HIFU Focal Therapy

User

Posted 31 Oct 2020 at 17:27

Cheers for the kind words Kenny

I’m almost a year on now and pending quarterly PSA blood tests almost back to normal. Continence pretty much where it was pre surgery. Might have a drip if I force wind or have an exceptionally large sneeze without squeezing pelvic floor....mostly that second nature now. Nights are perfect and only get up once for a pee usually. Sex life as before...in fact in some respects better now as don’t need condoms or the pill.

Pelvic discomfort when sitting on a hard chair all but resolved.

One of things to be mindful with Prostate Cancer is it tends to be multifocal. Sometimes small tumours can be missed with imaging/biopsy.

Histology showed that in my case had I waited a few more months it’s likely it would have breached the prostate capsule although pre-surgery imaging and biopsy told a different story.

Good luck with whatever route you take. There are no guarantees with any path. My view was try and buy as much quality time as possible in the hope that if their is a reoccurrence that science and immunotherapy will have matured a little.

Please shout me anytime if you have any questions as very happy to help where I can.

simon

Edited by member 31 Oct 2020 at 17:31 | Reason: Not specified

User

Posted 09 Nov 2020 at 15:53

Hi All,

9th November 2020. For interest, here is an update on my situation. I had a meeting with the consultant surgeon in London (I am in Scotland) on Friday evening. The upshot is that the cancer is bigger than was thought, is close to the sphincter and whilst I could still have HIFU, I am recommended to have robotic surgery, and soon. The suggestion was that the NHS did insufficient biopsies (12) and the surgeon seemed unhappy with other aspects of the report.

I have decided to progress the robotic surgery, privately, which is now scheduled for next month. This is on PMI which I am fortunate to have, as a client added me to his group scheme. I have 'enhanced cancer cover' with Aviva. However, the consultant states that the equipment is unavailable at the hospital Aviva covers me for (Princess Margaret) and the operation would need to be conducted at Princess Grace (both are in London). Aviva only partially covers the latter and the shortfall is described as being very large. I have asked Aviva if they will cover me anyway given that the equipment is unavailable for the Princess Margaret hospital, and I am at present awaiting a reply.

On the NHS I would have a long waiting list for robotic surgery, and whilst keyhole is a possibility sooner, I have considerably more confidence in the London surgeon and with robotic. For domestic and work reasons (I'm still working from home with my son) I have discounted radiotherapy. Anyway, I am anxious to have the operation conducted soon. I am recommended to have a spinal block and a full general anaesthetic.

Has anyone else had a similar experience with hospitals being covered / not covered? I don't know if there's a precedent and if such latitude exists from Aviva, I really hope so. I hope to find out soon and will update on this forum.

Best wishes to everyone and thank you for all your constructive, educational and very helpful responses to-date.

Kenny

User

Posted 09 Nov 2020 at 17:22

Not sure about all of that but we didn't have PMI so the op cost £18,000. One of the issues you might need to think through is the aftercare - will the Scottish NHS system pick you back up and provide things like continence / ED support, regular PSA tests and access to a urologist or will you be forever destined to travel down to London for reviews and appointments? As a point of reference, every follow up PSA test cost us £180 until it was handed back to the GP practice to arrange.

We realised too late that the NHS in our area would not support J because he had the op privately so he had no access to a clinical nurse specialist, district nursing, etc., and we had to fight hard for referral to the NHS ED nurse.

It might be different in Scotland?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 09 Nov 2020 at 17:51

Lyn, I think this is very much a case of a postcode lottery. As you may recall, I had all my treatment privately, and then retired, losing my medical insurance. My consultant simply transferred me from his private list to his NHS list and all my post-treatment care and follow ups continued exactly as before. The same thing happened with my kidney cancer: private treatment then NHS follow up.

Best wishes,

Chris

User

Posted 09 Nov 2020 at 19:09

Hi LynEyre

Thank you for your comments, Chris you too. I had not even thought about aftercare.

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, if I was 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.

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 - a very old one).

Onwards and upwards!

Best wishes,

Kenny

User

Posted 10 Nov 2020 at 07:13

Hi Kenny

I had my biopsy done at the Princess Grace. And main surgery at London Bridge (Guys Cancer Centre). Both have the latest Da Vinci Robotic Systems and very modern. Rooms were bigger at Guys but Princess Grace had all the Sky TV channels (useful for first 24hrs) or take a Media usb thingy for Netflix :-)

Critical illness definitely worth tapping up. Very policy specific I suspect but a few of them only pay partially for say low grade Gleason 6. Anything above that normally a stronger case. You might find you need to submit post surgery histology results for them to take a final view on claim settlement. In 40% cases the cancer grade is upgraded post surgery (mine went from 3+3 to 3+4). I submitted all my case data from day one in chronological order with a covering letter. More information the better usually.

Best of luck for London and wish you an excellent outcome. Keep us posted!

Simon

Edited by member 10 Nov 2020 at 07:15 | Reason: Not specified

User

Posted 10 Nov 2020 at 08:33

Hi Simon

Thanks - that's great advice. I am calling the new alternative today to get things going. The operation would be at the Royal Marsden Hospital in Fulham London.

