Hi, i'm new here

In the waiting stage for an agreed prostatectomy. I am 58 years of age. Gleason score of 3+4. Initial PSA of 6.5, followed by another test of 7.5 two weeks later, post biopsy. Surgeon and his team provided lots of information and concluded he maybe able to do nerve sparing, but not guaranteed. Stated after biopsy that it was not totally conclusive and removal of the prostate will give a clearer picture? I am happy with the current care I am receiving although somewhat anxious with the waiting involved. I am 2 months in to a 3 month wait. I live in the north west and will be attending Arrowe Park for the operation. The DaVinci robot will be used and the surgeon and his team are very experienced. Bit worried as had severe stomach cramps 2 weeks ago and was passing a lot of blood in my stools. Have now been referred for an urgent colonoscopy. I have found it really helpful to keep in touch with Macmillan support networks, who have been offering health and well being advice, and complimented this service with fitness groups

[Tall_Allen]

I trust you have done your due diligence and also talked to other kinds of specialists. Here are some questions to ask your Uro (as applicable) and to ask yourself:

pcnrv.blogspot.com/2017/12/...

pcnrv.blogspot.com/2017/12/...

[Hidden in reply to Tall_Allen]

Thank you for your response. Will definitely look further in to this, and keep you posted

[ASAdvocate]

Have you only consulted with urologists, who are surgeons? Of course, they will steer you to surgery. You MUST do some research and get second opinions, especially regarding SBRT and also proton therapy. Their non-recurrence rates and low side effects are superior to surgery.

You have a reply from Tall Allen, who is highly informed on comparative prostate cancer treatments. Carefully read his links, and...good luck to you.

[Hidden in reply to ASAdvocate]

Thank you, I am probably guilty of burying my head in the sand. 1st step was joining the group. It has encouraged me to look at all options available. Will keep you posted

[Hidden in reply to Hidden]

Hi, I see you live in the UK and presumably under the care of the NHS. If so the treatments offered to you will have been considered by a multidisciplinary team as the most suitable for you. The options offered will also be the most commonly available.

I also hope that you did research the pros and cons of each of the options available to you, asked your consultant and will have been given the name of a Clinical Nurse Specialist CNS who you can contact at any time.

You may come across men on this site from the US who will tell you that specialists are biased towards a particular treatment. They seem to be biased themselves. I don't believe this is true of the NHS.

Surgery is probably not your only option, but urologists are not necessarily surgeons and those that are may not be allowed to carry out robotic surgery. As you probably already know the urologist you saw for investigations and diagnosis may not even work at Arrowe Park.

At Arrowe Park it seems there are two prostatectomy surgeons Mr R Nambirajan and Mr M Kumar. All the other "urology" surgeons do NOT do prostatectomies. Furthermore, NHS surgeons etc are not paid for what they do, they are just paid according to their grade, unlike specialists in the US. The treatment options are decided by a multi-disciplinary team, not by an individual, you are told all the options and it is entirely up to you to choose your preferred treatment.

Other organisations you can contact to reassure you that you've made the right decision for you are Prostate Cancer UK

prostatecanceruk.org/‎

they have a helpline you can phone and talk to their Clinical Nurse Specialists.

Macmillan Cancer Support MCS also offer information and support either through their web site, a helpline and in some parts of the country local information and support centres where you can drop in and get support, information or just talk. They will be able to give you information about local cancer charities and prostate cancer support groups and your CNS should have already done this.

macmillan.org.uk/‎

Macmillan can support you during your treatment and help you deal with any consequences after.

Macmillan centres and porstate cancer support groups

If you go to

macmillan.org.uk/in-your-ar...

you will see a list of all of them in the Wirral, Liverpool, Cheshire and West Lancashire areas

if you go to

macmillan.org.uk/in-your-ar...

Preston, Blackpool, Fylde, across to East Lancs and up to South Cumbria.

If you indicate where you live I could give you the details of the nearest to you.

Let me know, best wishes.

[Hidden in reply to Hidden]

Hi, me and my wife went on holiday to discuss our options (august) Prior to this we had met with Mr Nambirijan. I had already made my decision to proceed with prostatectomy. Upon returning from holiday we met up with nurse specialist. I have been attending maggies for support (clatterbridge) I also attend classes at the gym, all supported by Macmillan. I have met with Mt Nambirijan again who has referred me for further investigations for rectal bleeding. feel really blessed to be receiving such great care from our NHS. Initial pathway flowed smoothly and quickly, however I am anxious to undergo the surgery and move forward. brilliant information provided from yourself, and really appreciated

[Jeff85705]

Prostatectomy has the advantage of 1) removing the prostate 2) Surgeon microscopic view of the surrounding area including lymph nodes, seminal vesicles, and nerves, and 3) pathologist dissection of the removed gland. In my case I was 3+4=7 Gleason preop, and 4+3=7 postop, Stage T2c. A PSA 2 weeks post-biopsy seems odd to me. Could the biopsy procedure itself have temporarily increased PSA? I don't know. You should also be getting second opinions if you have not already: clinical oncologist specializing in prostate cancer, and radiation oncologist.

[Hidden in reply to Jeff85705]

Hi, good point, at the time I didn't really question why the reading was higher the 2nd time? Will speak to my GP during my next consultation this coming Monday, will keep you posted

[Hidden in reply to Jeff85705]

I agree that a PSA test so soon after a biopsy was unwise. The level was almost certainly raised by the procedure.

Other than that, I think the responses this poor man has had from all of you from the US shows a profound ignorance of the UK health care system.

Remarks about second opinions, oncologists, biased urologists etc are all inappropriate.

Cases of prostate cancer in the UK are automatically considered by a MULTI-DISCIPLINARY TEAM which more or less covers all of the above.

[Jeff85705 in reply to Hidden]

Well, excuse me for being "ignorant of the UK health system," but people here don't usually say what country they are from, so we speak from our own experience. It is unfortunate that you fail to grasp that. It is also unfortunate that you in the UK don't have the opportunity for a second opinion. I don't care if your system always uses a "multi-disciplinary team." Can you choose which team? If you can't then you are limited, "more or less." Just because you are proud of the NHS, and for good reason, don't think that it is all perfect. We can all learn from each other. That is not "inappropriate."

[CherylBoca]

Your bio could be an exact replica of my husbands except he was 52. Went for the surgery. 7 years later - no detectable PSA. His nomograms (statistics that are computed every so often post-treatment) show his 15 year survival rate from prostate cancer now at 98% (as computed today - year 7 cancer free). He did end up having some extracapsular extension (into the neck of the bladder) but no escape from the surgical margins. He was T3, not T2, post surgery. So - yay - it was a great success. And scary - because the cancer was further along than suspected. But he was left with permanent ED. He has other posts here about trying everything. Just wasnt going to get it back. They did nerve sparing but one nerve was surrounded by gobs of scar tissue from a 2 previous hernia surgeries. You may be far luckier in the ED department. But, you know what - he's cancer free!

[Hidden in reply to CherylBoca]

Brilliant post, lovely to hear such a positive and informed version of your husbands experience. Probably like a lot of other men at my stage I am not really focusing on the ED, although I am sure it will be at the front of my mind "post op". Like a lot of posts on here, inspirational!!