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Prostate cancer

A support group for anyone affected by prostate cancer to come together, share experiences, and ask questions.

Gleason 4+4=8 and NANOKNIFE / IRE

springchicken
Posted by

Hi all

I'm interested in hearing from anyone who's chosen IRE/Nanoknife with a Gleason 8 diagnosis.


I believe Prof. Stehling in Offenbach is the only one who offers it and my consultant surgeon in Dublin thinks it's beyond the bounds of being a reasonable choice (he's not against IRE in less aggressive cases).


I'm booked to travel on June 11th.


Thanks for any input.



Cillian

Grundo
Posted by

Hi Springchick

From what I have read about nanknife its ideal for the more difficult tumors and higher Gleeson, perhaps your chap is trying to put u off because he is losing business.

But there is not much in the way of stats about success rates. At least with radiotherapy its tried and tested. But I am sure that Nanoknife had worked on some people, it would just be good to get to talk with 1 of them.

regards

Steve

billythewizz
Posted by

Hi Cillian,

I had a 4+4 and was treated by Proff. Emberton at Princess Grace hospital here in London 2 years ago. It hurt like hell for a day and there were complications with the water works, I had to self catheter for about 2 weeks.

The treatment looked successful initially though but t's now come back as 4+5. (still confined to the capsule though)

Nevertheless it bought me 2 years of erectile life and I'd like to try it again but Proff.Emberton now says it's too close to the sphincter for further treatment and recommends Prostatectomy.

So I went to see Proff Stehling in Offenbach a couple of days ago and he says it's no problem he can treat it with IRE and adjuvant Chemo.

I found Proff. Stehling to be really knowledgable  and the chemo makes a lot of sense to me so I'm tempted but have niggling doubts mostly about the facility there, it's in a commercial building with no visible support in the event of complications.

Proff Stehling say it's painless and doesn't understand why I had the complications before - there will be no complications !!!!!!!!

So I'm a bit puzzled?? What did you think of the set up?

I can find lots of good PR on Proff Stehling but haven't found anyone yet who has been treated by him (if anyones reading this who can provide any info here I'd be obliged)

Anyway good luck mate, stay in touch and let me know how it goes-I'll do the same

Billy
springchicken
Posted by

Hi Billythewizz

I had the op' two weeks ago tomorrow, and tomorrow is when the catheter comes out. They recommend leaving it in for 14 days to allow all internal swelling to reduce, which should allow the bladder to resume normal function. Any earlier removal might be too soon. No-one wants to have the catheter re-inserted, without anaesthetic!

In due course I'll post a more complete account of my operation and overall experience, for the benefit of anyone looking to learn more about the process at this cancer stage. I found the support from others on here very useful in various ways at various stages of my own process.

tbh, the lack of on site support in the German clinic had not really occurred to me. Perhaps that's because I was so focused on how non-surgical the whole procedure is - i.e. very little blood loss. They have a lot of space in that building, on a few floors, so maybe there is an emergency room - but probably not! Charlotte Hohn will answer that one for you. I've certainly been in an impressive MRI scanner room.

I had the IRE with chemo, they call it iR-ECT - low dose, single shot, simultaneous with operation/procedure. (IR-ECT is a bit of a strange acronym to choose, given the side effect we're all worrying about ...!) I'm not feeling any symptoms relating to the chemo drug. I've almost no pain relating to the procedure - except when sitting bolt upright on a hard chair. The only discomfort is the catheter - my first time having this pleasure. Pretty awful for the first twelve hours, and entirely bearable with increasing ease after that. But I won't be sad to wave it goodbye.

I like Prof Stehling. By the time of the operation I had had three significant chats with him. He was generous with his time, frank - I felt - about the shortcomings of his treatment and open to any question I threw at him (I threw plenty).

So far, everything has gone exactly as he and his colleagues have anticipated, if not better. They seem to know this subject backwards.

Sorry, by the way, to hear your about your repeat diagnosis. How did it come back so aggressively, presuming you were monitoring PSA levels every three months?

Good luck! stay in touch.

billythewizz
Posted by

Great News!!! 

Well done ! I'm pleased its gone well mate. Will you be taking the catheter out yourself?

The answer to your ultimate question I guess is that some cells must have been left behind!

But post op MRI looked good, no signals, PSA down to .79 and Proff Emberton was confident he'd got it. But the PSA started to rise (it got up to 3.1) and an MRI in June '17 showed a small signal but a biopsy proved negative ( The proff missed the important bit) so we thought it was just inflammation. The PSA then proceeded to double in 6 months and in May '18  had got to 7.58. Subsequent MRI's and a PSMA showed a 7mm tumour with a Gleason of 8+5.

I'm hopeful that Proff Stehlings method with the Bleomychin (Chemo) will pick up any residual cells, do yo know anything about it efficacy?

Stay lucky and keep me posted!

Billy
billythewizz
Posted by

Hi Spring Chicken,

How are you? how did it go with the catheter, did you take it out yourself? 

Cheers

Let me know your progress please

Billy
springchicken
Posted by

Hi Billy

I'm in great shape! 

Catheter came out in the GP surgery. Easy, no pain. Bladder working fine, but still a sense of urgency. Potency returned early but not what it was, unsurprisingly. Serves its purpose! However, that's improving each week, I think. 

Return to Germany in seven weeks for MRI and first PSA count ...

Good luck!

Cillian

billythewizz
Posted by

Well done Cillian, long may it last mate, Keep me up to date please.

I’m booked for 22nd, did you have the endorectal MRI or just the ordinary one?

Billy
springchicken
Posted by

Endorectal.

Good luck with your op.

billythewizz
Posted by

Well done Cillian, long may it last mate, Keep me up to date please.

I’m booked for 22nd, did you have the endorectal MRI or just the ordinary one?

Billy
billythewizz
Posted by

Thanks mate,

sorry you got my last post twice, I didn't see it come up so thought I'd forgotten to press the post button,

Was the endo-rectal grim or did you manage OK?

Billy
springchicken
Posted by

Twelve months ago I might have thought it grim, but after a year of investigations and probes, it was just another one. The staff are very capable and friendly, odd as the circumstances may be. Insertion is uncomfortable but not painful, the rest is unremarkable. Don't worry about it, I would say. 

Troc
Posted by

Hello Springchicken

well written

I have Gleason 8 and 9 psa 12

offenbach wants to do the same procedure on me!

can you please tell me how you fared?

all other urologists say I should have radical prostatectomy 

thank you 

billythewizz
Posted by

Sorry to hear it Troc, My advice is don’t go near it mate, I had hellish experience there about a year and a half ago.

The guy left me incontinent and impotent, a year and a half later Psa rising again and mri not looking good.

The worst mistake I ever made was to trust that guy.

Billy
Troc
Posted by

Thank you

trouble is I am running out of options .

if I may ask how high was your Gleason ?

Were you ever able to talk to other patients because some seem satisfied