Waiting for biopsy….

Hi AW

Yes it's a shame u can't start HT to keep it at bay.

From your previous post I think u are opting for surgery, don't think they normally give HT with that, not sure why and I could be wrong.

Would  you consider HT and RT or do you have your mind set on surgery?

You could go privately for biopsy but not sure about then going back to NHS with the results. You'd have to say , OK I have biopsy results, when can I see you.

You probably won't save that much time because complicates the situation.

See what others say

Regards

Steve 

Thanks Steve, 

I haven’t decided on RP or HT/RT route yet (ooo- look at me with the abbreviations )

anyway, there seems to be some confusion on the MRI whether I’m T2b or T3a, as they can see a 15mm lesion on the capsule but they’re not sure if it’s broken through the outer layer yet.  That’s why the diagnosis had the word “early “ in front of T3a.…. And that’s why I’m SO keen to get on with things as I have more confidence if the little buggers !(as Millibob would say!) are still contained within the capsule.  
if so, I guess any microscopic escape could be monitored on PSA and then RT done to mop up? 

Ok well good if still T2.

Just bear in mind that if about to break thru or has just broken thru arguably u could be better off with HT and RT 

Perhaps better at mopping up any stray cells.

By the way testosterone, apparently likes cholesterol so keep an eye on diet, meat dairy etc.

Good luck

Steve 

Not sure if this will help but this is what we did. Husband had MRI scan via NHS. We were then given an NHS appointment but this was going to be about 4 weeks for the results so we decided to see the same doctor but privately and saw him 2 weeks later. At that appointment he said he wanted a pet scan but only 2 hospitals in the country did the scan privately and it wouldn't have been any quicker private than the NHS. Not sure how it works if you go private and then how your NHS doctor sees the results I guess you could ask this question. It was easy for us because as I said it was the same doctor and at the private hospital he logged onto the NHS website and could see the results. This is our dates 24 April MRI scan, 18 may biopsy, 24 may bone scan,  8 June saw doctor private, 20 June pet scan, 4 August first chemo. Things didn't happen quickly enough for me and I felt I was constantly on the phone checking. I was told your husband us not the only one. I appreciate that but he is to me and it didn't deter me. Keep chasing and say you will take a same day cancellation. Good luck

Hello AW

i don’t know which hospital trust you attend but I can tell you what worked for us in getting the biopsy sooner rather than later and hope it helps! 

first we explored the private route and were told we would have to go through another initial consultation even though it would be with a consultant from the same trust ( extra cost!) Then the biopsy would go ahead but the whole time would actually E longer than the NHS would take!

by this time we had had such a torrid time with appointment delays and the way my husband was being treated that we made a formal complaint via our hospital PILS ( elsewhere called PALS) service 

we alo reminded urology that the Government target fro Referral to Treatment time ( RTT) for cancer patient is 62 days. This is the time from the day your GP refers you with a suspicion of cancer to the day you have your first treatment. A lot of trusts are failing to meet this target but it is worth reminding them!

Thren we told urology that we were able and prepared to take a last minute ( short notice) cancelled appointment. 

suffice it to say, my husband got his biopsy within a few days! We then requested they rang through the results as soon as they were known rather than wait for weeks. This was done!

my husband had to then have a bone scan and we followed the same procedure but did not make another formal complaint! Again we got a cancelled appointment and this was all done quickly.

I think the message is that you have to politely but firmly be proactive and use the right channels. Also, I kept a diary and noted the name, contact details and content of every interaction we had with the hospital. Then I was able to pick up the phone to try to push things along! Our overall impression is that it is hospital admin that puts spanner’s in the work. By having names you are ensuring that the people you speak to have to take on some accountability and you can speak ( hopefully) to the same person at least twice before they quit, go off sick or go on holiday!

finally you ask about diet. I’m not someone who has a lot of trust in varying foods killing off cancer cells but I have heard talk of pomegranate juice being good and I think elsewhere I’ve heard that tomatoes lower the PSA. I have no evidence or faith in such but others do. You might like to seek out your own evidence?

hope this helps!

Hello AW my husband wasxt3a. Like you, his MRI scan was inconclusive as they were not sure whether the cancer was making the wall bulge or whether it had broken through. There were no cancerous cells picked up outside of the prostate. However , on querying the grading, we were told that it’s standard procedure to treat at the higher indicated grade just ‘to be sure’. We accepted this as probably the safest route! We wanted to do everything possible to cure.

Great advise. I also got e mail addresses and backed every verbal conversation with an e mail saying for eg further to our conversation on (date) at (time) where you agreed to *****. I found this way I always got a reply and fast 

Hi Alpine Wanderer

Just a quick one. My dedicated urology nurse said "Brian - he who shouts loudest in the NHS gets what they want". I got on with her really well and after a few seconds shouted down the telephone "***** (name removed for political correctness!) I want this appointment - I need the TURP operation - I've been waiting 9 months". "OK" she said and booking and scheduling rang me a few minuets later with a date!!

Keep at them (don't shout too loud - be nice) and it may just happen.

Best wishes

Brian.

Hi all,

I haven’t replied for a few days because I’ve been busy chasing PALS, Urology, PAs to consultants etc (very politely of course). Mrs AW has been so supportive bless her .  I REALLY appreciate your detailed replies!  I’m on an NHS waiting list for trans biopsy - told it could be 6 weeks, so I’m on the cancellation list (with regular phone calls from me, reminding them I’m priority 1a and willing to travel to be there within an hour).   I have paid for a consultation at Spire hospital locally ((Professor Mahood Khan, who has excellent credentials and reviews) - I managed to book what I think may be a cancellation, as the next appointment after mine is mid September. If nothing from NHS, I will go private for biopsy (if I can get one short notice) - I have his PA email, so I have already asked for biopsy dates availability ahead of consultation! (After apologies for pre-judging what he might advise, based upon NHS MDT recommendation for trans p biopsy). 
I feel that I have “some” degree of control by pushing hard to progress - if I had been diagnosed MRI T2a I would have been much less pushy: in my case I feel it’s a race against time to make sure e “little buggers don’t go walkabout” ( thanks Millibob ).

It looks like your OH has a case and timeframe very similar to mine.  I will be very interested to track your progress (and no, it’s not a race )