I'll keep you posted & good luck with everything.

kind regards

Kenny

User

Posted 10 Nov 2020 at 09:03

Cheers Kenny

The Marsden have all the best stuff being the UK centre of excellence.

It would be choice in the PCa ever returned.

Cheers

Simon

User

Posted 10 Nov 2020 at 09:21

Thanks Simon, that's reassuring. I've been mulling over this morning if I was maybe making a mistake in going for the Royal Marsden over Princess Grace (although I know much depends on the surgeon). Today I'll try to get the process started.

Best wishes,

Kenny

User

Posted 10 Nov 2020 at 09:29

Originally Posted by: Online Community Member

NHS is no longer allowed to do this, although it used to be NHS policy - if you'd had any private procedure for an illness, you couldn't go back into the NHS for further treatment. This backfired enormously - lots of people who would normally have had private treatment no longer did, because they'd lose NHS access, and together with the resulting increased load on the NHS, the NHS lost loads of income from its private wards which are run at a profit to pay for other NHS services.

This resulted in a U-turn about 10 years ago, where the NHS is now required to work with private providers, share test results, etc, and patients are allowed to select parts of their diagnosis and treatments to be handled privately while remaining under the care of the NHS. There are detailed rules for clinicians working in the NHS - they are never permitted to mention private procedures to you, unless you have first said that you want to know about them, in which case NHS clinicians are allowed to say what private procedures you might benefit from (although they might not necessarily have expertise to identify all relevant private procedures). This has resulted in many patients returning to private care, reducing load on the NHS and the NHS being able to again make a profit to fund other activities from offering private procedures itself.

User

Posted 10 Nov 2020 at 10:08

Yes, surgeon skills very key. High volume and good stats are the things to look for. My surgeon was doing 3x the ops as many others with great stats. Obviously like every case they are not always great outcomes. If I’d have left things another few months I would have certainly been in a different place irrespective of who was doing the work.

User

Posted 10 Nov 2020 at 10:17

No issues switching between NHS and private here. In fact most of the staff I have seen take the view that private work takes the load off a very busy system.

Edited by member 10 Nov 2020 at 14:30 | Reason: Not specified

User

Posted 10 Nov 2020 at 13:44

Hi Andy, I know that you are correct in theory but we have a current member who had private RP in the neighbouring city and his geographic NHS trust is refusing to provide any support or clinical service at all, as is his GP, so in practice not all NHS trusts are complying. Also, we know that men living in Wales who opt to travel to England for radical treatment can have difficulties afterwards so NHS Scotland might also have its own rules? I wasn't sure, just thought it was worth flagging up as a question to ask.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 10 Nov 2020 at 14:02

Hi Simon et al

I've just had an update: the original surgeon from London where I concluded that Princess Grace was too expensive, not being covered by my PMI. The surgeon 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 does anyone reading this have any ideas about the degree of modern equipment at either hospital?

cheers

Kenny

User

Posted 10 Nov 2020 at 22:43

I am sure that all the London teaching hospitals have excellent surgeons and equipment. When I had a check up with UCLH recently, I took the opportunity to ask how they had coped with treatment since Covid and was told they were able to keep up by using other well regarded hospitals such as Princess Grace. When it comes to highly specialised treatment, I think it makes sense to go a centre specialising in that treatment. However, many hospitals now do Robotic Prostatectomy and providing you get a well experienced surgeon, I would have thought you could have it at a major hospital nearer home.

I started my HT at the Royal Marsden (Sutton), in 2007 within the NHS but had my RT in Germany in 2008 in a trial. The Marsden were a bit miffed but subsequently took me back under their wing as a NHS patient and referred me to UCLH for HIFU in 2014, also as a NHS patient. So I didn't have a problem reverting to the NHS, although some did I understand.

Barry

User

Posted 17 Nov 2020 at 02:02

My husband used BUPA and a different ( but near) London private hospital and I just checked and both the consultants I am familiar with operating privately there accept Aviva. One however was above BUPA rates so top up payments needed and one within so no top up. We do get a very small bill for each MRI as the bill is slightly over BUPA rates but nothing else.

During lockdown our GP has done the PSA testing with no quibble at all with a well PPE’d up phlebotomist . They also sorted COVID and urine testing on the NHS pre procedure. So other than reluctance to give a PSA ‘number’ ( preferring to tell him his PSA is ‘normal’ ( not sure who he compares with. Following his three focal treatments) ) the GP has been fine with support as needed despite his BUPA primary care

Kind Regards

Clare

User

Posted 17 Nov 2020 at 06:30

Hi Clare

I experience similar with my PSA bloods done by my GP. They are fantastic and the result is always out the same day as sent to local hospital lab. Unfortunately they don’t yet automate and email the result so the usual is either make an appointment or phone for result. I hate getting the number over the phone due to risk of error and prefer to see it myself.

Path I find works well is to call and ask for a printout of my blood report and pop up in person to pick it up. Seems to work well and I can file something tangible :-)

Simon

Notification

Join the online community now.