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Surprise honesty from surgeon

User
Posted 20 Jan 2016 at 16:51

Hi Susan
Many best wishes and fingers crossed for the results. I had this biopsy too and pain very soon passes. Just make sure you have read the toolkit again or spoken to the specialist nurses , so that you understand all the options when they are given.
Good luck
Chris

If life gives you lemons , then make lemonade

User
Posted 20 Jan 2016 at 19:59

Originally Posted by: Online Community Member
He (NHS)advised us that if it is cancer, then he recommends radical prostatectomy which horrified OH so at the moment we are just waiting for results knowing the options and hoping we still get the all clear 🤔
.

Does that surgeon offer any other treatment?  

I have never heard of a surgeon or oncologist or Brachy person recommending any treatment above another, only offering their own specialism. 

Is such a recommendation wise or ethical?  They will not be the one living with the consequences of the treatment.

My GP only told me after I had had my Robotic op that that is what he would have chosen had he been in my position, and what his father had chosen before.  The first surgeon who could only offer open surgery, and therefore did, also told me after my op that if he could have offered robotic surgery, he would have  preferred to offer me that over open surgery.

I know there are some who would like the choice taken out of their hands and be "guided" or "directed" to a treatment, others who scoff at the seemingly over valued advantages of robotic v open surgery.  

Susan, if I were your OH and you, I would make sure that you and OH (we) considered all the options that are open and may be suitable for your OH, some of which may not be offered by your NHS trust?  I had to ask for a referral to a neighbouring trust for my Da Vinci, and the surgeon who could only offer open surgery attended my Da Vinci procedure on his day off to witness me going under the robotic arm or knife. 

Research widely, not too widely, it just confuses things, choose wisely for your character and mindset.

atb

dave

Edited by member 20 Jan 2016 at 20:00  | Reason: Not specified

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 20 Jan 2016 at 22:26

Susan, Dave's advice might be relevant if your other half had been diagnosed and then offered only surgery. In the circumstances, it might be seen as jumping the gun to worry about what you are not being offered before you know whether anything is needed. If the result of the biopsy is positive for cancer then there may be more scans etc and then hopefully a multi-disciplinary team will review the results before you are advised which options are available. If at that point, you are only offered surgery, it would be worth asking which types of surgery are being offered and why other options such as brachy and radiotherapy are not considered viable.

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

User
Posted 21 Jan 2016 at 21:18

Thanks all. NHS consultant said that his verdict as its the only way to ensure cancer is removed totally, but choice is ours, It would be robotic as we are lucky to have a great charity(we now advocate and do prostate cancer awareness for them) who have raised the funds for the equipment and at the end of this month have raise enough money for a tesla3 MRI and the transfusion biopsy technology we have just paid 3.5k for it will be up and running in a few months as NHS have to commission it's use etc.
Private consultant says, he would advise least invasive/best outcome for someone of his age with an expectancy of many years happy life with least consequences but our choice. We've looked at all options so we have questions at the ready- if they are needed.

JUST HAD PHONE CALL FROM CONSULTANTS SECRETARY TO SAY BE HOME 5.30 MONDAY AS HE WILL RING WITH RESULTS.
Less time to fret 😊Will post again after Monday

User
Posted 25 Jan 2016 at 22:47
Cancer confirmed. Gleason 6 3+3. 6 out of 26 cancer cores. All in one location - surgeon suggests at moment active surveillance 3 monthly psa, MRI in 6 months and then review it. Knee jerk reactions would not be best quality of lifeQuite possible he's had it 5 years as would have been missed by trans rectal biopsy. Cancer is probably causing prostatitis as its aggravating it and obviously responsible for fluctuating psa. See NHS consultant on 8 Feb. Not sure how we feel as we have been prepared for this but it's still a kick in the teeth to have the diagnosis and know that we now face decisions !!

User
Posted 25 Jan 2016 at 22:59

Not such good news then Susan, but then not the worst it could have been and at least now you have a starting point.

I'm sure the others will offer their advice as soon as they see your post.

We can't control the winds - but we can adjust our sails
User
Posted 25 Jan 2016 at 23:21

I think in the circumstances this is perhaps better news than you might have had and the breathing space of a few months AS will give you a good sense of what living with PCa might be like - a test of how resilient you both are, how draining it may or may not be to live with the uncertainty, etc. Of course, even if he went for radical treatment you will be living with uncertainty for the rest of his life but some people find AS to be manageable for the short or even medium term.

