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Treatment decision age 70

User
Posted 18 Feb 2024 at 19:11

I would be interested in hearing from members who were diagnosed at age 70, 71 and 72 what the following was

PSA

Gleason

Treatment course decided on and rational behind the decision.

Thank you 

Ned

 

User
Posted 20 Feb 2024 at 13:04
Men look at treatment for PCa in terms of timing in different way which vary from wanting the cancer removed as soon as possible to doing nothing as long as possible and hopefully never. It is recognized that for some men this will result in overtreatment and for others treatment that can be past the best opportunity of eradicating the disease. For those intent on delaying radical treatment I think it better to be very carefully monitored and have treatment when the situation really calls for it rather than to decide to give it a predetermined set time before having it. One should also be mindful that although AS works for many people, in a fewer number of cases AS looks a good option but the patients have instead opted for surgery which has shown that their cancer was more advanced than thought and had they opted for AS they would have given their cancer a chance to develop past the optimum window for some treatments. Adrian has illustrated this aspect. As a leading Doctor has said, it is much easier to deal with a small amount of cancer found early than to let it have a chance to develop and gain extra heterogeneity.
Barry
User
Posted 27 Mar 2024 at 10:56

Hi Ned

Probably a bit late to this conversation.   But I will post my details to help you make decisions.

Age:  69,  will be 70 in June 2024

Got first raised PSA OF 23  about 1 yr ago when had a urinary tract infection.    Treated with course of antibiotics and PSA monitored.  Went down to 6.7 after 4 weeks and then 5.5 by July 2023.  Then a 6 month PSA went up again to 7.1 in November.   My GP advised a referral to Churchill Urology dept in Oxford.   MRI done in early Dec was positive.  Biopsy done just after xmas showed positive cores in left and right of prostate graded as Gleason score 7 (4+3) with grade group 3 prostate cancer.   

 

Like others,  the choice was either RARP Robot assisted radical prostatectomy) or RT/HT (Radiation/Hormone treatment).    There are side effects to both but possibly what swayed me was that if you have RARP first and recurrence is detected in the future,  then RT/HT is a possible second line of treatment.   If you opt to have RT/HT first,  then surgery is much more difficult as a second line of treatment.    I am lucky to have no other concurrent health issues so considered myself a good anaesthetic risk (I am a retired veterinary surgeon so reasonably savvy about health issues) so not worried about the general anaesthetic.

So I opted for RARP and that was done on 9th March.    I was amazed how well I felt within a few days.   Yes there is some discomfort after surgery but I stopped taking any painkillers after 3 days.     Urethral catheter was removed at 7 days post surgery and I have not had an incontinence issues.    I had already stocked up on pads and incontinence pants and have used none so far.  

The surgeon tried to do some nerve sparing esp on one side and to date have had no spontaneous erections.      However after reading others comments on this forum,  I have started myself on 20mg Cialis twice weekly as from 3 days ago.    I have also started to use a penis pump twice daily for a few minutes just to try to get some penile rehabilitation.   I know there are very expensive Somaerect pumps at over £200 but I just bought a £19.99 one from Love Honey.   It is simple and functional and seems to do the job. 

https://www.lovehoney.co.uk/sex-toys/male-sex-toys/penis-pumps/p/basics-textured-penis-pump-7.5-inches-/a20955g28673.html

 I have just used it very gently twice a day and it seems to gradually inflate the penis and makes it reasonably firm for a few minutes.   Reading other posts,  it seems that early penile rehabilitation with a penis pump may help reduce the chances of longterm Erectile Dysfunction issues.    I don't think it has any harmful effects as long as one is sensible with its use. 

I could not drive a car for 2 weeks and I will be careful with lifting objects for another 4 weeks.   Otherwise life has returned to probably 98% normality less than 3 weeks after surgery.  I take as much exercise as possible and have just come back from a brisk 3 mile walk with my dog. 

So far I am very pleased I have gone down the surgery route.  I have a follow up appointment with my surgeon at the end of May where he will presumably give me the result of histology on the removed prostate and I will get a PSA test a few days before that appointment. 

Good luck with your own treatment pathway whatever you decide.  

