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Lorraine is a nurse specialist and sex therapist and volunteers here to answer your...
It was gleason 9, I understand how you feel and it’s you’re decision Troc. But if I’d had any idea that I would be left incontinent and impotent I would have gone for prostatectomy, at least I’d have had a better chance of success with the cancer, even if the side effects had been the same!
I stayed in touch with a guy I met there and his cancer came back with a bang too!
Im going to try cybernife next I think, they do it at the Royal marsden, London.
good luck whatever you decide Troc
I have seen your other thread as well. I presume that the cancer is contained, why not go for RT? 20 sessions and it's all over with a good chance of success.
Thanks for that ,it is really appreciated,and I have a consultation with my main urologist on Thursday to discuss Bone scan and pet cholina results.(will consider this too)
If there is no spread till now they recommend prostatectomy.
One has even said one could first try total ablation with cryo but the problem could be peripheral disease.
As far as prostatectomy is concerned I am told by one set of surgeons da vinci (best done from my geo location in Germany) however I was diagnosed now in Spain who acted very fast with parametric MRI and fusion biopsy.They impressed me and told me if i do radiotherapy and the recurrence rate can also be high it is then hard to operate laparoscopically.
They say a really good surgeon is basically as good as da vinci ,this seems to be backed up by some figures.
I had a lot of experience the last 7 years as my wife had oesophageal cancer which was sucessfully treated as we went to the very best surgeon.
The trouble is from what I have read (volumes, plus consultations all in 3 weeks) that this cancer is widespread and so many surgeons do the ops.
However I have seen the danger of aggressive cancer and need to act fast.
Thank you again and I will watch for more posts.
Dear Billy Thank you for this .
It see that IRE is not as simple as they make it sound.
They recommend in Offenbach for me IRECT.
For cyberknife one of the best centres is in the UNI Klinik Cologne.
The director Professor Marnitz is a brilliant woman.
I hope I do not get to that point .
I really wonder why so little follow up is posted in this forum on Offenbach Vitus.
It seems they are very good at marketing .
I know if you ave skilled web designers you can put your name upfront on any search but I cannot find sufficient individual independent patients.
Thanks again and good luck too
You are facing a big decision, and it's difficult when time is short.
My experience of Nanoknife/IRE has been much more positive than BillytheWhiz - sorry to hear Billy that it did not go well for you.
I had a Gleason 4+4=8, stage 4, PSA 11.5 by time of operation, which was July 2018. Small but aggressive tumour, breaking through the capsule.
At that time, Prof Stehling (or his team) were the only ones who would operate Nanoknife on such a high Gleason score. That may or may not be different now - at that time Emberton in London was not doing anything above a Gleason 7.
I did not need a 3D biopsy, but had all the other super-invasive and super expensive tests in Offenbach/Wiesbaden. Recovery was quick and side effects are as limited as promised - it's all less certain when the score is as high as yours and mine. Essentially, post-operatively incontinence has never been an issue and erectile function relatively quickly returned to near normal, if never quite the same as before.
I've been monitoring my PSA score every three months since the operation - 18 months ago now. My PSA score dropped immediately to just above zero and raised very slowly from that point. On my last test in November it had reached 0.77 - still very much within the safe zone, but it has begun to increase more rapidly than in the first twelve months - so I'm watching carefully. We know there is no guarantee with Nanoknife. But the point that swung me in favour of having the procedure was that statistics seem to suggest that even with radical prostatectomy, the cancer can return elsewhere in the body. We all have heard of such cases. Sadly.
My urology consultant in Dublin recommended Da Vinci radical prostatectomy, and if I wanted the best he recommended a professor in Leipzig - who had operated on my (Dublin) consultant's own prostate condition. I went to visit him, in Leipzig, and the notes below refer to that meeting.
Before making my decision on what procedure to have, I wrote a list of pros and cons, which I'm copying below:
NANOKNIFE/IRE – Prof. Stehling
· Buys time, new techniques to arrive in coming years
· Promises fewer side effects – incontinence, erectile dysfunction
· IRE possible again, later
· All other treatments remain possible
· Outcomes similar to surgery, lifestyle better
· Accepted, clinically trialled
· Prostate removal prevents any spread from this source.
