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User
Posted 19 Apr 2020 at 21:40

I have very recently been diagnosed with prostate cancer with a PSA of 10.5 and following MRI scan and a biopsy a Gleason score  of 7. There are 2 areas, one with 4+3s and the other 3+3s. Apparently still contained within the capsule. 

My consultant says my options are prostatectomy or radiotherapy. However due to coronavirus nothing is going to be done until whenever so in the interim he said I should go on hormone therapy to keep it at bay. 

I asked about other options such as seed brachytherapy or HIFU. He dismissed HIFU out of hand and said it wasn't proven and still had side effects.  He also said brachytherapy wasn't suitable for me without any proper explanation. When I queried the brachytherapy and told him that I knew of other similar cases where men had received it successfully he got a bit flustered.  I've since found out that his hospital doesn't do it. 

I also asked him if his hospital used a robot for surgery he said it wasn't working but he could send me to Norwich.  I've since found out that there isn't one at his hospital. 

So according to him my choices are limited to what he said. I'm concerned about this and want to explore further. 

I am concerned about the possible side effects of surgery, particularly the urinary incontinence as I'm still working. 

Any suggestions please. 

User
Posted 20 Apr 2020 at 08:16

Silke

Welcome to the site, it may be useful to download the toolkit from the site and look at the treatment options. Also may be worth a call to the nurses on this site.  

You can look up your surgeons performance data on the BAUS website. 

Unfortunately with the current covid crisis getting the treatment of choice may be a challenge. 

Thanks Chris

User
Posted 20 Apr 2020 at 09:09
Whatto Silkie,

On this very day exactly 10 years ago I underwent Low Dose Radiation (LDR) at Bart's Hospital in London and had 63 Iodine-223

seeds inserted into my Prostate. I invite you to look at my profile for full and more exact details. Once diagnosed and having researched the treatment options open to me I locked on to LDR and would not be budged. At the time of the Diagnosis the Consultant Urologist

attempted to pencil me in his diary for surgical removal of my prostate . I told him not to make any plans for my surgery as I wanted to pursue the options. The more I learned about LDR the more it seemed to suit me and I requested that I be transferred to a different hospital where Brachytherapy was an option. Even at that stage one of the LDR team attempted to talk me out of my decision and suggested that Active Surveillance would be a better choice. I was having none of it and would not be persuaded to alter my decision'

Now 10 years later to this exact day and minute the procedure was carried out.

Silkie, I don't tell you this to advance my own status but tell you for you to consider that LDR was perfect treatment for me.

I have to tell you without any boost to my ego that I am now 75 years old, ride my mountain bike through rough terrain for 90 minutes every other day, play Golf,before Covid-19 that is,and enjoy to the full a very active and traveled life.

If you would prefer to email me direct please feel free.

Do your research. Take your time. Stick to your decision.

I hope my tale helps.

Best wishes

Michael Chigwell2010.

User
Posted 20 Apr 2020 at 09:15

I think you've run up against one of my peeves - patients not being offered appropriate treatments because the hospital doesn't do them. You might ask to be referred to a more major cancer treatment centre which will have more options, and specialists from each of them on the MDT (multi disciplinary team) which discusses your case.

Some hospitals get around this by having consultants from specialist centres come in and sit on their MDT and run clinics so patients are still considered for treatments the hospital doesn't offer. This happened to me, because my district general hospital doesn't do any radiotherapy, so they have consultants from Mount Vernon, a radiotherapy specialist centre, sit on their MDT, and as a result I was offered a combination of external beam radiotherapy and high dose rate brachytherapy.

HIFU is only offered in some specialist centres as a trial on the NHS. You didn't say what your staging is, but at a talk at UCLH, I think they said max staging for HIFU is T2a, and it must be in the rear half of the prostate (i.e. rear half, one side only). Other treatment centres may have different criteria. I would not be surprised if the trail has been suspended during covid, but I don't know.

User
Posted 20 Apr 2020 at 14:50
My own surgeon, Professor Whocannotbenamedhere, had to remove a diseased prostate only last week as the HIFU had failed. I asked him what he thought of HIFU: “Not much”, but then conceded “I am biased!”

If I were you I would be seeking out second opinions from two oncologists and another surgeon who does have a working Da Vinci robot to hand! You may need to travel, but I think your journey might well be classified as “essential” under the current lockdown😉.

Professor Whocannotbenamedhere told me he would not send a friend or relative to any surgeon who does less than 100 prostatectomies a year - he himself does 300-400 per annum and is approaching 4000 total world-wide.

Best of luck.

Cheers, John.

User
Posted 20 Apr 2020 at 17:19
I had low dose Brachytherapy, I decided that for me, it was the best option. I had to travel out of area to get it done but it was worth it. You could ask for a second opinion?