 

 

 

 

User
Posted 27 Mar 2024 at 13:03

Originally Posted by: Online Community Member
So I opted for RARP and that was done on 9th March.    I was amazed how well I felt within a few days.   Yes there is some discomfort after surgery but I stopped taking any painkillers after 3 days. Urethral catheter was removed at 7 days post surgery and I have not had an incontinence issues. 

Hi Mark,

Welcome to the forum.

I see you were a veterinary surgeon and ironically, your urology surgeon seems to be the dogs b*ll*cks. To be making such a full and rapid recovery with no incontinence issues, is truly remarkable, long may it continue. He must have done a hell of a good job.

Thanks for posting, it refreshing to hear about successful outcomes. 

User
Posted 18 Feb 2024 at 19:11

I would be interested in hearing from members who were diagnosed at age 70, 71 and 72 what the following was

PSA

Gleason

Treatment course decided on and rational behind the decision.

Thank you 

Ned

 

User
Posted 22 Mar 2024 at 11:48

Diagnosed with geelson 4-3 at age of 70 decided  on radical  prostectomy .surgery  3 days ago all well at the moment. Best of luck

User
Posted 22 Mar 2024 at 12:07

Ned@1

Diagnosed at 72, 12 years ago, Gleason Score 3+4, 4+3, PSA 5.6, prostatectomy, PSA < 0.003 since surgery.

 '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 26 Mar 2024 at 20:40

Thank you. Your husband’s decision to proceed as losing that surgery option in the future is what keeps bringing me back to surgery now. All the best on his recovery. Since his surgery is so recent if you would not mind sharing updates over the next couple weeks. That is also what is concerning to me the surgery recovery.

User
Posted 27 Mar 2024 at 15:13

Hi Lyneyre.

 

There are papers suggesting that use of VED devices should be started as soon as possible after RP surgery.   One quick reference I found was: 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4708600/

I am sure used carefully esp if one is not displaying incontinent issues can only be beneficial,   but I am only a vet.   My follow up check after surgery is not for another 2 months as follow up appointments are running a bit behind at the Churchill hospital and I do not want to wait that long before starting gradual rehabilitation.     It makes sense that if you stop using any part of your body,   muscle function, whether skeletal or smooth muscle tends to atrophy, especially if there has been damage or trauma to the associated nerves.    All prostate surgery affects the nerves which control penile erection,  even if the surgeon is skilled enough to do some nerve sparing.  I am not sure how much sparing was done in my case.   Inevitably I am sure all men ask their surgeon to spare as many nerves as possible.    But my surgeon said he works to 3 criteria in descending order of importance.   

1:  Remove all the prostate to ensure no possible tumour tissue left

2:   Get as good as possible bladder control to reduce incontinence issues as much as possible

3:   Try to reduce long term ED symptoms

User
Posted 27 Mar 2024 at 20:27

A good post Mark. I noted your comment about using the pump, but also noticed you used the adverb "gently". I also noticed you said about "being careful lifting objects for another four weeks". We have had people reporting hernias after carrying shopping bags, I think closing a car boot also. Don't be too eager to rush things, equally don't be over cautious and do nothing. I'm sure you'll find the right balance.

Dave

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User
Posted 19 Feb 2024 at 14:34

Hi Ned,

I was diagnosed 2016.

Age 70,

PSA 2.19,

Gleason 3+4=7,

5 cores out of 20 positive,

Offered Robotic surgery but asked for further consultation about Brachytherapy and after reading up about all the possible side affects i took the Brachytherapy route.

Regards John.

 

 

User
Posted 19 Feb 2024 at 15:10

Right Ned, I don't fit your age parameters but I'll post anyway

Dec 2020:

Age 66

Gleason 6 (3+3)

PSA 5.6

Only 2 out of 15 cores

T2A

Offered RP, RT and HT and AS. MDT recommended AS. I took that option on their advise

Sept 2022 

Age 67

PSA 6.6

Gleason (4+4) Later upgraded to Gleason 9 (4+5)

20 out of 24 cores

T3a

RT/HT or surgery. Opted for surgery, it was quicker and I couldn't face 37 hospital visits in 7 weeks for RT.

However, had the new, only 5 zaps of RT, been available, I'd have probably taken that.

Edited by member 19 Feb 2024 at 15:17  | Reason: Additional text.

User
Posted 19 Feb 2024 at 22:33

John,

What have you found with side effects, long term issues if any?

