Hi, I have just been diagnosed with early stage localised prostate cancer. I have not yet spoken to Oncology or Radiotherapy professors, that's due in a couple of weeks.
I am researching the options and saw HIFU Focal Therapy this on the web. I sent a message to them on Saturday and I had a 30min call today describing the treatment. From what I've seen, it looks like a no-brainer compared to the risks related to alternatives, including robotic surgery which sounds the best of the rest. I don't want to wait and see and radiotherapy looks risky.
I am 66, otherwise in good health and keep fit, still working, run 8 miles most Sundays and were it not for Covid had entered 5 half marathons this year (all postponed). I have organ confined prostate cancer Gleason 3+3=6 with a maximum core length of between 1.5 and 2cm. Prostate Cancer has been found on the Left hand Side of the Prostate Gland. (5 of 6 cores taken were positive) The biopsies taken on the Right Hand Side of the Prostate Gland were negative. I have private health insurance and the Focal Therapy clinic think I should be a suitable candidate.
I am somewhat overwhelmed by all the alternatives, including Nanoknife which HIFU states is not as good as its treatment which they say has a very strong success rate with limited issues prevalent in the alternatives.
Any views on this would be much appreciated, especially from anyone who has undergone HIFU Focal Therapy. Thank you.
Good luck with the consultations. It's a minefield. I could write a long, boring and contradictory blog on the subject... wait a minute....?!
Probably conjecture but I came away from the NHS doctors (1st keyhole lap, 2nd radiotherapy) with the feeling that they were in competition - no doubt conjecture on my part. However the consultations were recorded and I listened carefully afterwards. The RT doctor couldn't get his CD player to work, I used my phone. There were a couple of things that on reflection irked me, and the London doctor (Harley Street) was polite but quizzical on the NHS surgeon's HIFU comments, which he explained were quite erroneous. The keyhole lap surgeon did say that if I were 50 he would strongly recommend a prostatectomy, were I 75, HIFU but as I'm an ostensibly fit 66 year old, he said I was in the middle and good luck with the choice.
No further MRIs done to-date. Apparently the London surgeon (described as a Top Doctor on the web) and his multidisciplinary team discussed my case last Thursday and arrived at what appears to be a more in-depth conclusion than was the case with the NHS. Who knows, but I have much more confidence with the London doctor and his team. Ultimately it will boil down to luck but I am trying to make a judgment that I won't regret later.
Update: Aviva has now responded - the lady has been immensely helpful I must say, but unfortunately there is likely to be a large shortfall (maybe £10k+ and I don't know about aftercare). She has suggested another surgeon and hospital who are covered and I'll start the process again. Before emailing me, Aviva kindly checked with the 'new' surgeon's secretary and I can still be scheduled for December. I'm very keen to move forward quickly although it's clear that the cancer has been there for years - again, sheer luck that through a chance remark to my GP that it came to light.
I also have an old critical illness cover policy which expires next February after 17 years. Maybe this will be successful, I'll believe it when I see it but in any case I am lucky to have PMI through a client's group scheme (I'm a consultant - an old one). I don't know if there's a broker but I seem to be doing all right, the Aviva lady doesn't seem fed up with me yet.
Onwards and upwards.
Good luck Robin.
You are right, there is a massive element of luck in this, but also you need to have confidence in your team that clearly the NHS did not provide you.
My experience from a similar start point has been different.
Like you, loads of research that at times sent your head spinning, but I had the benefit of having a consultant (in another discipline) friend who helped me to get some clarity and importantly the right approach/questions to ask. Also like you, before the meetings with the robotic surgeon and oncologist, I anticipated that they would be pedalling their own disciplines, but how wrong I was.
The oncologist went through everything with me, even down to reviewing and interpreting the MRI pictures and at the end of the consultation came to a reasoned recommendation of Brachy (not his discipline). He then set out where this could be done, which he immediately followed up with a personal recommendation of who he would choose. An appointment was booked within 48 hours for a full assessment with a TRUS and it turns out that his consultant recommendation Prof Stephen Langley has an impressive CV – see prostatebrachytheraphycentre.com .
We then discussed HIFU and he was very complimentary stating that recent results had been showing some very good outcomes, so was more than happy to refer me to another Prof. at UCLH for HIFU, where he said they will carry out another MRI on one of the latest machines.
The robotic surgeon pitched the benefits of surgery being the best solution available (if you discount the potential side effects) but supported the oncologist’s recommendations.
Of course, I still do not know if I am suitable for either treatment, but I do feel more confident that I am getting the best advice. I am also looking forward to meeting Prof. Langley as not only is he highly experienced in Brachy he is also a distinguished robotic surgeon, so I anticipate some good balanced quality advice specific to my case. I will of course still have everything crossed!
Thank you for your message & of course, good luck with everything. I've just had an update: the original surgeon from London where I concluded that Princess Grace was too expensive, now says he could do the operation at the London Clinic. I would need to see if Aviva would cover me there. At the moment I have an appointment with the alternative surgeon where the operation would be at Royal Marsden. But do you, or anyone reading this have any ideas about the degree of modern equipment at either hospital?
My take Kenny is that the equipment is only as good as the person using it. So if you have faith in the consultant then the equipment they are using is sort of secondary. I also suspect that the good consultants work with the best kit.
