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Decisions, decisions.....

User
Posted 03 Feb 2019 at 14:48

Hi all,
Well, I’m new to this club but thought I’d share some of my experience so far. Where should I begin?
I’d previously had no symptoms so I didn’t have any idea that anything was going wrong inside me. However, I had the chance (through my work) to get a full BUPA medical and I thought ‘why not?’ It seemed like a great opportunity to get myself checked over – I’m 56 and in reasonably good health.
On the day the medical was very thorough, including cholesterol tests, ECG, the works. All the results were very normal – I just had to wait for the results from the blood tests.
This is where the problem started – all the tests were fine but my PSA was 7.1 so I was recommended to get this checked out. At my GP, the test was 6.5 – still too high.
Both the Doctor at the medical & my GP did a DRE but didn’t think there was any issue. However my GP referred me to a Urologist who did think the prostate was a bit enlarged (I think its been sized at 41) and that there was a hint of a ‘bump’.
First step was an MRI scan which showed a ‘small suspicious area’.
Following this was a biopsy which unfortunately revealed that on the left side of the prostate, 2 out of 5 samples showed cancer. This was Gleason 8 (4+4). On the upside, it looks localised and was graded a T2B.
Clearly ‘something needs to be done’ which I expected to be a pretty straightforward decision to do an RP.
Since then I have seen an Oncologist who was more optimistic than I’d expected. He feels that I'm a slightly unusual case - my PSA and T score are medium risk, but the cancer is aggressive and thus high risk. Accordingly treatment is a good option and offered:

1. 5-6 months hormone therapy by monthly injection, then:
2. Seed Brachytherapy swiftly followed by:
3. 5 weeks External Beam Radiotherapy


He felt this would have a high chance of success and would retain the prostate (or at least what might be left of it after all that).
My concern would be the side effects – each of these treatments has possible effects. I’d imagine having all three treatments ongoing over the same time could increase the likely effects.
Has anyone experienced such a combination of treatments??
My next step is a bone scan (to see if anything has spread although it’s considered unlikely) and a chat with the surgeon to get his view on an RP. After this, I will have a difficult decision to make...….

 

User
Posted 03 Feb 2019 at 14:48

Hi all,
Well, I’m new to this club but thought I’d share some of my experience so far. Where should I begin?
I’d previously had no symptoms so I didn’t have any idea that anything was going wrong inside me. However, I had the chance (through my work) to get a full BUPA medical and I thought ‘why not?’ It seemed like a great opportunity to get myself checked over – I’m 56 and in reasonably good health.
On the day the medical was very thorough, including cholesterol tests, ECG, the works. All the results were very normal – I just had to wait for the results from the blood tests.
This is where the problem started – all the tests were fine but my PSA was 7.1 so I was recommended to get this checked out. At my GP, the test was 6.5 – still too high.
Both the Doctor at the medical & my GP did a DRE but didn’t think there was any issue. However my GP referred me to a Urologist who did think the prostate was a bit enlarged (I think its been sized at 41) and that there was a hint of a ‘bump’.
First step was an MRI scan which showed a ‘small suspicious area’.
Following this was a biopsy which unfortunately revealed that on the left side of the prostate, 2 out of 5 samples showed cancer. This was Gleason 8 (4+4). On the upside, it looks localised and was graded a T2B.
Clearly ‘something needs to be done’ which I expected to be a pretty straightforward decision to do an RP.
Since then I have seen an Oncologist who was more optimistic than I’d expected. He feels that I'm a slightly unusual case - my PSA and T score are medium risk, but the cancer is aggressive and thus high risk. Accordingly treatment is a good option and offered:

1. 5-6 months hormone therapy by monthly injection, then:
2. Seed Brachytherapy swiftly followed by:
3. 5 weeks External Beam Radiotherapy


He felt this would have a high chance of success and would retain the prostate (or at least what might be left of it after all that).
My concern would be the side effects – each of these treatments has possible effects. I’d imagine having all three treatments ongoing over the same time could increase the likely effects.
Has anyone experienced such a combination of treatments??
My next step is a bone scan (to see if anything has spread although it’s considered unlikely) and a chat with the surgeon to get his view on an RP. After this, I will have a difficult decision to make...….

 

User
Posted 03 Feb 2019 at 19:06

Hi Jamie770, welcome to the community. Sorry you've joined our club but you are in the right place for help.

It’s good your employer offered the checkup.

With the cancer being contained a radical prostatectomy, EBRT or brachytherapy plus EBRT are all options. The brachytherapy/EBRT combination has shown a lot of promise. 