Thanks Ned

User
Posted 19 Feb 2024 at 22:39

Adrian,

It’s helpful to see how quickly your 3+3 went to a 4+5. I read so much about how slow things are and I would have believed a 3+3 would follow that. What is really significant to me is that you could still have Surgery. Had it metastasized at all? I would like to think I could take a year to sort things out.

Ned

User
Posted 19 Feb 2024 at 23:37

Adrian, 

Is it realistic to think not rushing into anything and taking a year and reevaluating where things are, or the Doctor’s just going to focus on my one outlier of 4+4(only 8 % tissue) and tell me I need to start treatment. The study I found reported in The Journal of Urology titled Most Gleason 8 Biopsies are downgraded at Prostatectomy - Does 4+4 =7.

Also study Urol Oncol. 2020 Titled Should all prostate needle biopsy Gleason score 4+4=8 prostate cancers be high risk? Found after prostatectomy that if patients had 3 predictive factors that associated with downgrading in almost 60% of patients that had 4+4. One, that < or = 2 biopsy cores of 4+4. Two, < or = 50% maximal tumor involvement of the cores demonstrating 4+4, and third the presence of a Gleason pattern 3 in separate biopsy cores. The probability of downgrading increased when combinations of these factors were present. I fit that in my pathology report so I am hesitant to run off screaming I have Gleason 8. It was only in one core minimally and I had the 2 3+4’s.

Ned

User
Posted 20 Feb 2024 at 05:18

Hi Ned,

The speed at which my disease apparently progressed alarmed me. I was fuious when I discovered that following my first biopsy in Dec 2020, I should have been given a 6 month follow up MRI but this had been overlooked. I was also told that it was likely that the first biopsy missed the more aggressive cancers cells

When I eventually got the follow up MRI and biopsy which was 14 months late, it showed I was Gleason 8 (4+4) in 20 out of 24 cores and that the cancer had just breached the prostate capsule. Following the prostatectomy it was upgraded to Gleason 9 (4+5) but this may have been caused by them putting me on Bical for a couple of months pre op .

I'm not medically qualified Ned. If your doctor deems it safe to leave you for a year before considering other treatment, then do so. But ensure that you have all the tests to ensure you're safe during that period.

It would be wrong of me to advise what course of action you should/could take.

Fortunately, to date, I have no detectable PSA, but there's obviously still a chance of recurrence.

My bone scan pre op was all clear.

 

 

 

Edited by member 20 Feb 2024 at 05:29  | Reason: Typo

User
Posted 20 Feb 2024 at 10:06

Hi Ned,

I have had no side affects ,no leaks some urgency to wee for a while and still get up a couple of times a night but i did before brachytherapy.Regular on the number two side and morning erections have come back after three years.I get 4 viagra once a month on prescription but still have ED but don't expect that side  to improve at 77.

Still drink wine and have not changed diet at all apart from dropping some foods to help with my Gout that only seems to reappear ever couple of years.If you click on my Avatar and scroll down a lot(sorry made a mess in the spacing) you can see my journey .I can't remember complaining about it to much but it did change my outlook on life and my vanishing point. Good luck with your choice.

 

John.

User
Posted 20 Feb 2024 at 13:04
Men look at treatment for PCa in terms of timing in different way which vary from wanting the cancer removed as soon as possible to doing nothing as long as possible and hopefully never. It is recognized that for some men this will result in overtreatment and for others treatment that can be past the best opportunity of eradicating the disease. For those intent on delaying radical treatment I think it better to be very carefully monitored and have treatment when the situation really calls for it rather than to decide to give it a predetermined set time before having it. One should also be mindful that although AS works for many people, in a fewer number of cases AS looks a good option but the patients have instead opted for surgery which has shown that their cancer was more advanced than thought and had they opted for AS they would have given their cancer a chance to develop past the optimum window for some treatments. Adrian has illustrated this aspect. As a leading Doctor has said, it is much easier to deal with a small amount of cancer found early than to let it have a chance to develop and gain extra heterogeneity.
Barry
User
Posted 20 Feb 2024 at 14:02

Thank you John!

User
Posted 20 Feb 2024 at 14:03

Adrian,

I very much appreciate your comments.

User
Posted 20 Feb 2024 at 14:08

Barry,

i appreciate your input. I know I am now going through what all the others have been doing.

