Sadly joining this group

Not had a bone scan yet, only the MRI which stated no mets on the pelvis. The nurse specialist we saw today said the consultant might book us a bone scan. They didn't say what type it was either, I will ask on Wednesday.  The specialist said we would be offered either prostectomy or radiotherapy.   He also said that it would be unusual for it to have spread with a score like that and his 7.3psa reading.  I'm praying it hasn't.

Thank you

Thanks for your replies.

The type of cancer is adenocarcinoma. It wasn't found in every sample, but not sure how many it was found in, I will have to ask, think they took about 23 samples.

I thought I'd feel better after getting the diagnosis, but it just seems like the goal posts are moved all the time.  From what you guys say, there's no certainty that that the staging etc will stay the same, and then there's the bone scan, which is worrying me, he had a fall in the summer on his shoulder/top of arm and is still having pain from it, says it feels like the bone.  The nurse said yesterday that it's unlikely to be mets, but my mind is on fire!  When I asked the Nurse yesterday if it was contained, he said yes, but it's up against the edge, so the T3A staging is confusing for me, as like you say John T3a means it's broken outside the prostate.

I have ordered the Toolkit today, hopefully this will help to guide us.  I think Pete is probably leaning towards having surgery, I asked about the surgeon, apparently he is very good and does about 3 a week.  He'd been in our trust for the past 5 years.  I will message you about those surgeons later John, thanks.

I know things could have been worse and for that I am very grateful.

Also meant to say that there is prostatitis in the back ground.  Is there a chance that it is this that is seen on the MRI? which could explain the conflicting issues between the biopsy results and the MRI.

I had a biopsy first and was graded T2A. This was upgraded to T3A following MRI . I wonder whether Pete also had his biopsy first and the 23 needles did not find the area of real concern shown in the MRI. Where an MRI is done first the needles can be particularly targeted at the suspicious area(s) .

This of course Barry, is the problem with ‘league tables’ in hospitals, where some places claim their poor morbidity rates for heart surgery are down to the bravery of their surgeons to take on ‘hopeless’ cases.

So I am pleased I ended up with a ‘Goldenballs’ with a PR operation and a private clinic, on the strength of personal recommendations alone, and the Mail article above coincidentally appeared on my iPad whilst in my hospital bed post-op!

I am cured for now, but he still owes me 2”! Funny how that’s never really mentioned, nor are Nomogram prognostications for recurrence, unless you delve into it.

Cheers, John.

Edited by member 13 Nov 2018 at 17:50  | Reason: Not specified

It was easy for us; John’s mum and dad plus my dad were already under the particular urologist so it was a no-brainer that we would pay to have the same guy; we already had a very positive relationship with him and wanted to ‘keep it in the family’ so to speak. It would have been more difficult if we hadn’t the cash needed as the surgeon John was first referred to was dismissive and hadn’t read the notes.

If your surgeon does 3 a week that should be good enough.  I'd be very happy to have him.  Although I would be looking at the British Association of Urological Surgeons website to see what his stats are like.   Not that it would make any difference probably as there are so many differences in cases and I'm not someone who wants to stir up the people I'm looking to save me, especially if he offered a fast date.

Also with regard to the pain, I know only too well such coincidences.  Getting very painful arthritis in my hip during diagnosis and finding a Daily Mail article about a urological surgeon who died of prostate cancer after getting a pain in his hip while on a country walk, just like I did, and saying the hip is where it strikes first.

Not only that but just before the op I must have been worrying and slept in a strange position and woke up with a form of lockjaw that fortunately went after an hour, the only time in my life that's happened, funny looking back. 

The nurse told me not to associate every pain with the illness.  She was right.

The thing was, we had no idea about his success rates, positive margins, % recurrence or any of that. We were paying to have a man that I liked and trusted; no more than that. John didn't have a view and hadn't attended any of the previous appointments with the parents - I did it all. I didn't even know until later that he was on the list of great & good. We paid for a continuing relationship rather than anything technically important. 

Hopeful for you that the potential T3 is just infection and your decision becomes easier as you meet the different specialists and get their informed opinions. 

