I thought for 9 months until my wife dragged me along🤣
Whatever you decide you will feel much better once that decision has been made and a plan is in place, and you can start to prepare yourself for treatment starting.

all the best with your decision,

Derek

 

User
Posted 21 Oct 2024 at 15:07

Hi Graeme,

Hope all goes well with you as well and am still trying to get my head around the thing. But better to get it picked up early and sorted before it decides to start moving.

Just read through your post and looks like i have the exact same prognosis and was also looking for some guidance so thanks for posting as it has also help me go down a similar path,

I have the nurse chat but am now waiting for the Consultation with the specialist as i have also been give the options of External Beam Radiotherapy or Robotic assisted Laparoscopic radical Prostatectomy (RALP).

Although the RALP I have been told the waiting list is 3 to 6 months think that is the best solution up to now.

 

Steve

User
Posted 21 Oct 2024 at 20:36

Originally Posted by: Online Community Member
I have the nurse chat but am now waiting for the Consultation with the specialist as i have also been give the options of External Beam Radiotherapy or Robotic assisted Laparoscopic radical Prostatectomy (RALP).

Hi Steve.

I see that you are Gleason 7 (3+4), T2N0M0, PSA 4.5, CPG2.

We're you not offered active surveillance?

Edited by member 21 Oct 2024 at 20:43  | Reason: Typo

User
Posted 21 Oct 2024 at 20:51

hi

i am now in my 7th year of remission. Like most others, same dilemma - I took surgery at the Royal Marsden. I had 2 days incontinence problems, after 7 days very little discomfort. I had to wait 12 months for erections but I now have an active sex life (thanks in part to Ciallis). My choice was driven by the after effects of the hormone treatment. I am now 67 and fit as a fiddle.

User
Posted 22 Oct 2024 at 08:20

Hi No not offered active surveillance?

User
Posted 22 Oct 2024 at 08:36

Morning Steve.

Im not medically trained but purely based on your cancer staging, Gleason and PSA, I'd have thought AS would have been an option. However, other risk factors, such as a strong family history of the disease, the exact location of the contained lesion(s), may have precluded this.

https://bmcurol.biomedcentral.com/articles/10.1186/s12894-023-01314-6#:~:text=While%20Active%20Surveillance%20(AS)%20is,are%20typically%20recommended%20active%20treatment.

Best of luck with whatever treatment you chose mate.

Edited by member 22 Oct 2024 at 09:05  | Reason: Link added.

User
Posted 22 Oct 2024 at 08:59

Thanks for your quick reply yes my dad also had Prostate cancer etc so perhaps that's why. Thanks for the link and your best wishes.

 

 

 
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