User
Posted 22 Mar 2024 at 11:48

Diagnosed with geelson 4-3 at age of 70 decided  on radical  prostectomy .surgery  3 days ago all well at the moment. Best of luck

User
Posted 22 Mar 2024 at 12:07

Ned@1

Diagnosed at 72, 12 years ago, Gleason Score 3+4, 4+3, PSA 5.6, prostatectomy, PSA < 0.003 since surgery.

 '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 24 Mar 2024 at 04:17

Appreciate your input. Just received by Decipher test results yesterday. Just barely under advanced. Was still barely intermediate. I am totally leaning surgery but want to wait until mid September for personal convenience reasons. Daughter back to college and celebration of our birthdays. It seems waiting around six months is fine.

User
Posted 24 Mar 2024 at 04:21

It seems Surgery is really the best route for me although I would love to watch and wait, but the last thing I want is it to break out of the prostate. I don’t want that ship to sail and lose the opportunity for surgery. I anticipate that is what I will do, but want to wait until September. I understand at least around six months waiting does not seem to matter to any outcomes.

User
Posted 24 Mar 2024 at 10:17

I had my surgery  on 19 of this month. Cathito out next Thursday and am hopping  to be 80% fitt by September. Best of luck

User
Posted 24 Mar 2024 at 10:30

Originally Posted by: Online Community Member

I had my surgery  on 19 of this month. Cathito out next Thursday and am hopping  to be 80% fitt by September. Best of luck

Hi Mal,

I'm glad your op went well. Wishing you a full and speedy recovery.

All the best mate.

 

User
Posted 26 Mar 2024 at 17:25

Hubby has just had his prostatectomy on Fri 22nd March at age 70.  His gleason scores showed all 20 cores but one were majority 3+3 with one at 3+4.   He was still given the choice of AS, surgery or HT/RT but was warned if he went the AS route his options would diminish with age.  If the cancer had only been in one or two areas he may have decided on the HT/RT route but even the consultant said he would choose surgery so that's what he decided on.  Catheter is being removed Thurs 28th and believe me he cannot wait!

User
Posted 26 Mar 2024 at 20:40

Thank you. Your husband’s decision to proceed as losing that surgery option in the future is what keeps bringing me back to surgery now. All the best on his recovery. Since his surgery is so recent if you would not mind sharing updates over the next couple weeks. That is also what is concerning to me the surgery recovery.

User
Posted 26 Mar 2024 at 20:42

Mal,

a concern I do also have is the surgery recovery over the initial month. If you would not mind sharing updates as you just had your surgery.

Thank you.

User
Posted 27 Mar 2024 at 10:56

Hi Ned

Probably a bit late to this conversation.   But I will post my details to help you make decisions.

Age:  69,  will be 70 in June 2024

Got first raised PSA OF 23  about 1 yr ago when had a urinary tract infection.    Treated with course of antibiotics and PSA monitored.  Went down to 6.7 after 4 weeks and then 5.5 by July 2023.  Then a 6 month PSA went up again to 7.1 in November.   My GP advised a referral to Churchill Urology dept in Oxford.   MRI done in early Dec was positive.  Biopsy done just after xmas showed positive cores in left and right of prostate graded as Gleason score 7 (4+3) with grade group 3 prostate cancer.   

 

Like others,  the choice was either RARP Robot assisted radical prostatectomy) or RT/HT (Radiation/Hormone treatment).    There are side effects to both but possibly what swayed me was that if you have RARP first and recurrence is detected in the future,  then RT/HT is a possible second line of treatment.   If you opt to have RT/HT first,  then surgery is much more difficult as a second line of treatment.    I am lucky to have no other concurrent health issues so considered myself a good anaesthetic risk (I am a retired veterinary surgeon so reasonably savvy about health issues) so not worried about the general anaesthetic.

So I opted for RARP and that was done on 9th March.    I was amazed how well I felt within a few days.   Yes there is some discomfort after surgery but I stopped taking any painkillers after 3 days.     Urethral catheter was removed at 7 days post surgery and I have not had an incontinence issues.    I had already stocked up on pads and incontinence pants and have used none so far.  