It is also worth noting that aftercare with private surgery can be very poor - that needs to be taken into account. We had to fight for John to have access to NHS ED support because he hadn't had the op on the NHS; some members here have been left in limbo because their private surgeon will not provide the ongoing monitoring and the GP refuses to pick it up. So don't be downhearted - NHS is often the better option.  

Edited by member 13 Nov 2018 at 22:00  | Reason: Not specified

Nothing is straightforward :-/

Well done Michaela for obtaining a bone scan. It seems to be standard here in Coventry with a PCa diagnosis but as Matron points out, it apparently it is not always the case in other hospital trust areas. It’s shocking to me that there is a post-code lottery regarding many treatments and scans.

It’s supposed to be the National Health Service, not the bloody Local Health Service ‘for Local People’! I personally wouldn’t worry about a few weeks delay to surgery - but then I haven’t worried about my whole PCa thing anyway. But I know you will!

Sounds like the Registrar did utter some magic words equivalent to “With curative intent”, as they tend to put it.

Try and be positive and consider that with luck by next May, Pete could be free of cancer and side effects, and you can hopefully put it all behind you and get on with your lives.

P.S. What is 31/62? Is it some kind of timescale for treatment?

Best of luck with your way forward.

Cheers, John.

Edited by member 14 Nov 2018 at 20:34  | Reason: Not specified

Forgot to add that curative intent was mentioned many many times! 

Thank goodness 

Glad you’re feeling good Dave, I can imagine it’s such a relief to get rid of it.

we would be interested in moving to another hospital if they had a shorter waiting time. Who would I contact to see if this is possible?

thank you

mine didn't work like that lynn,it was my hospital that arranged it for me,I wasn't under any obligation,until they gave me a date,and even then,i was told,that I still remained under my present hospital,in fact,the day I came home after my opertation,my usual hospital,had already sent me appointment for catheter  rempval,and follow up appointment,they appeared to work together,and one was in yorkshire,and the other in Lancashire

After speaking with the appointment clerk Pete's RP is booked for 6/1.  I'm struggling to accept this length of time to wait, petrified of this thing spreading.  The appointment clerk couldn't really help me when I asked her if we could go to another hospital, so I called the Secretary, she wasn't there, so have to call back tomorrow.  Do you think they sort the dates for the op's out by how serious the patients results are?  I ask this because the appointment clerk gave the impression that Pete couldn't be moved forward because there were other people in front of him, which of course is fine and fair, but if some of the other patients haven't got as bad results then it doesn't seem right?  It will be 11 weeks and 3 days since the actual biopsy. and 8 weeks since we were told the results.  So much for the 31/62.

Any thoughts or suggestions are very welcome.

Thank you

Michaela

Hey Luther, thanks for your reply.  I checked out your story and I'm so pleased for you, I'm hoping we can have the same outcome.    

I'm starting to notice how nearly all stages and scores are upgraded after the surgery, so why on earth are these surgeons telling people not to worry, take a holiday, we'll see you in 3 months etc, when most cancers are upgraded?  It just doesn't add up.

it's okay getting  the urgent 2 week referral from the GP, but it's when you hit the hospital all the waiting starts.  Don't get me wrong we love our NHS and the treatment we've had so far has been excellent, it's just the amount of time we spend waiting.

Thanks for your kind wishes,

Michaela

Thank you all for your encouraging replies and understanding the anguish we're both feeling.  So this is what happened..... I called the secretary this morning, explained we'd been given an appointment etc, told her how worried I was, and asked if we could have the operation anywhere else so she said she would speak with the surgeon and then get back to me.  She called back after lunch and said the surgeon had looked at the histology again and said it would be fine to wait until the 6/1.  I thanked her and hung up, only then to think yes the histology said G6 grade 1, but it was the MRI that was the fly in the ointment, indicating a T3a.  So didn't feel much better.  Fast forward a few hours and I receive a call from the appointment clerk, saying they'd had a cancellation and did we want to accept the 10/12.  This is almost 1 month earlier.  I snapped her hand off.  I am now thinking we will have the operation out of the way and hopefully Pete will be starting his recovery in time for Christmas.  Pete is very anxious, as it's a month earlier, but this thing has got to come out, so sooner rather than later for us is best.

Good point francij1, I'm hoping there will be no complications, but if they are that it happens before Christmas

Thanks again to everyone for your advice and sharing your experiences.

Michaela