John

Gleason 6 = 3+3 PSA 8.8 P. volume 48 cc Left Cores 3/3, Volume = 20% PSA 10.8 Feb '19 PSA 1.2

Jan '20 PSA 0.3 July '20 0.1 Jan. 21 < 0.1 Dec 21 <0.01 June '22 <0.01 April '23  <0.01

User
Posted 21 Apr 2020 at 14:41

I was diagnosed with prostate cancer about 2 1/2 years ago. PSA 5.8, Gleason 3+4, and 2 of 12 cores at less than 5%. Prostate volume 25 cc.
When I looked at options Brachytherapy only looked viable at 3+3 Gleason. I stand to be corrected.
I found it very confusing and was worried about side effects of treatment.
I elected for active surveillance with PSA checks every 3 months and an annual MRI. I didn't elect for further biopsies. By January this year PSA was up to 4.7 ( it had gone down after biopsy) and the MRI diagnosed at T2a and a visible tumour after being T1 and not visible.
At that stage I decided that I needed to take some action and elected for a radical prostectomy by a highly recommended surgeon. He advocates open, nerve sparing surgery and was pretty sure that there would be no significant long term incontinence issue and about 80% chance of full erections (another of my worries) over time.
I had the operation 4 weeks ago yesterday. I still have a slight level of incontinence ( some slight leakage from late PM) but nothing that a small pad can't deal with and I'd expect this to have gone away within the next month or so. 
The histology report confirmed nothing at the margins, about 10% of the prostate cancerous and confirmed at Gleason 3+4. In conclusion. if I had to wait for treatment I would definitely elect for the hormone treatment to slow things. No treatment is without potential side effects ( either short term, long term or both) If you elect for surgery don't wait too long. If it spreads to the margins or breaks out there's a higher chance you may need further treatment or that nerves may be lost. 

User
Posted 21 Apr 2020 at 18:26

Hi Silkie,

I was diagnosed at the Lister in Stevenage Hertfordshire and at my appointment to decide my options the first specialist i spoke to seemed to think i would take his option of Radical removal was my best option as the Lister has the best Robotic removal equipment on site and he was the surgeon to perform it.

Before this meeting i had read as much as possible about Psa numbers,Gleason scores, and all the Mo-No etc.

But as well as that i had a friend that had had Brachytherpy  in the last four years with good results so this gave me more reason to look further in to it.

I was not sure if my numbers of PSA 2.19 Gleason 3+4 =7 No Mo and 5 cores of 20 positive could be within the Brachytherapy choice for me so i asked if i could see the Brachytherapy specialist that was at the Lister that day.

The Robotic surgeon said ok go and see the Brachytherapy  specialist then come back to me.

At the meeting with the Brachytherapy specialist i asked a lot more questions about some of my fears  with both procedures and it seemed that radical removal was the only option because of the 3+4 =7 being high numbers.

He answered all my questions and saw no reason after reading my notes why i should not go for Brachytherapy with him as the specialist ,but as he worked out of the Mount Vernon hospital i would have to go their.

I will never know if specialists always thinks theirs is the best option for you but i will choose to think they where both trying to do the best for you in their opinion.I did think about the meetings for some time after my decision but i am still pleased i took the Brachytherapy option.

Three years on and doing well please click my avatar for my Journey so far but also try to read as much as you can before you make your final decision and ask the many members on here for their ideas too.

 

Regards  John.

User
Posted 21 Apr 2020 at 21:40

Hi Silkie

Every man has a different journey. There are reams of medical evidence and reports  on all the different courses of action. I began to find all this information very confusing. The toolkit this organisation offers is very useful and well worth reading and reflecting on.

Sorry this is a bit long winded but it’s an insight into my storey and why I did what I did.

After all the initial tests I was a psa. 13, Gleason 7 , mri and biopsy concluded I was a t2b. My hospital was the Marsden via Epsom trust. I was 60, the oncologist and surgeons worked as one providing me with all the info I needed so excellent service. In the end I chose robotic RP. Main reason, it gave me more options if the cancer returned than most other options. The impact of long term HT did concern me. I checked out my surgeon - he did hundreds of robotic RP’s a year so all good there. Wife was always engaged in the process and very supportive and added value to conversations. The surgery is not trivial - for me 5 hours. Prior to surgery my surgeon advised I spend a lot of effort getting my core strong and overall fitness better. Surgery, which was done 18 months ago went without any hitches. I was one day in hospital, then home no incontinence issues after 10days. After one month hardly knew I had surgery. My histology report upgraded me to a T3b and Gleason 9. Between the MRI and surgery (about 6 weeks) the cancer broke through the capsule spread but the surgeon was skilled enough to dig it all out and my lymph nodes (18 of them) were tested negative. This outcome was bit of a shock as I didn’t realise prostate cancer could be so aggressive - lesson learnt. Yes I have ED issues, my pride and joy is a shadow of its former self - but I still have the pleasure of orgasm with a 70% erection.

