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Shocked 52 year old with Gleeson 9

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User

Posted 07 Feb 2017 at 13:27

Hi Tony,

The"high risk" and "high grade" relates to the Gleason Grade of G9. Here's some further information from Cancer UK...

http://www.cancerresearchuk.org/about-cancer/prostate-cancer/stages/localised-prostate-cancer

The back, neck and foot ache is unlikely to be related to PCA considering your low PSA score. I'd make an appointment to discuss these with your GP.

Flexi

User

Posted 07 Feb 2017 at 14:10

Thanks Flexi really appreciate the response - this forums a massive lift when you are in no-mans land waiting for the Bone & MRI scans.

User

Posted 07 Feb 2017 at 14:28

Hi Tony I'm presuming that you haven't started on any meds yet ? My OH gets muscle aches and tenderness in the Achilles but that is because of the hormone injection and tablets ,it's almost as if all his old injuries are being targeted , it could be referred pain due to tension .
Good luck with results
Debby

User

Posted 18 Feb 2017 at 04:15

Hi Mate,

Hope your keeping well considering?

Just had the all clear on the bone scans which is good news - have you progressed that far yet?

MRI next week then another long wait until the 02nd of March for results which seems crazy to me.

If I hadnt rang hospital yesterday then I would also be waiting for bone scan results until the 02nd.

Tony.

User

Posted 18 Feb 2017 at 12:11

Great news on the bones, something to celebrate. Sadly, waiting is something we all have to get used to on the Prostate cancer bus, for you it's a scan and then result then it will be PSA tests regularly to see how the cancer is behaving on whatever treatment reigeme you are on. I am not trying to depress you but help in a small way that this is the new norm. I have a bone scan and PSA result meeting 1st March but I have realised over these last two years that worrying about it too much before is a waste of life (that said it is natural to worry a day or so before still). You can't change the results now but there will be things you can change in your life to make it better so do those things instead.

How are your back pains since biopsy, hopefully they have gone away now? Thats one "test" we won't need again, rejoice!

Enjoy the weekend

Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User

Posted 02 Mar 2017 at 01:50

Well its 1.48am and I am up again researching my options ref treatment - I have trawled the net for the last two weeks but obviously wasting my time until I know where I stand ref the MDT meeting and definitive prognosis.

Its been like Christmas eve today and I am finally going to know whats ahead of me today at 11.00am.

I have been running all the scenarios through my head and the best outcome I suppose I can hope for with a Gleason 9 is the chance of having an RP - The more I read up however the more the sound of Brachytherapy appeals to me with all the new advancements. I understand this is dicated by the Cancer still being retained in the capsule, so again its all pie in the sky as I wont know until later today?

One question I have for anyone who may be able to help? I also have the dilema of qualifying for comprehensive private medical health care through my work. This something I have never really given thought to until they contacted me and told me last week. I have been asked by the insurers to contact them when I have a clear treatment plan, but I am torn as to what to do. My thoughts being that if the insurance only gives me a private room with a TV then why bother, although I understand there can be benefits with treatment.

I am currently under a Urology Prof at the Freeman Hospital in Newcastle, who is actually registered with my insurers which makes the question of NHS & Private a wierd one. Dont get me wrong I am your typical working class citizen and certainly pro NHS but when it comes down to it and hearing the word CANCER then I want to make sure I go down the right road.

Can anyone guide me on the above or perhaps comment on their own experiences before I am faced with making a decision?

Will post todays outcome later (fingers crossed).

User

Posted 02 Mar 2017 at 07:10

Hi Tony
Best wishes for today. It's tough to make a decision. In hindsight Bracchy HT and RT may have worked better than my op which wasn't a success. Truth is , I didn't want anyone doing anything down there. Yes I'm alive two years on , but they've probably been the worst two years of my life with more to come. I love the NHS. I've heard many a horror story but I have been treated amazingly. But if you have to stay in hospital , being on a ward is the last place in the world you want to be to recover. Noisy , unclean , risk of infection etc etc. But you have to be safer in a hospital with all the professionals at hand ?? I had a private op on my arms many years ago and it was frightful care , so much so I reported it back to Bupa.
Good luck

If life gives you lemons , then make lemonade

User

Posted 02 Mar 2017 at 07:22

Thanks mate appreciated - we have another thing in common "whippets" just bought a puppy similar to the one in your profile LOL.

User

Posted 02 Mar 2017 at 07:28

With regard to the decision on using the comprehensive private medical insurance, I'd go private because:

1. It saves the NHS money.

2. Providing it really is comprehensive, your uro/onco will be able to proceed with whatever treatment they believe is best for you and not be subject to NICE guidance or local funding constraints.

