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Awaiting some good news

User
Posted 07 Aug 2018 at 21:44

Had my biopsy results. Total of 12 biopsies taken. Six positive on one side and four positive on the other. Gleeson score of six ( 30% cancerous ) and last PSA test was in March ( 3.0 ) a rise of .8 since last year. The reason for annual PSA is that my Father died of cancer at the age of 62 from prostate related cancer, consultant reckons that he had undiagnosed prostate cancer in his early 50's and later spread to his bones at the latter stage still undiagnosed until too late.


Just waiting for my MRI results to be discussed at the MDT for a course of action but have been told that a prostatectomy is more than likely so I am considering robotic DaVinci surgery at either Christies or Liverpool, I'm lucky to have Bupa.


Bit of a worrying time for everyone as every stomach ache or back pain the mind works overtime and thinks the worst.


Hopefully with my age, Gleeson score and PSA figure I will receive positive news.

User
Posted 07 Aug 2018 at 22:50
If you are likely to go ahead with private surgery, ask a few questions first including:-
- will you have access to a clinical nurse specialist for support
- will you be able to access incontinence and / or ED services on the NHS if needed or will that be dependant on your GP
- will your future PSA tests be arranged by the surgeon and done privately or will you be handed back to your GP for all future testing

My OH had the op privately (but without private health insurance so self-funding) and only realised too late that this meant no specialist nurse allocated. We also had to fight for referral to ED services and had none of the district nurse support that others on here have talked about. That is how it works in our region, it may be different where you live. There was a member on here who had his op privately in another city and never saw his surgeon again after he was wheeled into theatre - no follow up, he never even got an appointment for the pathology results ... it would have been manageable except his GP refused to provide any aftercare out of his budget so the guy was left high and dry.

Despite the lack of support services, going private worked out well for OH and it was worth every penny to have the urologist that was already caring for my dad, father-in-law and mother-in-law - we had absolute trust in him so it would have been barmy not to do it.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 08 Aug 2018 at 06:43

I always worry about Bupa for prostate cancer. That's because I don't know what alternatives to surgery are available, and it might be that surgery is hobson's choice. Is radiotherapy available etc? 


The nhs have all options at their fingertips, a huge amount of experience, plus ,as Lynn mentioned, all the various support services for aftercare if things go slightly awry, or even if they go right.


BUPA are great for elective problems, but I would encourage you to examine the nhs who, for prostate cancer,  have been amazing for me.

User
Posted 08 Aug 2018 at 07:36
I’ve had all my consultations and tests privately, but I’m going to get myself transferred to the NHS for treatment. As has already been said, it’s the aftercare and follow-ups that can be the issue with private treatment. Plus, in my case, my private medical insurance comes via my employer, and I plan to retire in the next couple of years, so I’ll lose that. In my own case, the urologist and oncologist I’ve seen privately are the same ones who would have been in charge of my case on the NHS, so switching to the NHS is straightforward. It’s worth noting that it doesn’t have to be an “all or nothing” situation with private healthcare. My own insurers (WPA) are happy for me to have NHS treatment, but still fund private consultations, which is really the best of both worlds.

Chris
User
Posted 08 Aug 2018 at 08:14

Very amiss of me not to wish you good luck during my reply, the results you have so far are very encouraging. You have lots of reasons to be optimistic.

User
Posted 08 Aug 2018 at 09:54

Good luck JMW.


On the subject of private health insurance, I was with Saga(AXA/PPP) for only a year before i was diagnosed with PC. Prior to that I hadn't bothered with health insurance as i always thought stuff would never happen to me. My view changed after i had some heart problems, and coughed up for private treatment. I have to say Saga were excellent, allocating an individual to me who even from time to time would call for a chat post-op, just to see how i was doing. They also agreed to pay for a second opinion, plus sent a cheque for £100 to cover incidental expenses, such as transportation to and from the hospital. I still see the surgeon at The London Clinic for my follow up PSA tests, and the only thing not covered by Saga was ED support.


 


David

User
Posted 23 Sep 2018 at 17:06

Unfortunately my wife passed away on the 22nd of August, I'm devastated by her loss. She was going to be my nurse during my recovery .


I'm having robotic surgery on the 9th October in Broadgreen carried out by my surgeon from Glan Clwyd. I have a wonderful son and daughter and mother in law and sister in law, but there not my wife. I'm being selfish in being worried about incontinence and ED, it's all too much for me at the moment to care if I pull through the op but if I have my wife's strength I will come out the other side. My MRI shows a T2CN0MX and a Gleeson of 6.

Edited by member 23 Sep 2018 at 17:10  | Reason: Not specified

User
Posted 23 Sep 2018 at 17:40

Sorry to hear about your wife...  Good luck with the surgery...  

User
Posted 23 Sep 2018 at 19:38
Good Luck with your choices.

I recommend using your BUPA right to a second opinion before doing anything radical with a Gleason 6.

We felt that maybe my husbands BUPA coverage looked like a blank cheque to the surgeon who immediately recommended a RP for a G6 before we had seen an oncologist to discuss brachi or an AS advocate.

There has been a reported over treatment of G6 diagnosis and the book ‘ the invasion of the prostate snatchers’ was an interesting read during our decision making time.

It must be really hard not having your wife to support you through this but just make sure you are fully informed before you make a final decision.

Good Luck

Clare
 
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