The surgeon tried to do some nerve sparing esp on one side and to date have had no spontaneous erections.      However after reading others comments on this forum,  I have started myself on 20mg Cialis twice weekly as from 3 days ago.    I have also started to use a penis pump twice daily for a few minutes just to try to get some penile rehabilitation.   I know there are very expensive Somaerect pumps at over £200 but I just bought a £19.99 one from Love Honey.   It is simple and functional and seems to do the job. 

https://www.lovehoney.co.uk/sex-toys/male-sex-toys/penis-pumps/p/basics-textured-penis-pump-7.5-inches-/a20955g28673.html

 I have just used it very gently twice a day and it seems to gradually inflate the penis and makes it reasonably firm for a few minutes.   Reading other posts,  it seems that early penile rehabilitation with a penis pump may help reduce the chances of longterm Erectile Dysfunction issues.    I don't think it has any harmful effects as long as one is sensible with its use. 

I could not drive a car for 2 weeks and I will be careful with lifting objects for another 4 weeks.   Otherwise life has returned to probably 98% normality less than 3 weeks after surgery.  I take as much exercise as possible and have just come back from a brisk 3 mile walk with my dog. 

So far I am very pleased I have gone down the surgery route.  I have a follow up appointment with my surgeon at the end of May where he will presumably give me the result of histology on the removed prostate and I will get a PSA test a few days before that appointment. 

Good luck with your own treatment pathway whatever you decide.  

 

 

 

 

User
Posted 27 Mar 2024 at 13:03

Originally Posted by: Online Community Member
So I opted for RARP and that was done on 9th March.    I was amazed how well I felt within a few days.   Yes there is some discomfort after surgery but I stopped taking any painkillers after 3 days. Urethral catheter was removed at 7 days post surgery and I have not had an incontinence issues. 

Hi Mark,

Welcome to the forum.

I see you were a veterinary surgeon and ironically, your urology surgeon seems to be the dogs b*ll*cks. To be making such a full and rapid recovery with no incontinence issues, is truly remarkable, long may it continue. He must have done a hell of a good job.

Thanks for posting, it refreshing to hear about successful outcomes. 

User
Posted 27 Mar 2024 at 13:20

Originally Posted by: Online Community Member
I have also started to use a penis pump twice daily for a few minutes just to try to get some penile rehabilitation. I know there are very expensive Somaerect pumps at over £200 but I just bought a £19.99 one from Love Honey. It is simple and functional and seems to do the job.

Advice is not to use a vacuum pump until after your 6 week post-op appointment

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 27 Mar 2024 at 15:13

Hi Lyneyre.

 

There are papers suggesting that use of VED devices should be started as soon as possible after RP surgery.   One quick reference I found was: 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4708600/

I am sure used carefully esp if one is not displaying incontinent issues can only be beneficial,   but I am only a vet.   My follow up check after surgery is not for another 2 months as follow up appointments are running a bit behind at the Churchill hospital and I do not want to wait that long before starting gradual rehabilitation.     It makes sense that if you stop using any part of your body,   muscle function, whether skeletal or smooth muscle tends to atrophy, especially if there has been damage or trauma to the associated nerves.    All prostate surgery affects the nerves which control penile erection,  even if the surgeon is skilled enough to do some nerve sparing.  I am not sure how much sparing was done in my case.   Inevitably I am sure all men ask their surgeon to spare as many nerves as possible.    But my surgeon said he works to 3 criteria in descending order of importance.   

1:  Remove all the prostate to ensure no possible tumour tissue left

2:   Get as good as possible bladder control to reduce incontinence issues as much as possible

3:   Try to reduce long term ED symptoms

User
Posted 27 Mar 2024 at 16:53

Mark,

That is terrific recover news for you and the type of information I am looking for. Thank you!

Ned

User
Posted 27 Mar 2024 at 20:27

A good post Mark. I noted your comment about using the pump, but also noticed you used the adverb "gently". I also noticed you said about "being careful lifting objects for another four weeks". We have had people reporting hernias after carrying shopping bags, I think closing a car boot also. Don't be too eager to rush things, equally don't be over cautious and do nothing. I'm sure you'll find the right balance.

Dave

User
Posted 27 Mar 2024 at 20:47

Originally Posted by: Online Community Member

Hi Lyneyre.

 

There are papers suggesting that use of VED devices should be started as soon as possible after RP surgery.   One quick reference I found was: 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4708600/

I am sure used carefully esp if one is not displaying incontinent issues can only be beneficial,   but I am only a vet.   My follow up check after surgery is not for another 2 months as follow up appointments are running a bit behind at the Churchill hospital and I do not want to wait that long before starting gradual rehabilitation. 