User

Posted 02 Mar 2017 at 07:43

Hi Tony194
I know how you are feeling, it is all so surreal, it's when they say those words that everything else including logic disappear, on here you will get all the support and help you need.
This forum has been invaluable to aiding and allowing me to understand what was happening to me.
I wrote an article about my whole experience from my first routing blood test to my actual RP, and although I am currently undergoing Radiation treatment (completed 31 out of 36 sessions) I still find comfort and help from these wonderful people here.
Although my experiences have been over here where I live in Spain which made it harder for me due to the language difficulties hence finding this forum, but if you are interested I can send you my article as it does give a guidance to what happens to your mental ability to absorb news when doctors give you news in their terminology.
Good luck to you and I am sure you will make a complete recover.
regards
Tony

User

Posted 02 Mar 2017 at 08:05

We went private (self funding) for the RP for only one reason - we wanted the same urologist that was already caring for my mother-in-law and father-in-law and who had done my dad's nerve-sparing RP many years before when it was still experimental but we couldn't get on his books via the NHS. The upside of going private ... nice room, op done on the first available date, we always see the consultant rather than a succession of different housemen who don't know the case, and no 2 hour waits in an overstretched clinic. The down side ... it is difficult to get back into the NHS system to get aftercare so unlike some here, no district nurse support or physio etc and it was a battle to get the referral to our local ED service. Also, no access to a urology nurse specialist or named person which other members here seem to find a great source of support. Each PSA test costs around £100 but presumably your insurers would pay that?

When the cancer came back a couple of years later we saw the oncologist privately (self funded) and he was happy to do the RT on the NHS but we pay for private consultations to review how it is going. Still no access to a nurse specialist though.

I think much depends on what happens today - your nearby private hospital may be great for surgery but not equipped for RT, or your consultant may know that if you have the treatment privately your CCG will not pay for aftercare, or he might say we'll have it done on the NHS but use the insurance for private consultations rather than come to clinic.

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

User

Posted 02 Mar 2017 at 08:12

Happy, I would be pleased to read your article.

In case members on here were not interested in it, would you be so kind to send it to my inbox?

User

Posted 02 Mar 2017 at 08:44

Thanks

I have private medical insurance. Try getting back into a private hospital on a Saturday morning when you are in retention, where do you finish up ? In the NHS Hospitial. It does help if your private consultant also works at the NHS Hospitial. My hospital has a Urology ward so most of the nurses are very experienced with urology issues.

As already said the NHS support network is there. In my hospital we have a direct line to someone in Urology 24/7.

Thanks Chris

User

Posted 02 Mar 2017 at 10:16

We have been treated privately from the beginning as my husband was diagnosed privately. My OH had a robotic RP also done privately.
We have found that in our area there is a lot of crossover between the private and NHS care. So the OP was done on a Saturday by two top consultants (which for me was the biggest benefit) but it was carried out in the NHS hospital where both consultants are based. He was looked after on an NHS ward albeit he got a side room to himself but had the NHS needed that bed for infection control he would have been on the ward with everyone else.
We also got hit by the bed crisis and op was delayed a couple of weeks. If it had been NHS it could have been more as surgical lists were cancelled for over a week at one point.
There is no private equivalent of an MDT but in our case the private patients are discussed in the NHS meeting.
As Lyn said you do not get a dedicated nursing team and this sometimes has left us feeling a bit isolated.
All of the emergency numbers we were given after the OP were for NHS services so when we had catheter issues we spoke to an NHS urology nurse.
We have already spoken to our GP and she doesn't see an issue with transferring back to the NHS after our 6 week check up. We will make a decision on that when we know if and what follow up is required.
Finally your cover is only good whilst you remain insured by the same provider so if you change jobs or leave work you will no longer have cover because the new provider will see it as a pre-existing condition.
Good luck whatever you choose.

Edited by member 02 Mar 2017 at 10:17 | Reason: Not specified

User

Posted 02 Mar 2017 at 12:09

Tony,

Some very good responses above regarding private or NHS.

I think Lyn's comments are very useful as usual and show up both sides of the argument very well

As for myself, all my treatments have been private and I have no complaints at all about my treatment so far and everything has been dealt with efficiently, although I am sure most people going through the NHS say the same.

Furthermore going private saves the NHS money.

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"

User

Posted 02 Mar 2017 at 19:32

..... and here are todays scores on the doors after consultation.

Bit of a wierd one really, as was told that bone scans were clear again and that the MRI did not show clearly the PC that had been identified in my biopsy. The MDT team were completely baffled by the lack of show, so they requested that the pathologists report was revisited. The gleason 9 rating was again confirmed and today I was told that the cancer is aggressive and very high risk for a man of my age 51. In summary no real surprises other than they have advised that I go with Radical Prostatectomy Robotic De Vinci - the down side being that all my Cancer is located on one side, so Prof said he would have to "dig deep" on one side and defo lose nerves and surrounding tissues. Understand the opposite side will survive somewhat?

I am confused a little, as if the cancer is contained in the prostrate which was confirmed - then why remove tissue beyond the prostrate on one side. I was also told that the Gleason 9 rating meant that Brachytherapy was not an option.

I did ask the Urologist/Prof his opinion on the Private vs NHS dilema I have and he quickly said I would be wasting my time. This as the clinic would supply no additional benefits, even though they are all registered in name with my insurers. So jury still out on this one.

Although I had a decent meeting today, the only thing I didnt get was my staging (assuming this will be T1 or T2) or could it be that they are holding this back if the MRI did not clearly show the PC as they had expected?

A great deal to digest but would appreciate any relevent comments on summary above - BTW booked to have the RP on the 03rd of April so any advice also welcome ref the comments above.

Thanks All !

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