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

User
Posted 26 Jan 2016 at 09:42
Thank you Lyn,

We feel we are resilient and breathing space is what we need. Obviously, we hoped all clear but in our heads we suspected that the previous biopsies 5 years ago missed what has now been found. For now, we will get on with living our lives and follow AS with a mind that if things change, then we too must change our thoughts. At the moment, best quality of life for as long as possible is our choice but if it threatens his life, and surgery is the option..... Let's worry when we have to and meantime we have thrown ourselves into supporting our local prostate cancer charity and are set to raise awareness locally and have local MP willing to raise screening and better testing in parliament.

"Every day is a beautiful day" 😊

User
Posted 26 Jan 2016 at 10:34

Hi Susan
I was going to post last night and decided not to in the end. Mainly because my view conflicts with a few others obviously , but having gone through all I have been through in the last 18 months I am a firm believer in NOT having further treatment if your consultant actually encourages this. Others insist on the " get it out now " approach . Ultimately it is your own life view and choice. Any of the treatments ultimately change your life one way or another and possibly forever , and in my opinion the longer you can put it off safely the better . My issue stupidly was not listening properly to my consultant which has ended up leaving me in an unfavourable position .
All the best to you both
Chris

If life gives you lemons , then make lemonade

User
Posted 26 Jan 2016 at 10:47

Hi Susan,

At what appears to be T1 staging and G6 it would make sense to me to opt for Active Surveillance for the time being  as has been recommended by your consultant.

Hubby may well be one of the lucky ones and not need radical treatment for years to come , if indeed at all.

Best wishes to you both.

Luther


User
Posted 28 Jan 2016 at 19:16
Thank you Luther,

We hope to be one of the lucky ones! We now have the complete histology report which shows from 24 cores, there is cancer in two cores, high grade pin in 4 all within a very small area. It does mention perineal invasion in one which is a concern as I've read that some research suggests this is more likely to allow cancer to spread and may be a route out of the prostate. ( Anyone have any knowledge on this, I would be interested to hear your opinions)

For now we are just breathing a sigh that it's not worse news and we have time to arm ourselves with info should we have to make decisions In The future. I think the NHS consultant may have a different view to the private one so I will post his comments after we see him on 8th Feb

Best wishes!

Susan

Every day is a beautiful day 😊

User
Posted 08 Feb 2016 at 19:15

Well it seems a long journey so far. We now have decided to take their guidance as it fits in with how we feel. Consultant agrees with Cambridge. Active Surveillance is best course at the moment. Says don't do psa test in 3 months leave it 6 months as what action would you take anyway if it's slightly up, and that could be due to the recent biopsies. It would only serve to worry you. Agrees MRI in 6 months would be sensible but cancer unlikely to have progressed by then as it is VERY SMALL and non aggressive. MRI would show if it has grown not if it is more aggressive in type but they hope by the time he has MRI they will have the technology to do guided biopsy of only the lesion area 6-8 biopsies under local anaesthetic not 26 under general as the recent Cambridge ones. Have appointment with him for 4 months time to arrange MRI for Aug-Sept. Surprised to find out that if brachytherapy is our route, then if cancer returns it makes RP more complicated, we thought that only applied to RT but we will question it again when we next see them.
Thank you all for your interest and support. We are off on holiday in a few weeks, just have the house purchase to finalise....

User
Posted 08 Feb 2016 at 19:49

Hi Susan
You have my total support on this for what my view is worth !! If it's kept an eye on then that's good , and look how many people have the op , then need HT and RT etc anyway. It's life changing having treatment and you STILL worry just as much afterwards. But that's just me and I'm not a role-model haha.
I think any radiation however it is applied affects the prostate so badly it makes RP very difficult afterwards. HDR bracchy is basically radiation planted in the prostate whereas EBRT is radiation applied from outside. So same thing really but I think Bracchy safer as it doesn't zap healthy tissue at the same time , or less anyway.
Holiday !!!! Do you need a guide ?
Chris

If life gives you lemons , then make lemonade

User
Posted 08 Feb 2016 at 20:20

Hello Susan
Well at least both consultants agreed so that was reassuring.
We took the AS route for a year which did give us breathing space.

Good luck with the house purchase. Now go off and enjoy that much needed break away and put the cancer problems on hold for now.

All the best

We can't control the winds - but we can adjust our sails
User
Posted 09 Feb 2016 at 00:17

Hi Susan,
Agree with Chris, Brachy is becoming preferred option for RT where suitable for reason given. However, whether the high dose or seeds are used, external beam can be given where warranted to provide wider cover if required.

Have a great holiday.

Barry
 
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