Side effects will be present after any of the treatments.

Ask the surgeon if the tumours you have offer the possibility of nerve sparing radical prostatectomy. This will give you the chance of preserving erectile function.

The prostatectomy offers a cure with the side effects front loaded. You waken up after the operation with a catheter in situ but your recovery starts straight away.

With brachytherapy/EBRT the side effects will slowly build up over time but it still offers a curative option. The hormone therapy will also give you side effects.

Download the toolkit from this site, it may also be worthwhile having a chat with the specialist nurses here on 0800 074 8383.

Ian

Ido4

User
Posted 03 Feb 2019 at 20:27
Plus it is easier to do salvage after surgery than vice versa
User
Posted 03 Feb 2019 at 21:13
Plus,

And to be clearer regarding side effects, each treatment option has a number of POTENTIAL side effects, including life.

Not all potential side effects are experienced by every one even if they undergo the same treatment option.

Makes not a lot of sense really. Men have the same basic bits in the same place. The same treatment option may have zero/little/some/major side effects.

Read and consult widely, then choose wisely on what you believe is best for you with all outcomes considered and fully understood.

atb

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 03 Feb 2019 at 21:52
The decision is yours but you would do well to research the options and study the 'Toolkit' first as Ian has said. A case can be made for either surgery or a form of HT/RT. Either form of treatment done well is likely to provide similar success rates for suitable candidates but the main difference is in the timing and extent of side effects. Surgery is more frequently administered to younger men like yourself which gradually changes to RT for older men. One reason for this is that RT can initiate further cancer or a recurrence years latter which would more likely affect men with more years to live.

It's always interesting to read how individuals respond to their respective treatments but it should be remembered that they do not necessarily represent the experiences of many men. Let's say, as has happened, a member said he was permanently incontinent following surgery. You might think, I won't have that treatment then. However, permanent rather than temporary incontinence is very rare but is a possibility you will have to factor in along with other pros and cons when making your treatment decision.

Suggest you list the Pros and Cons of each form of treatment as shown in the 'Toolkit' and can be found elsewhere and also try to establish whether in the case of surgery this would be by 'nerve sparing' to increase the chance of preservation of sexual erections and how likely it would be that surgery might have to be supplemented by HT/RT.

Wish you well in making your choice.

Barry
User
Posted 04 Feb 2019 at 04:12
Hi Jamie,

I would counsel you to to get second opinions from an esteemed prostate surgeon and from another oncologist.

Then you will have more information on which to base your decision as to the way forward.

Best of luck, anyway.

Cheers, John.

User
Posted 02 Mar 2019 at 03:15

Best of luck with the op. I went through a very similar anount of hand wringing and as you no doubt discovered,  there’s no easy way to come to a conclusion even with the masses of data out there.

My own story is here: https://www.facebook.com/connell.mcmenamin/posts/10214747181606087

 

thankfully, so far I've come out the other side with a good result and limited side effects (which continue to improve).

The only advice I would give is take it easy with your recovery. You may look and feel surprisingly well, but it's easy to overdo things. I thought I felt back to normal after about 6 weeks, but at 12 weeks I felt so much better. 

hope it all goes well!

Connell

User
Posted 03 Mar 2019 at 17:58

Best of everything for your surgery and recovery. We are 6 weeks post surgery and doing great. Things have changed but nothing unmanageable. Having surgery at 56 like my hubby you are more likely to have a better recovery. Everyone is different but I think age is a factor  AND pelvic floor exercises!

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User
Posted 03 Feb 2019 at 19:06

Hi Jamie770, welcome to the community. Sorry you've joined our club but you are in the right place for help.

It’s good your employer offered the checkup.

With the cancer being contained a radical prostatectomy, EBRT or brachytherapy plus EBRT are all options. The brachytherapy/EBRT combination has shown a lot of promise. 

Side effects will be present after any of the treatments.

Ask the surgeon if the tumours you have offer the possibility of nerve sparing radical prostatectomy. This will give you the chance of preserving erectile function.

The prostatectomy offers a cure with the side effects front loaded. You waken up after the operation with a catheter in situ but your recovery starts straight away.

With brachytherapy/EBRT the side effects will slowly build up over time but it still offers a curative option. The hormone therapy will also give you side effects.

Download the toolkit from this site, it may also be worthwhile having a chat with the specialist nurses here on 0800 074 8383.

Ian

Ido4

User
Posted 03 Feb 2019 at 20:27
Plus it is easier to do salvage after surgery than vice versa
User
Posted 03 Feb 2019 at 21:13
Plus,

And to be clearer regarding side effects, each treatment option has a number of POTENTIAL side effects, including life.

