Second opinion commenced

Hi Beard

Yes, I got hold of all my MRI copies at a minimal cost, there is a department that deal with copies of scans , can't remember the name of it but if u phone the hospital they should be able to put u thru.

Not sure about surgery if in a node and probably brachy is Def out.

I would have thought Radiotherapy and HT your best bet but hopefully u are already on HT.

Best wishes 

Steve 

Thanks Grundo / Steve,

the PET scan was clear, the Surgeon recommended removing the lymph nodes as a precaution. Not on any medication currently.

I will call the hospital tomorrow and track down that department, many thanks for your help

best wishes 

I think I remember you from before, node removal as a precaution.

Is the tumour near to the gland edge and do u have the  tumour size in mm.

When U go ahead with treatment are u staying private, I assume so .

Steve 

Hi- in relation to sharing of scans etc we didn’t have any issues with nhs to private. The info is yours and if they won’t share just do a subject access request for all notes, scans, results etc. Where we ran into problems was about the NHS following up post op- PSA tests - our nurse specialist basically told us it would be problematic to come back in- how true that is I don’t know as OH was basically pushed into the HT chemo and RT route based on suspicion of Mets and possibly Gleason 9. Neither of which has been clarified. 
Another point which we found from the ombudsman report was that once we sought a private opinion & biopsy, his treaty window clock was stopped. No one told us this and only found out from the report. Unfortunately we are in wales which works very differently. Best Wishes 

I don’t know the size or position to be honest, but that could be a factor. I think it would depend upon the cost if I stayed private as I don’t have medical insurance. It was really to provide peace of mind that I had considered all possible treatments before making a decision.

Ok, well it could be worth finding out a bit more about the MRI, sizing and positioning.

If well contained in the gland then surgery or RT

both suitable.

Not sure about removing nodes if nothing shows though.

Gleeson 8 aggressive but not as bad as a 9/10.

Best wishes 

Steve 

You’re doing the right thing. You only get one life.  Keep the 2-3 month to prostatectomy clock ticking, meanwhile get the second opinion.  You can still go ahead with surgery if the appointment comes up, or you can cancel the appointment if the second opinion points to RT plus HT.  Brachytherapy as a mono therapy is very unlikely, but brachytherapy added to RT / HT is likely to be a powerful combination with curative intent.  That last point is certainly one to be asked at your private consultation.  Keep us informed.  Right, I’m off out now to climb a big mountain to escape the heat!    AW

Hi Beard 

Sorry to hear that you’re in this uncertain position. 

See my profile which gives details on my hubby’s situation.  It isn’t a million miles away from yours - very similar PSA.  Gleason is 7 (4+3) but as he has 75-90% Gleason 4 in both sides of the prostate, he’s not far off an 8. 

It seems as if different hospital trusts have different approaches.  Ours recommended that HT and RT were likely to be more successful for him than prostatectomy ie the risk of recurrence would be less.  Brachytherapy boost (HDR) was mentioned as a possibility at the post biopsy meeting. Based on information and encouragement from this forum, hubby expressed interest in pursuing brachytherapy and was referred to the oncologist consultant with a special interest in the field.  So HDR brachytherapy followed by 15 sessions of radiotherapy is his recommended treatment, which will begin in August, 3 months after he started HT.  I guess it may have helped that our hospital trust can offer brachytherapy. 

We don’t see how your Gleason 8 is prohibiting brachytherapy if your cancer is considered localised?  See the NICE guidelines - 

‘NICE guidance recommends High Dose Rate (HDR) brachytherapy in combination with External Beam Radiotherapy (EBRT) for intermediate- and high-risk localized prostate cancer’

But maybe we’re missing something here. 

Incidentally, hubby discussed with the oncologist what further treatment would be possible if there was recurrence further down the line. She gave various options, one of which was prostate removal. She said this wasn’t often done and would have to be done in London (we’re in Norfolk), but it is possible. 

I hope this information is helpful.  All the best with your fact finding and future decisions. 

Hello Hopingforthebest 

Thank you for taking the time to reply - a brilliant post.

Best wishes - Brian.

Hi Hanandy,

many thanks for the information, I did wonder if getting a second opinion from a private clinic would have any ramifications, so I will check with my hospital. I am likely to proceed with the NHS for treatment because of cost so I don’t want to delay that.  I will (if I can ever get through) see about speaking with the oncology team at my current hospital to see why it hasn’t been offered, they do provide it. 

thanks once again and good luck on your journey