 The research you have linked is 11 years old and American - it talks about an early start as one month post-op but in America, post-op consultation is often 4 weeks post-op whereas in England it is supposed to be 6 weeks and more recently has been creeping to 7-8 weeks in some regions :-(   

You are fortunate to have regained continence so quickly and may have felt confident making that judgment for yourself but it is important that other readers here are aware that the NICE / BAUS guidance to primary and secondary care is that a VED should not be prescribed before the post-op review. The surgeon will want to know that the urethral join is secure, no sign of random clips or stricture and there is no sign of urine leaking into the pelvic / penile tissue before agreeing to the use of a VED. Sadly, many ICB's / NHS trusts have blocked the prescribing of pumps now so men in those areas either have to  purchase themselves or do without. Plus there is a small trade in second-hand pumps on this forum 😂

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 29 Mar 2024 at 11:04

Hi Dave

Yes I used the word "gently" for obvious reasons.     I would not even consider using gentle use of a penile pump if I was incontinent or getting any pain or still on any painkillers.     I stopped painkillers 3 days after the operation.     As a vet,  I never advocated any rehab exercise until an animal was off painkillers.   Pain is there for a reason to protect an area from further damage.     But I think if one is sensible,  then gentle penile rehabilitation can be useful.    Also doing something is better than being told to do nothing and just wait.     Again using the vet analogy,   it was often better to get clients to do something with their animals,  whether cold hosing a swollen leg on a horse or daily light walking exercise because they psychologically were more positive with doing something.   

So that is just my take on recovery and I am sure everyone is different.    I think often recovery protocols in the NHS are standardised and my feeling is that they possibly are tailored for those on the slowest recovery pathway.     I tried in my professional life to give a recovery plan which was individually tailored to the animal.    But we were not under the time or economic constraints of a doctor or health professional in the NHS so it is easier for them to use a "one size fits all approach".  

Mark

User
Posted 09 Jul 2024 at 02:32

Mark,

I hope your recovery is continuing well. A question regarding your surgery. Did your Surgeon remove any lymph nodes for biopsy?

Ned

User
Posted 09 Jul 2024 at 11:20

Hi Ned

Yes recovery going well.  Had follow up PSA at end of May and it was >0.01 so well pleased with that.    Met surgeon at post op consult a few days after that PSA test on 30th May and he was very pleased with my progress.  No sign of breakout from prostate on histology of the removed organ.  He did not take lymph nodes or biopsy them as the PET scan I had before surgery did not indicate any spread away from the prostate.  MRI was also negative for spread.   No incontinence issues whatsoever but still have ED.  Pump helps and on 20mg Talalafil every 4 days for 3 months.   Use the pump at least twice weekly.    Surgeon suggested 5mg every day but I do get headaches with daily dose so changed myself to 20mg every 4 days (only get headache issues one day in 4 then).    Have tried Viagra and sometimes helps a bit (50mg single dose) but not always.  However still early days on the ED front.     Feel physically 100% and planning next holidays in November to India.   Feel very lucky compared to others.   Good luck.   Mark

User
Posted 09 Jul 2024 at 14:27

Mark,

Thank you for your response and glad to hear how well things are going.

Ned

User
Posted 10 Jul 2024 at 04:34

Ned,

I have just read throgh this thread again and what you originally requested omits a very important factor, that of staging, because this can rule out some treatments if advanced. Prostate Cancer is a complex disease comprising different types of cancer which can progress in different ways in ivairious individuals and may respond differently to varioustreatments at different times. So due to nuisances it is difficult to form set opiniions on what might be best for an indidual by way of treament. There are plusses and mimuses with all treatments, further compounded by the severity of potential side effects, so it's not possible to say what is best due to diverse factors and how a man evaluates these. Many have found the information gven in the 'Tool Kit' to be helpful in forming their opinion on what is rightt for them, which also takesinto account individual suitability. https://shop.prostatecanceruk.org//our-publications/all-publications/tool-kit?limit=100

 

Barry
User
Posted 10 Jul 2024 at 07:34

Originally Posted by: Online Community Member
Yes recovery going well.  Had follow up PSA at end of May and it was >0.01 so well pleased with that.

Hi Mark.

Fantastic news, but do you mean < 0.01?

