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How do you decide on the optimal treatment?

User
Posted 15 Jul 2018 at 22:03

I have just been diagnosed with Prostrate Cancer which is localised to one area of the prostrate and is a 17mm tumour. My Gleeson score is 7(3+4) my PSA is 8 and I am T1 - no visible sign externally on the Prostrate. I have been given a range of options from Active Surveillance for a possible 2 -3 years, treatment now either Brachytherapy or Robotic Prostatectomy.  To be honest I am confused as to the best course of action and I would be glad to hear of how other people addressed this dilemma.  My instinct is to not rush into anything as the side effects are so drastic.  Would be particularly interested to hear of anyone who adopted the Active Surveillance approach had how long this was for plus any feedback on the side effects of robotic Prostatectomy.


 

User
Posted 15 Jul 2018 at 23:52
Sorry you’ve joined this infamous club, but I do assure you that you’re now part of a very worthwhile society.

Unbelievably and depending on aggression, this wicked illness gives one so many options and choices as to future treatment.

I obviously wish you well in the eventual choice you will eventually have to make but please be assured that there are experts out there who will give you every opportunity to have a long and promising prognosis.

David

User
Posted 16 Jul 2018 at 00:03
Hi Martin,

Welcome to this forum, though sorry it is because you have a PCa diagnosis.

AS can be a good option, at least for a time because it defers adverse effects that can arise from any radical treatment and gives you time to learn the pros and cons of various treatments. However, with AS it is most important that a man is closely monitored as there is a small risk that the full extent of PCa was not found with biopsy and MRI or the cancer may develop and become more aggressive. Most men with PCa who have treatment with either surgery or a form of radiation seem to come through it OK albeit with various and varying side effects which can be short term or longer.

A good place to get an understanding of PCa and treatment is to download or obtain a hard copy the 'Toolkit' from the publications section of this charity.

17mm seems to me to be quite a large tumour and this might preclude certain focal treatments which might otherwise be options, although these are generally but not necessarily only available for private patients or within a NHS trial.
Barry
User
Posted 16 Jul 2018 at 08:29

Did you have a TRUS or template biopsy?


I was Gleason 4+3=7, T2a with a 15mm tumour and was keen to go on active surveillance, but was told by two consultants in no uncertain terms that that would not be wise. 4+3 is more risky than 3+4. I would go with AS for a while.


I had a prostatectomy six weeks ago today and am completely recovered, except that there seems to be around 2” missing from my penis (some men do exaggerate about penis size) and no sign of life down there yet, despite a daily dose of Cialis.


My PSA is now undetectable. No regrets.

Edited by member 16 Jul 2018 at 19:08  | Reason: Not specified

User
Posted 16 Jul 2018 at 08:55

Hello Martin and welcome


Having just been diagnosed and advised that AS is a definite option for you (especially as they say for 2-3 years) I think you are wise to opt to not rush into drastic action.


My husband was also a 3+4 and opted for AS and was on it for a year before he made the decision for permanent seed brachytherapy which he has never regretted.


He was signed off from the hospital at the beginning of this month, into the care of his GP and will now be monitored yearly. IF his PSA creeps up to 4.0 then they will review the situation.


He is 78 this year and had the seeds implanted about four years ago.


He was adamant from the start that he did not want an operation with all its possible side effects.


He has been one of the lucky ones as far as side effects of Brachytherapy are concerned in so far as he has had very little in the way of permanent side effects and the initial ones that went with installation were bearable.



ED is a problem but then he is 77 so not unexpected at his age, and Sildenafil makes a difference when we want to use it.


Good luck in your choice. Just do your research carefully.


What nobody can tell you, or predict for you, is how you and your body will react with any treatment choice. Many men sail through their choice. Others, on exactly the same path have not been so lucky. There is no hard and fast rule.


Who knows, AS for 2-3 years gives an opportunity for newer treatments to be made available that you could then take advantage of.


 

Edited by member 16 Jul 2018 at 08:57  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 16 Jul 2018 at 15:48
I would just write down a list of pros and cons of each option it's a lot easier when it all written down . The MAJOR pros and cons then become clear, and this helps you.
For instance, the thought of being incontinent would be a major issue for me, even for a few weeks. Surgery gives by far the greatest risk of this, so that was OUT!!
I wanted it sorted so I wasn't left worrying/wondering "how fast is it spreading?"
Radiotherapy didn't have any of these issues (or had far less), so that's what I went for.
It's very much a personal decision, based on how we see the world re. risks.
User
Posted 17 Jul 2018 at 10:03
Hi Martin
I was diagnosed in autumn 2012, G6 (3+3), PSA 3.9

So I have now been on AS for almost 6 years, I've had 3 TRUS biopsies and 6 MRIs, my PSA fluctuates and last test was 5.6, the highest so far was 8.1.

The only problems I have encountered have been with appointments being rearranged due to too much demand for limited resources. I have been able to sort this out, and have always got the required monitoring.

I think it is essential to have complete confidence in your consultant and specialist nurses, and to be proactive to ensure that you get the correct level of monitoring.

A few years ago I suggested to my consultant that AS might continue for the rest of my life ( 20+ years I hope ), but was told to expect to need more treatment at some time.

Alan
User
Posted 17 Jul 2018 at 16:25

Dear Martin 


I have just joined and seen your post - I got a surprise yesterday because I had signed up to a genetic research programme because I didn’t have cancer (whereas my brother does - 3+3=6, on AS) only to discover following a biopsy that I have cancer after all!  


My Gleason is 3+4=7 but my PSA is lower than yours.  I have just started investigating options, including HIFU.  The clinicians say options open to me include AS and radical prostatectomy, with a ‘very slIght’ preference for surgery as I am relatively young (65) and likely to recover well.  


I would be very interested to learn about your experience and decision - and happy to share mine - so please keep this conversation alive.


Best wishes


peter

User
Posted 17 Jul 2018 at 17:08
Hi Peter,

Gleason 3+4=7 is borderline for active surveillance, but I would encourage you to go with it as long as you and your clinicians feel comfortable with it.

Make sure you have mpMRI 3T resolution scans and template biopsies though!

Cheers, John.
User
Posted 17 Jul 2018 at 23:17

Noted - thanks John


best wishes


peter

User
Posted 16 Aug 2018 at 15:23

Hi to all. I also have very recently been diagnosed, Gleason 8 but low PSA 5.5, 9 months ago it was 3.3, hence the full diagnostics, I've only been offered surgery or radiotherapy, I've decided on surgery because of the damage the RT can do so limiting the option of surgery if RT doesn't work, this was all explained by the wonderful Macmillan Nurse I saw to get my results of the biopsy, also by one of the two surgeons who will do the surgery, for me it was a simple choice! Maybe only having two choices made it easier? 

 
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