· Intra-operative lymph node biopsy
· PSA-based follow-up
· Additional therapies (radio, HIFU) possible later
· Surgery has improved immensely
· Not clinically trialled.
· Risks associated with leaving prostate in situ
· Gleason 8 treatment is at the very boundaries of this technology
· Next stage is radiotherapy, with very serious internal side-effects
· Vascular bundle nerves will be damaged due to extra-capsular – ED resulting
· 2% risk of incontinence
· Certainty of change in orgasm
· Potential change in libido
· Penis-shortening (“low risk”)
· Gleason >7 (i.e. 8 and above)
75% recurrence-free at 60 months (what if extra-capsular, as I am?)
· Quotes a 90% chance of a ‘complete’ treatment (no return) … BUT …
· 20% recurrence of extra-capsular cases (i.e. me) (so reduces to 80% recur-free)
· 0% reported
· 98% regain full continence
· 90-95% recover function
· 80% of patients recover ‘function’
NOTES ON NANOKNIFE
· Hormone therapy to shrink gland - unlikely to need
· Index lesion, not the gland, is ‘the motor that drives the disease’
· Based on scans, no ED expected
· “not sure there is any treatment on the market that will have a significant impact on your survival” (i.e. outcomes between Da Vinci and Nanoknife differ little – quality of life in interim does)
· Surgeons have no plan for a recurrence
· Extra-cap, high risk of disease progress
NOTES ON DA VINCI
· 20% patients with aggressive discovered to be worse than thought, in surgery
· 20% discovered to be not as bad as
· Will attempt to save both bundles
· ‘Frozen section’ treatment of lymph nodes (biopsy of removed tissue, during op)
I'm happy to answer any further questions you might have - online or on a phone call if that's easier.
Best of luck.
seldom seen such a brilliant analysis and my whole life that's what I do but not for life and death in the sense of most people.
I also have thought of throwing money at the procedure and then later figuring out if we get new facts and new therapies.
This may be a factor why certain private practices stopped because there is no commercial demand and no insurance yet pays.
The problem for me ,is more the risk of confronting the death risk of missing the small piece of cancer in the wall of the prostate ,and then having it invade my whole body.
I have accompanied my wife through seven years of a much more virulent cancer.(oesophagus 7 cm!)
Chances of survival were 15 per cent in first year but we found best surgeon probably in Europe and it has had one recurrence.
That has been solved for the moment but at great cost,veins shrinking ,white blood cell count at 3 k.
Total removal,radiotherapy,chemotherapy ,using stomach by pulling it up in a seven hour operation and then recurrence 5 years later then again radiotherapy and chemo.
Cancer is never really cured even though the people around you think that way.
The point for me is if you get it early then you should take focal therapy but if you are late and I am relatively late due to urologists not listening to me a year ago then you should not go for the high risk option.(except that's what I often do in life...)
I am still thinking.
Today talked to a top urologist who used to do it in Offenbach,he looked at the fusion biopsy slides and told me "Focal is not for you"
he was a pioneer but said it depends on the bone scans and Cholina pet.(coming this week)
If these are reasonable one could try but I may be back in Da Vinci mode in 3 months.
So I as usual am waiting for the very last results and 2 more opinions because there are too many posts not convinced of Vitus and they do a very hard sell.
The hard sell is what worries me but I am still able to jump either way.(excuse the typos am rather nervous)
Thank you again!
Dear Cillian one other question if I may,how old are you?
As you seem to have a good sense of analysis you may also be humorous with the name springchicken .
Thanks for what you have told me till now it valuable information
all the very best
Hi Cillian, Congratulations, early days yet but I'm pleased that it turned out well for you. I have to correct your stats though, although Stehlling seems to tell everyone (or at least me) there is 0 chance of incontinence, and that erectile function would return inside 12 months that's not true, 18 months on and I'm still leaking and have total ED.