At 18 months since surgery my PSA is still ‘undectectable’. I feel good about life. As a recovering alcoholic of 25 years one thing I learnt is to keep things in the day - and so today I am cancer free, go out and have fun!!! I don’t regret my decision. 

silkie - good luck in your quest, prostate cancer UK is a great source of unbiased information.

Show Most Thanked Posts
User
Posted 20 Apr 2020 at 08:16

Silke

Welcome to the site, it may be useful to download the toolkit from the site and look at the treatment options. Also may be worth a call to the nurses on this site.  

You can look up your surgeons performance data on the BAUS website. 

Unfortunately with the current covid crisis getting the treatment of choice may be a challenge. 

Thanks Chris

User
Posted 20 Apr 2020 at 09:09
Whatto Silkie,

On this very day exactly 10 years ago I underwent Low Dose Radiation (LDR) at Bart's Hospital in London and had 63 Iodine-223

seeds inserted into my Prostate. I invite you to look at my profile for full and more exact details. Once diagnosed and having researched the treatment options open to me I locked on to LDR and would not be budged. At the time of the Diagnosis the Consultant Urologist

attempted to pencil me in his diary for surgical removal of my prostate . I told him not to make any plans for my surgery as I wanted to pursue the options. The more I learned about LDR the more it seemed to suit me and I requested that I be transferred to a different hospital where Brachytherapy was an option. Even at that stage one of the LDR team attempted to talk me out of my decision and suggested that Active Surveillance would be a better choice. I was having none of it and would not be persuaded to alter my decision'

Now 10 years later to this exact day and minute the procedure was carried out.

Silkie, I don't tell you this to advance my own status but tell you for you to consider that LDR was perfect treatment for me.

I have to tell you without any boost to my ego that I am now 75 years old, ride my mountain bike through rough terrain for 90 minutes every other day, play Golf,before Covid-19 that is,and enjoy to the full a very active and traveled life.

If you would prefer to email me direct please feel free.

Do your research. Take your time. Stick to your decision.

I hope my tale helps.

Best wishes

Michael Chigwell2010.

User
Posted 20 Apr 2020 at 09:15

I think you've run up against one of my peeves - patients not being offered appropriate treatments because the hospital doesn't do them. You might ask to be referred to a more major cancer treatment centre which will have more options, and specialists from each of them on the MDT (multi disciplinary team) which discusses your case.

Some hospitals get around this by having consultants from specialist centres come in and sit on their MDT and run clinics so patients are still considered for treatments the hospital doesn't offer. This happened to me, because my district general hospital doesn't do any radiotherapy, so they have consultants from Mount Vernon, a radiotherapy specialist centre, sit on their MDT, and as a result I was offered a combination of external beam radiotherapy and high dose rate brachytherapy.

HIFU is only offered in some specialist centres as a trial on the NHS. You didn't say what your staging is, but at a talk at UCLH, I think they said max staging for HIFU is T2a, and it must be in the rear half of the prostate (i.e. rear half, one side only). Other treatment centres may have different criteria. I would not be surprised if the trail has been suspended during covid, but I don't know.

User
Posted 20 Apr 2020 at 14:50
My own surgeon, Professor Whocannotbenamedhere, had to remove a diseased prostate only last week as the HIFU had failed. I asked him what he thought of HIFU: “Not much”, but then conceded “I am biased!”

If I were you I would be seeking out second opinions from two oncologists and another surgeon who does have a working Da Vinci robot to hand! You may need to travel, but I think your journey might well be classified as “essential” under the current lockdown😉.

Professor Whocannotbenamedhere told me he would not send a friend or relative to any surgeon who does less than 100 prostatectomies a year - he himself does 300-400 per annum and is approaching 4000 total world-wide.

Best of luck.

Cheers, John.

User
Posted 20 Apr 2020 at 17:19
I had low dose Brachytherapy, I decided that for me, it was the best option. I had to travel out of area to get it done but it was worth it. You could ask for a second opinion?

