I've been diagnosed with prostate cancer, quite aggressive with a Gleason of 9 (4+5). No spread has been detected on a CT scan and I'm due to have a NM bone whole body scan on Friday to detect any spread to the bones.
Assuming there is no or little spread, I am keen to have a radical laparoscopic prostatectomy as soon as possible. Do any members have recommendations in the central south of England, private or NHS? There is one consultant I'm considering, Prof Christopher Eden at Guildford who is very high volume, plus another near where I live on the Hants/W Sussex border. There are also consultants in London.
I would welcome any recommendations or indeed advice on treatment.
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MarkS
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The NHS do PET CT scans. Indeed there is that facility at the hospital where I had my scan and I think that was actually what I had. I was injected with a substance to provide enhancement. I did ask if this was Gallium 68 but did not get a specific answer. I was told that my body was totally clear of any spread though this scan would apparently not show up any spread to the bones. Hence the NM bone scan on Friday when I will be injected with a radioactive substance, have to drink quite a lot of water and wait 3 hours for the scan.
I'm sorry that my answers are a little vague, I have been through an intensive learning curve over that last week!
PSMA PET equally comprises a waiting stage (like bone scan) after the radio ligand is administered. The waiting period varies between one hour and an hour and a half depending on the isotope used. If you didn't have this stage, than you most probably didn't have a PSMA PET scan.
Hi, Tall_Allen, I can't help but wonder, why in this case have you not pointed out the studies showing statistically greater reduction in erectile function (ED) from RP compared to radiation? My impression is that that is the typical response from you for aggressive or high-risk PC that is confined to the prostate and lymph nodes. Is that the result of new information?
My first action when I see a post like this one, where the fellow appears to have chosen to have RP in the future without indications that they have carefully considered the trade-offs, is to look for your reply per the paragraph above, which usually has appeared. If you don't make such a reply, my next inclination is to point that out myself, and refer to one of your previous posts. However, if you have good reason to no longer provide such advice, I'd like to know that.
My own experience is that I drank the "nerve-sparing" kool-aid and proceeded with RARP without knowing the poor statistical success rate for erectile function, and suffer from ED as a result. However, I am thankful that my PSA has remained below the limit of detection (<0.014 ng/ml) through 4.5 years, and for Trimix, which for me has been an effective treatment for ED, although bothersome.
Thank you for all the helpful information you provide!
So often, patients who are newly diagnosed have an initial reaction of "just cut it out" without understanding that radiation, which treats a wider area, is more successful at getting rid of all the cancer compared to surgery for high risk PCa. As you correctly state, the side effects, ED and incontinence, are less with radiation.
You can’t go wrong with Prof Eden. Top of the top prostate surgeons in the UK, if not Europe. I went private with him as I could not find better. He takes a frozen section which is looked at under the microscope while you are still out to ensure margins are clear. That is not done under the NHS. Also, under the NHS prof Eden may be your consultant but you may have another Surgeon do the procedure. It depends on finances of course but if you can afford the £22k for the operation then I think it is money well spent. Good luck on your journey and reach out if you need anything else.
Dear MarkS,Interesting that you are looking for a recommendation for a surgeon in S of England for a RALP.
I fully agree with Tall Allen is that before you decide on what action to take then all the checks need to be done to ascertain if there has been any spread. Then once you have determined exactly what and where the problem is decide on the best course of action having considered the options open to you.
Best of luck on Friday with the bone scan.
If it is contained with the prostate capsule and you belive that surgery is the best option then as with chuck67 I would have no hesitation in recommending Prof Christopher Eden.
It was last week when I had my prostate removed. It was done by Prof Eden at London Bridge, Guys hospital. It was a Retzius-sparing RALP with the use of NeuroSAFE frozen section. There is a pathologist in the o/r who checks to see if the cancer is approaching the capsule. If no cancer then the nerves and blood vessels running down the prostate can be saved.
I would say that I also went to the Royal Marsden hospital and spoke to a radiologist and was given the option of 5 session, or 20 sessions of radiation which would have been curative.
The main reason why I selected surgery over radiation was that I am plagued with obstructive issues, eg getting up frequently at night and having a pathetic flow. Radiation suggested that having radiation treatment might make some obstructive issues less good. It seemed that the Retzuis sparing technique of prostate removal would ensure at least there was no prostate causing restrictions of the urethra and others who i spoke with after RALP suggested that their obstructive issues post surgery had improved. Also Retzius-sparing technique greatly helped with regaining continence quickly because it does not destroy many of the anchor points of the bladder. If the nerves and vascular bundles are sparing then e/d many not be such an issue.
I must admit that I can not recommend Prof Eden highly enough. As Chuck67 suggested he probably is the top Retzius-sparing RALP surgeon in the UK and certainly on par with the top European surgeons since they have been doing the Retzius-sparing prostatectomy in Italy for some time longer and Prof Eden recieved some training from the Italian Prof and Korean Prof as how to perform the Retzius-sparing prostatectomy. They say it is quite involved because they go in through the stomach and then back up underneath to get to the prostate so they have to be highly skilled when using their DaVinci machine.