Not all potential side effects are experienced by every one even if they undergo the same treatment option.

Makes not a lot of sense really. Men have the same basic bits in the same place. The same treatment option may have zero/little/some/major side effects.

Read and consult widely, then choose wisely on what you believe is best for you with all outcomes considered and fully understood.

atb

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 03 Feb 2019 at 21:52
The decision is yours but you would do well to research the options and study the 'Toolkit' first as Ian has said. A case can be made for either surgery or a form of HT/RT. Either form of treatment done well is likely to provide similar success rates for suitable candidates but the main difference is in the timing and extent of side effects. Surgery is more frequently administered to younger men like yourself which gradually changes to RT for older men. One reason for this is that RT can initiate further cancer or a recurrence years latter which would more likely affect men with more years to live.

It's always interesting to read how individuals respond to their respective treatments but it should be remembered that they do not necessarily represent the experiences of many men. Let's say, as has happened, a member said he was permanently incontinent following surgery. You might think, I won't have that treatment then. However, permanent rather than temporary incontinence is very rare but is a possibility you will have to factor in along with other pros and cons when making your treatment decision.

Suggest you list the Pros and Cons of each form of treatment as shown in the 'Toolkit' and can be found elsewhere and also try to establish whether in the case of surgery this would be by 'nerve sparing' to increase the chance of preservation of sexual erections and how likely it would be that surgery might have to be supplemented by HT/RT.

Wish you well in making your choice.

Barry
User
Posted 04 Feb 2019 at 04:12
Hi Jamie,

I would counsel you to to get second opinions from an esteemed prostate surgeon and from another oncologist.

Then you will have more information on which to base your decision as to the way forward.

Best of luck, anyway.

Cheers, John.

User
Posted 11 Feb 2019 at 11:24

Hi all,

Thanks for the replies, its good to know that there are others who've been through this and can appreciate what its like.

I got the toolkit, very good but it sometimes feels like a bewildering amount of information.

My journey continues this week with a bone scan (fingers crossed!) and I meet the surgeon on Thursday.

After that I'll need to make my decision....

Cheers,

Jamie

User
Posted 14 Feb 2019 at 16:08

Well, the bone scan has mercifully come back clear.

The surgeon has made a compelling case for surgery but unfortunately it will not be nerve-sparing on one side. I can't help but wonder if future erections (if any) will be banana shaped!

Now I need to make the decision...….

User
Posted 15 Feb 2019 at 23:30

If you feel you've already made your decision I don't wish to unnerve you, but there is another online PCa community that seems to give a lot more detailed information than I've seen so far on this site.

To take a look, Google HealthUnlocked or Malecare.

It is primarily an American site, but gives a compelling case for Brachytherapy.

Brachytherapy doesn't entirely eliminate the possibility of ED (erectile dysfunction) but it does reduce it and is claimed to be as equally effective if not more so than RP. It's worth looking.

Whatever you choose, before you get drawn into the treatment stage of your cancer journey, Prostate Cancer UK have some very good guidance on erectile rehabilitation following either RP or RT.

The guidance is aimed at professionals, but  I found it helpful.

 

 

User
Posted 27 Feb 2019 at 13:14

Well, after much prevarication and hand wringing I've decided to go with surgery.

Basically my feelings are that as the cancer is pretty aggressive (Gleason 8) and its been picked up quite early I'm keen to get it out.

Surgery also leaves the way open for radiotherapy should it be required in the future.

Just got my op date this morning - 18 March.

Can't wait...…..….not

 

 

User
Posted 02 Mar 2019 at 03:15

Best of luck with the op. I went through a very similar anount of hand wringing and as you no doubt discovered,  there’s no easy way to come to a conclusion even with the masses of data out there.

My own story is here: https://www.facebook.com/connell.mcmenamin/posts/10214747181606087

 

thankfully, so far I've come out the other side with a good result and limited side effects (which continue to improve).

The only advice I would give is take it easy with your recovery. You may look and feel surprisingly well, but it's easy to overdo things. I thought I felt back to normal after about 6 weeks, but at 12 weeks I felt so much better. 

hope it all goes well!

Connell

User
Posted 03 Mar 2019 at 17:58

Best of everything for your surgery and recovery. We are 6 weeks post surgery and doing great. Things have changed but nothing unmanageable. Having surgery at 56 like my hubby you are more likely to have a better recovery. Everyone is different but I think age is a factor  AND pelvic floor exercises!

 
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