John

Gleason 6 = 3+3 PSA 8.8 P. volume 48 cc Left Cores 3/3, Volume = 20% PSA 10.8 Feb '19 PSA 1.2

Jan '20 PSA 0.3 July '20 0.1 Jan. 21 < 0.1 Dec 21 <0.01 June '22 <0.01 April '23  <0.01

User
Posted 21 Apr 2020 at 14:41

I was diagnosed with prostate cancer about 2 1/2 years ago. PSA 5.8, Gleason 3+4, and 2 of 12 cores at less than 5%. Prostate volume 25 cc.
When I looked at options Brachytherapy only looked viable at 3+3 Gleason. I stand to be corrected.
I found it very confusing and was worried about side effects of treatment.
I elected for active surveillance with PSA checks every 3 months and an annual MRI. I didn't elect for further biopsies. By January this year PSA was up to 4.7 ( it had gone down after biopsy) and the MRI diagnosed at T2a and a visible tumour after being T1 and not visible.
At that stage I decided that I needed to take some action and elected for a radical prostectomy by a highly recommended surgeon. He advocates open, nerve sparing surgery and was pretty sure that there would be no significant long term incontinence issue and about 80% chance of full erections (another of my worries) over time.
I had the operation 4 weeks ago yesterday. I still have a slight level of incontinence ( some slight leakage from late PM) but nothing that a small pad can't deal with and I'd expect this to have gone away within the next month or so. 
The histology report confirmed nothing at the margins, about 10% of the prostate cancerous and confirmed at Gleason 3+4. In conclusion. if I had to wait for treatment I would definitely elect for the hormone treatment to slow things. No treatment is without potential side effects ( either short term, long term or both) If you elect for surgery don't wait too long. If it spreads to the margins or breaks out there's a higher chance you may need further treatment or that nerves may be lost. 

User
Posted 21 Apr 2020 at 18:26

Hi Silkie,

I was diagnosed at the Lister in Stevenage Hertfordshire and at my appointment to decide my options the first specialist i spoke to seemed to think i would take his option of Radical removal was my best option as the Lister has the best Robotic removal equipment on site and he was the surgeon to perform it.

Before this meeting i had read as much as possible about Psa numbers,Gleason scores, and all the Mo-No etc.

But as well as that i had a friend that had had Brachytherpy  in the last four years with good results so this gave me more reason to look further in to it.

I was not sure if my numbers of PSA 2.19 Gleason 3+4 =7 No Mo and 5 cores of 20 positive could be within the Brachytherapy choice for me so i asked if i could see the Brachytherapy specialist that was at the Lister that day.

The Robotic surgeon said ok go and see the Brachytherapy  specialist then come back to me.

At the meeting with the Brachytherapy specialist i asked a lot more questions about some of my fears  with both procedures and it seemed that radical removal was the only option because of the 3+4 =7 being high numbers.

He answered all my questions and saw no reason after reading my notes why i should not go for Brachytherapy with him as the specialist ,but as he worked out of the Mount Vernon hospital i would have to go their.

I will never know if specialists always thinks theirs is the best option for you but i will choose to think they where both trying to do the best for you in their opinion.I did think about the meetings for some time after my decision but i am still pleased i took the Brachytherapy option.

Three years on and doing well please click my avatar for my Journey so far but also try to read as much as you can before you make your final decision and ask the many members on here for their ideas too.

 

Regards  John.

User
Posted 21 Apr 2020 at 21:40

Hi Silkie

Every man has a different journey. There are reams of medical evidence and reports  on all the different courses of action. I began to find all this information very confusing. The toolkit this organisation offers is very useful and well worth reading and reflecting on.

Sorry this is a bit long winded but it’s an insight into my storey and why I did what I did.

After all the initial tests I was a psa. 13, Gleason 7 , mri and biopsy concluded I was a t2b. My hospital was the Marsden via Epsom trust. I was 60, the oncologist and surgeons worked as one providing me with all the info I needed so excellent service. In the end I chose robotic RP. Main reason, it gave me more options if the cancer returned than most other options. The impact of long term HT did concern me. I checked out my surgeon - he did hundreds of robotic RP’s a year so all good there. Wife was always engaged in the process and very supportive and added value to conversations. The surgery is not trivial - for me 5 hours. Prior to surgery my surgeon advised I spend a lot of effort getting my core strong and overall fitness better. Surgery, which was done 18 months ago went without any hitches. I was one day in hospital, then home no incontinence issues after 10days. After one month hardly knew I had surgery. My histology report upgraded me to a T3b and Gleason 9. Between the MRI and surgery (about 6 weeks) the cancer broke through the capsule spread but the surgeon was skilled enough to dig it all out and my lymph nodes (18 of them) were tested negative. This outcome was bit of a shock as I didn’t realise prostate cancer could be so aggressive - lesson learnt. Yes I have ED issues, my pride and joy is a shadow of its former self - but I still have the pleasure of orgasm with a 70% erection.

At 18 months since surgery my PSA is still ‘undectectable’. I feel good about life. As a recovering alcoholic of 25 years one thing I learnt is to keep things in the day - and so today I am cancer free, go out and have fun!!! I don’t regret my decision. 

silkie - good luck in your quest, prostate cancer UK is a great source of unbiased information.

 
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