It is often about surgeons being proficient in the operation that they undertake and in medical papers it points to a surgeon having to have done at least 50 of these Retzius-sparing operations to get good at it. Hence the higher the volume and a good record of success are the key to selecting a surgeon. Prof Eden has both of these in spades.
I believe any person on the pc journey needs to have these types of people in your corner to be able to explain what they can do or not do. Prof Eden and his secretary Mr Simic provide a very professional service. London Bridge Hospital was excellent. Operation took 100 minutes . 2 nights stay. Up and moving around the ward after the first day. Home after 2 days. 4 days post op and I'm able to continuously walk (slowly) for 20 minutes. Catheter removal next week. In very little pain ,controllable by paracetamol. Wounds 6 stabs in stomach are all dry and dressing removed. Driving tomorrow?
Sorry for such a long answer to a simple question but Prof Eden is without doubt most excellent at what he does.
I hope this helps. But if you want any more information then happy to share what I can since often these things are like steeping into the unknown and its only the people who have been through it can give others an indication as to what they thought it was like.
Prof Eden does have several YouTube videos. One where he talks about pre and post operation expectations. Other videos nasties show exactly how they remove the prostate and the anastomosis(20 min video) . Like everything in life its good to see for yourself what is in store.
Dear JustforMany thanks for your reply. To be honest what I have been given a half day appointment at the hospital to ascertain if the catheter can be removed successfully. As yet I have not been informed as to exactly what this half day appointment is to do. I am told that the hospital is to contact me to fill me in on the details as to what to expect. However, your top tip as to have a cystograph first to check for anastomosis tightness sounds like what I need to ensure they do straightaway. No point of even thinking of removing the catheter if there are issues with the anastomosis tightness.
If I have not heard from the hospital by the end of the week I will chase them up before I go on 16th.
It's a back-pressure test. They pump saline water with contrast enhancer upstream through the catheter. At regular intervals, as the bladder fills up, they take x-rays to check for any leakage outside the bladder. After the bladder gets filled to capacity and holds for some minutes you will be asked to roll around so they can take an x-ray at 90 degrees to ascertain that there is no masked leakage. If successful, they will void the bladder and send you for catheter removal
Dear Justfor,Thanks once again for the full explanation as to what I am to expect for my half day back in hospital to see if the catheter can be safely removed. That all makes perfect sense what you perfectly describe. Seems like the bladder is an amazing piece of kit when you think about how it has to perform.
Like lots of medical stuff then it is always good to know what to expect.
As I say I suspect that the hospital will provide such details ahead of the appointment.
I also have been given a dozen sessions at a well man clinic. I did do lots of pelvic floor exercise, about 1000 per day before the operation and I am told no pelvic floor exercise until the catheter is removed. They suggest that once the pelvic floor muscles are tightened back up then this futher helps with continence.
Just to say thanks once again for the heads up on catheter removal. Much appreciated
Many thanks, Wishyouwerehere (Pink Floyd fan?), for such a comprehensive reply. I did try to speak to Aleksander Simic this afternoon but he was ill. However he did very helpfully reply to the email I sent subsequently. Prof Eden is on hols at the moment. The waiting time is about 2 weeks for the consultation and a further 2-3 weeks for the actual op which would need to take place in London. I will study your reply.
Mr Simic is always very responsive and any administrative problems he will sort out. He is very accommodating.
Prof Eden is a study in professionalism. He has a way of being able to impart fairly devastating news in his calm unflappable manner. He will answer any questions that you may have. I suppose having done this for 35 years then these top surgeons will have delivered bad news to thousands of people and answered countless questions. He will tell it to you straight, your options and what he can and can not do. He does not trade in "snakeoil". He will keep you right. He is extremely efficient and runs a well oiled ship and I can imagine that he does not take fools gladly.
It is now 5 days post op. I would figure that I am about 70% there. Still get tired early evening and need a nap. Pain is largely gone. Eating normally and guts are getting back to their usual function and hence stomach extension has dropped because the GI tract is producing less gas.
As justfor points out the next step is making sure that they can whip out the catheter and that the reconnection of the urethra to the bladder (anastomosis) is all good. I thought that they were going to put in a suppubic catheter but no they put in a standard catheter. I suppose that there are swings and roundabout as to which one is best. The problem with a suppubic catheter is that they would have to go back in? Whereas a standard catheter its more straightforward.
Anyway I hope these further comments help as to what to expect.
Many thanks for your reply. I've seen Roger Waters and The Wall at the O2. Locally we get Oz Pink Floyd and a group called Wall of Floyd who I like! Best wishes for your catheter removal. With a Gleason score of 9 and apparently no spread but with capsular irregularity, I believe time is of the essence and that will be my main criteria.
Dear MarkBest of luck on Friday with the Bone Scan. I hope it shows no spread.
Just back from a 30 minute walk, since it eventually stopped raining. Feeling a bit better day by day. Let's hope the catheter removal trial next week allows for its removal.
Time was a bit of an issue with me since with the tumour growing then the last thing I wanted was it reaching or approaching the capsule of the prostate. If it had then the chances of saving the nerves could be compromised. Luckily enough the NeuroSAFE procedure showed that it was all clear, so all the neurovascular bundles were saved.