After having a great experience with Prof Emberton about 18 months prior maybe the standards I expected were a little high but I found the care to be pretty poor too, I was kept in a small holding room with of course no food or water, it did have a small TV/ monitor but it could only access one add for BMW, 8 hours of isolation, watching a re-run of the same 5 minute add is mind numbing to say the least, it takes commercial product placement to the next level. There was no sign of Stehlling pre-op, I was just walked to the operating chair, met with the anesthetist and the next thing I remember is waking up in incredible pain in an ambulance on the way to the overnight clinic to spend the most painful night of my life.
I couldn't see Stehlling, though I did ask, the day after either, just to find out how he thought it went. They were incredibly busy I grant you and the urologist there seemed pretty incompetent so not much help-not a great scenario in that setting because Stehlling himself is a radiologist not urologist. Overall I had the feeling something had gone wrong with one of the other patients and they were all a bit rattled.
They did have a much better urologist when I returned for a check to see if they could help with the side effects and things so hopefully things may have improved by the time you got there, but my experience was, whilst the marketing was very slick, the experience was very poor. It's been a life and relationship changer for me so whilst your experience seems to have been quite the opposite to mine, I think it important that Troc and all others know that not all that glisters is not gold when it comes to Vitus ( a name change since I was there)
Having said all that I do believe IRE has a great place in the fight against this awful disease, in the right setting and the right hands, perhaps not for Gleason 8's and 9's without adjuvant therapy at this stage and certainly not in Offenbach.
I hope you're own story turns out to be a complete success Cillian and ever such good luck to you Troc, whichever way you decide to go my friend, it would be great if you would keep us all informed post event.
All the very best wishes
I'm 56 now. I was 54 when I had the operation in July 2018, days before my birthday.
I'm recently divorced and in a new relationship. Those factors, along with my relative youth as a prostate cancer patient, contributed to my choice of treatment.
I'm always careful not to 'recommend' the IRE/nanoknife procedure to others, because there are so many variables. I'm happy with my choice to date, but knew from the start it may not be a permanent solution. If cancer does recur, and statistically it well might, I don't know whether I'll spend the same amount again (if I have it to spend!). The thing is, it seems there is no guarantee with any procedure that cancer won't return, so I opted for quality of life in the interim. Luckily, I have got what I wanted, Billythewizz did not, which I am sorry to hear.
I note Billythewizz' post below and agree with pretty much all of it. It's clear that he and I had very different experiences and outcomes at the Vitus clinic, but it is also true that with Gleason scores like ours, we are on the outside edge of treatable cases. I had a face-to-face meeting with Prof. Stehling a month before the op, where I grilled him on all my questions about the procedure. I found he was frank and factual. I agree the outfit has a slick marketing operation, but I did not feel he was selling me snake-oil. He was generous with his time on the day (you might say he could afford to be!). So, I put my trust in him. Time will tell how wise that might have been.
Choose carefully and best wishes.
am approaching crunch time for the decision.
Have a firm op time 3 march in the high volume Saar University clinic but that's a long time.
Am scare to death of the Pet Cholina scan.
Will keep in touch with you.
They tell me there is an op to stop incontinence but at this stage am still hoping we get past this part
all the very best
learning more every day
wish you further success
Just fyi, the Da Vinci surgeon I visited in Leipzig quoted a rate of 98% success regarding incontinence issues (as per my list of pros and cons). From memory, i think normal prostatectomy is about 80% successful. Of course, these figures quickly become out of date, as technology and practice improves.
The main problem is statistics mean nothing if you're one of the unfortunate 2%. I've been fortunate in not being badly affected by incontinence.
ED is a different story however. I think it would be more difficult if I wasn't on hormone therapy. Hormone therapy has removed all desire which probably exasperates ED but also makes it easier to cope with.
Hi YoungManSorry to hear you've had mixed/bad results. What treatment did you have?
I had laparoscopic surgery. Things were improving with ED but unfortunately PSA and psa pet scan showed occurrences in ribs, hence chemo and hormone therapy. I think ED is related to the chemotherapy and hormone more than surgery.
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