My PSA has been undetectable for the last 18 months, touch wood,  <0.02 which is the lowest our laboratory measures to.

I know you're using a pump, and it is very early days regarding ED, but have you ever considered injections. They were the only solution for me, as my op was non nerve sparing. Invicorp did the trick! I'll never forget the thrill of obtaining an erection again when I thought I was I was doomed to non penetrative sex for the rest of my life.

I think my ED clinic appointment was about 4 months post op and that's when my GP started prescribing the drug. The only downside for me was perfecting the injecting technique but that obviously wouldn't be a problem to you.

 

Edited by member 10 Jul 2024 at 08:19  | Reason: Additional text

User
Posted 10 Jul 2024 at 16:12

Barry,

You are absolutely right about the nuances in each one’s specific case. Even then treatment protocols continue to change it appears over time from more aggressive approaches to everyone to lesser treatments as even today researchers learn more. I am sure as with any treatment many would wish they had more time to wait for more advanced newer treatments maybe less aggressive even for higher grade. I had lymphoma 20 years ago and have seen all the treatment protocols have changes and new drugs introduced. I am scheduled for surgery Aug 15th. The Surgeon wishes to take out lymph nodes for biopsy although my PET shows nothing and only mild uptake 3.1 and 3.6 in each lobe. He talks about microscopic infiltration not seen in a PET. This is all due to one core of Gleason 8 4+4.  Everything else was favorable. Only one 7 3+4 and 6’s. This is for possible adjuvant radiation plus hormone treatment. Now I read there is really lack of good solid studies on adjuvant treatment right  after surgery or waiting and then having salvation treatment when it appears. The long term life outcome in each case seems to be not too different. I am hesitant to have multiple nodes removed for possible lymphedema. I actually have a follow up with the surgeon next week to just go into more detail and discuss the lymph node dissection. It seems because of the Gleason 8 protocol calls for lymph node dissection. I don’t know if he would be willing to put more emphasis on the PET showing nothing and not remove them or ethically he feels he has too. Another option I want to ask is if he could just take one or two closest nodes and not the multiple nodes that may not have anything. Another option I want to ask is whether it’s possible for prior to surgery can they access the nodes by a fine needle biopsy, or even during surgery without the nodes coming out. My decipher was 60 intermediate, and the Surgeon says yes, but 61 puts me up in the higher grade. Then though i pointed out a graph documenting accuracy of decipher showed not that many in the Gleason 8 showed up in the 61 to 70, but then jumps alot above 70 to 8’s, 9’s and 10’s. I am still going forward but think after I heal from the surgery if they want me to proceed to adjuvant radiation I might decline and wait for salvage. 
Ned

 

User
Posted 10 Jul 2024 at 17:01

Wow! Ned you really know your stuff.👍

As I've probably already said, I was Gleason 8 (4+4), T2c, PSA 5.6, pre op. The surgeon, who  I trusted implicitly, said  it would be non nerving sparing, and that I may suffer incontinence and would not ever have a natural erection again. I told him to crack on. He never even mentioned lymph node removal.

He ended up removed lymph 9 nodes. I don't know if this was his intention pre op or whether he decided to remove them during the op. To date, I appear cancer free, so I'm glad he did what he thought was right.

Pre op, I knew very little about prostate cancer, and went along with what clinicians thought best. In relation to the actual operation, it seems my faith in the surgeon paid off.

 

User
Posted 10 Jul 2024 at 19:02

Adrian,

My surgeon is definitely top notch so I will put a lot of faith in him but do want to broach this subject. Initial consultation cover much, but as things progress and you learn so much from members on sites like this you do want to talk a second time which gets more difficult prior to the Surgery. Trying to get this extra consultation early was difficult as he was booked so much for his initial consultation in between his surgeries and surgery follow up. The facilitator was like don’t worry you have a pre op zoom with the Doctor two weeks before the surgery to get your last questions answered. That’s great but I don’t plan to change but do want to get additional things cleared now than at last minute. She finally agreed to fit me in as I explained it would be much faster than the initial consultation. My wife had to miss my initial and can make this one, but did not want to mention that as then she might think it would take longer.

One thing I’am gaining confidence on is that their is little to not much discussion on the platform on patients getting their lymph nodes out with the prostate and having any lymphedema issues which is good.

Ned

 
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