I also must admit that, mentally, I am happy that the whole thing is out and I am no longer nursing a ticking time bomb. Certainty sounds good. But there is no real absloute Certainty since there still remains a tiny chance of it coming back or so I am told.
Floyd. Old enough and lucky enough to have seen them live many times back in the day. Recently saw Nick Mason at Royal Albert Hall . Off next Wednesday to see the Australian Floyd at G live in Guildford, since we do not live far from Guildford. Not a fan of Mr Waters so I avoid his offerings.
I am sure that Professor Eden will give you some of the best advice available. I think everyone needs a Prof Eden when faced with pc; a straight talking, honest, personable, reliable, high volume good result surgeon.
MarkS, your cancer is more advanced than mine, but otherwise, we are similar. No evidence of metastasis outside the gland for either of us. However, no evidence of metastasis does not guarantee there is no micro metastasis. I also have a PSMA PET scan that showed no metastasis
I was advised that radiation therapy had the best chance of the best outcome by far. I have a one out of seven chance that prostatectomy would leave me a cancer free. So, a six out of seven chance that I would need additional treatment either right away or after a time.
I decided to “swim upstream “to take the slim chance the prostatectomy would “cure” me (as if there ever is certainty for any of us). I also reasoned that the prostatectomy might buy enough time for better treatments than radiation would be available to me. Some apply this metaphor to cancer treatments. If prostatectomy is a club, radiation is a shotgun. I want a sniper rifle.. There are new treatments being tried all the time.
It seems both of us are pursuing the road less traveled in our treatments.
Making my decision a little bit easier is the fact that I already have a penile prosthesis, so erectile function is not a concern for me. I have already taken steps to effect urinary continence by starting a physical therapy program.
Many thanks, everyone, for you suggestions and support. I will be keeping an open mind on the best treatment. I was supposed to get a call from urology at 0930 today - I waited in all day and nothing! I went down to the gym for a workout this evening and now feel a bit better!
Dear MarkS,It truly is annoying when urology say they are to make contact and then they fail to deliver.
I would say that I went through exploring different options. I consulted experts in radiation at the Royal Marsden. They suggested that they could perform curative radiation treatment either using CyberKnife with 5 sessions or a longer 20 sessions routine.
It was a close call between radiation and surgery. What factor for me tipped the scales towards surgery was that I was plagued with obstructive issues in that I had a miserable weak flow and regular trips at night to the bathroom. Radiologists suggest that radiation treatment may not improve this obstructive issue and had a slight potential to make it worse.
I thought that I certainly did not want a worsening of the obstructive issues.
The guys at Royal Marsden were excellent. Again you were told the facts as to what they could do and the potential problems. In terms of radiation treatment I suspect that they have some of the best experts and accurate equipment to deliver radiation precisely within the UK. If you are looking for a recommendation for radiation treatment then I do not think you can look beyond Royal Marsden.
As you know I opted for a Retzius-sparing RALP. Two weeks down the line, catheter out now. No requirement to wear incontinence pants since it all seems to be working well. In fact the flow now is strong that I am peeing like a stallion. No pain. Stab wounds healing over well. All in all getting back to normal.
Last night was the Auzzie Pink Floyd gig in Guildford. (Standing for 3 hours because the venue removed the seats to pack the punters in). Auzzie PF much better than the last time I saw them about 10 years ago. Worth a look if they are playing near you?
Dear Wishyouwerehere, many thanks for your reply. I've continued exploring various options. My current preference is for radiology and hormone treatment. The reasons for this are that the rate of incontinence seems relatively low and with prostate capsular irregularity, it is possible that there are micro-metastases. These should be vulnerable to the hormone treatment. Also, I could start this treatment straight away rather than waiting for an op, when the op might be delayed anyway with rooms being grabbed by the NHS were they to call a "critical incidence". Also, with the stress, I have redeveloped some atrial fibrillation which would be bad news for an operation. Yesterday at a lunch, I sat between 2 people who had had prostate cancer! One had advanced prostate cancer and a intestinal cancer as well, but seemed to be recovering well. The other had prostate cancer that was similar to mine. He had radiotherapy and hormone treatment and done very well on it. This gave me a lot of encouragement as both were looking fit. I am seeing an oncologist on Monday who specialises in prostate cancer, so we'll see how that goes. I've seen Oz PF and they're very good, better that the UK version I think.
Dear Mark,It is a very stressful time. I must admit that as soon as I made my mind up as to the option selected and got booked in for treatment it felt like a weight had been lifted since I was constantly trying to optimize and balance the conflicting treatment options.
I hope that your atrial fibrillation settles down now that you have opted for your radiation treatment coupled with hormone treatment. As you point out for your set of conditions then it's the right way forward.
I hope that there has been no micro- metastases. I would have thought that your various scans would have picked up on anything that has travelled outwith the prostate and they would know exactly where it was. As you say they are looking to use hormone therapy to deal with any "travellers "
I wish you the best of luck with it all and I am very hopefully that you have an excellent result.
Cheers
Ps I agree Oz PF currently better than British PF.
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