I was hoping to have HIFU but the London doctors looked at my imaging from the NHS and thought that there was likely to be higher grade prostate cancer than was reported on the transrectal prostate biopsies. Unfortunately, it appears that I am unsuitable for focal therapy because the cancer appears to be very close to the midline. They recommended that I have whole gland therapy, which is now scheduled in a few weeks, in December at the London Clinic. I was disappointed by the news but on the other hand, this is a material development which with luck will keep PC at bay indefinitely. I am to have Retzius sparing prostatectomy with intraoperative NeuroSAFE.
Kind regards & best wishes.
Good luck Kenny. Fingers crossed for a great outcome
Thanks Robin - you too. It sounds very detailed, I suppose as you would expect. For interest, here is the note:
There are several ways to perform a robotic prostatectomy. I perform the procedure with the following modifications: Retzius-sparing: for the faster recovery of bladder control, the bladder is kept in its natural position by approaching the prostate from behind the bladder (posterior approach). In the more often used method from the front, the bladder is released from the abdominal wall full functional urethral length preservation: for better bladder control, I retrieve as much of the ring of muscle that contracts and closes off the urethra that is concealed within the prostate NeuroSAFE: to keep more of the nerves needed for erections with less risk of leaving cancer behind, a pathologist checks the edges of the prostate during the operation. If the pathologist reports disease on the side of the prostate, I can remove more tissue in the area that was positive Suprapubic tube: to drain urine more comfortably after the operation, I insert a tube through the lower belly instead of leaving a catheter in the penis
I am pleased about that last bit... !
Very useful and those procedures sound very positive.
There is of course no guarantee that I will be suitable for the Brachy or HIFU and may well follow you on the surgery route, so these will be some good questions to ask the surgeon.
I thought I would update this thread as hopefully it may help others.
I am so pleased that I decided on a referral to the Royal Surrey in Guildford. Good research does pay off!
First impressions, the Urology department is a first class facility having been built last year and better than many private hospitals I have been to. It also houses the top Brachy unit in Europe and apparently number 3 in the world (mind you I am not sure how they measure that). I met with Prof. Langley who for me was equally impressive, as not only is he highly experienced in Brachy he also used to conduct HIFU treatments. He was therefore able to give me a side by side comparison of both Brachy & HIFU and explain why they stopped HIFU, which was primarily down to poorer outcomes.
So for me, the decision was made, Brachy it was, if I qualified!
A flow test and TRUS followed. A good flow test is essential for Brachy as the radioactive seeds will cause the prostate to temporarily swell and constrict the urethra, so a healthy urethra at the outset is a major plus. Mine was borderline, and whilst Prof. Langley was happy to proceed with Brachy he did offer a mini TURP to improve the flow, so I have taken him up on this offer.
For Gleason 3+3 and 3+4 they offer Brachy alone, but for my more aggressive 4+3 I must combine Brachy with Hormone Therapy for a max of 6 months. This is 150mg of Bicalutamide daily and 20mg of Tamoxifen bi-weekly to counteract breast issues. Also a low GI diet and up the exercise routines.
So the treatment plan is, HT started yesterday, Mini TURP on 9th December, 10/12 week healing period, then Brachy implant.
I would also add that being an NHS patient, I was concerned that I would have no choice on who carries out the procedures. However I am pleased to confirm that all will be carried out by the Prof!...and at The Nuffield private facility.
Whilst I know there is still a long and probably difficult journey ahead of me, I consider myself very lucky in the choices made so far and 'hats off' to the NHS for having such a world beating facility at Guildford.
.....and Kenny, wishing you a successful op and recovery...... can't be long now.
All the best
Sounds like you're in good hands & in the right place, can't be much better all round I would say. Having faith & confidence in your doctor is really important, clearly. A lot is riding on it for both of us, I really hope we both come through it 100% - and without experiencing any of the nightmare scenarios that the outliers in the stats would suggest.
I'm all set, operation is on 21/12 at the London Clinic, out on 23/12. I'm going down to London on the Friday beforehand for the hospital pre-op visit. I believe the train tickets coming back will come online tonight at midnight when I'll be right on there. I have my alarm set in case I drift off!
I also have to travel from Scotland to get the catheter removed on the 4th. So it's a bit awkward logistic wise but insignificant in the long run, I hope. They all seem hugely professional and immensely helpful. I also have a CIC claim in for a policy I took out in 2004 and expires in Feb 2021. I'll believe it when it's in the bank but it might be a silver lining on a dark cloud.
This week I have received 2 duplicate letters from the NHS with appointments for pre-operation, immediately followed by another saying I was on a waiting list for urology in Edinburgh. I had already told them that I was being seen privately in London and had a letter cc'd from the NHS Professor to my GP confirming that. All fixed with another phone call, but they seem chaotic nonetheless.
I'm pleased that you've had a very different experience and seem to have landed on your feet with a great doc and best equipment.
Had I gone down the HIFU route I would have been harbouring doubts after reading your note. Whilst my surgery is more invasive, with escalated side effects, nonetheless on balance I am happy with the recommendation. No trepidation, I just want it done. My only worry is that they find something more sinister, which they've hinted might be the case. I am cracking on with the pelvic floor exercises!
Please keep me posted on your progress & I'll do likewise.
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