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PSA of 8, age 53. Should I have a biopsy?

User
Posted 13 Sep 2018 at 15:54

once again thank you all so much for your advice.  I have how had my biopsie, yes, I have prostate cancer!  So great advice , so glad this forum was here to ask.  

I have stage 2, Gleeson 7 (already becoming an expert!), and been advised either to go down the permanent seed brachy or radical prostatect.  

Si that is my next big decision.   wiuld be interested to hear if anyone has any thoughts 

thanks all so much, wish you all the very best

geoff xx

User
Posted 13 Sep 2018 at 16:31
Find yourself an eminent urological surgeon and oncologist and take note of their opinions.

Are you allowed to have a second opinion from each discipline, on, I presume the NHS? If not, pay about £250 for an opinion privately.

Once you have the full picture, you will be able to see the way forward much more clearly and formulate your treatment plan.

Best of luck,

Cheers, John

User
Posted 13 Sep 2018 at 18:47

Hi Geoff

Similar journey to you.  completely fit, well and 100% symptom free prior to first psa check (see my profile)

For me, surgery was always my preferred option and absolutely no regrets whatsoever. Choose your surgeon wisely. I also think (and was advised) that it’s important to give your decision 100% backing once you’ve made it and not to dwell on the ’what ifs’ However,  I was really tempted with brachytherapy but ultimately for me it came down to personal choice and side effect goals/expectations. Only had my catheter removed today so still have an awful long way to go and I’m taking nothing for granted and each day by day, but if a friend or family member asked me for an opinion (and surgery is an option for them) then that’s what I would advise.

Good luck with the road ahead. Everything seems to become a little easier once you have a plan.

 

 

Edited by member 13 Sep 2018 at 19:06  | Reason: Not specified

User
Posted 13 Sep 2018 at 20:28
I have T2b 3+4. I decided earlier this year to go for brachytherapy. In June I had an operation to allow me to urinate better and today I got the go ahead for brachytherapy treatment next month.

The main reasons that I have gone for brachytherapy are that it will be done as a day-case and I will not have a catheter to endure.

My PC has not changed in the last 3 years but I feel that if it did reoccur then by that point the treatment options will be improved.

Even in my time with PC the advice has gone from 'if you go for brachytherapy then you cannot have surgery later' to 'if you go for brachytherapy then you can have surgery later but the results will then not be as good as had you gone for surgery first'.

User
Posted 13 Sep 2018 at 22:48

Glenn, hi

just read your bio and your reply.  thsnk you. I can see the similaraties between our cases.  I am definitely veering towards surgery just now. Take your point about choosing your surgeon but how do you know, and ultimately what choice do you have?

geoff

User
Posted 14 Sep 2018 at 02:24
If you opt for surgery there are performance lists on-line for each surgeon. My surgeon said he would not recommend a family member to any surgeon that does less than 100 prostatectomies per year. The skill of the surgeon is paramount when it comes to length of hospital stay, complications and continence and potency post-op.

Here’s a list of top surgeons chosen by their peers:

https://www.dailymail.co.uk/health/article-5808997/Meet-best-urologists-Britain.html

User
Posted 14 Sep 2018 at 08:30

Morning Geoff

I am fortunate that my local hospital carries an excellent reputation for its urology services. From my first consultation with my surgeon I felt i was in safe and capable hands. He instilled confidence and was always honest about his outcomes, his expectation for my personal outcome, how I would feel about surgery immediately post op and the months ahead. In addition he was enthusiastic about his continence sparing technique and that was important for me. Interestingly he was also honest and positive about brachytherapy. I left the consultation knowing I was going to have surgery but knew I also had to give brachytherapy some consideration. It’s hard to answer how to choose your surgeon, I think i just knew instinctively he was the man for the job. I didn’t research him and his statistics until after I had made my decision but only out of curiosity. Of the two surgeons who perform robotics at my local hospital, he I think he fact may have performed less but I still wanted to stay with him. 

Brachytherapy was certainly attractive and again my oncologist was very convincing but it boiled down to personal choice and potential side effects outcomes in the months ahead.  I also felt comforted by the fact I could turn to radiotherapy if needed in the future if I chose the surgical route first.

From date of referral to today the urology team as a whole have been exemplary. It’s still early days but to date everything he said would or hoped to happen has happened and I will always be grateful to him and his team. Im not sure how you get referred out of area but I’m sure either people on here or your GP would be able to advise. 

One last piece of advice though - start your pelvic floor exercises now if you haven’t already done so!

Wishing you the best of luck

Glenn

 

User
Posted 14 Sep 2018 at 11:03

I have seen two of the guys in the Daily Mail top ten list and had a follow up op done by one. They are both top of thier game but the difference in charm and charisma between them was poles apart.

Thanks Chris

User
Posted 14 Sep 2018 at 12:51
One of the golden boys always appears in these lists, rated by other urologists and - according to his own website - his surgical outcomes are fantastic. However, we have had a couple of unfortunates on here who have reported that, when it goes wrong, he is very reluctant to acknowledge this or try to put it right. In one case, he allegedly refused to even see the patient again. Our Mr P cautioned us when we first talked about these golden lists to remember that some of the urologists have huge marketing machines behind them (who are perhaps motivated to put everything in a rosy light and manage or gloss over any negative reports) AND that the top urologists are unlikely to experience poor service from one of their peers, whereas the average Joe Bloggs might not have the same sway.

Undoubtedly, many of the men on this list are well known on the forum and have outstanding track records; it is also recognised that many of the men on the list are rated by their peers because they are willing to take on the difficult or complicated surgeries whereas some surgeons look like they have fantastic results because they cherrypick their patients.

Surprising but not surprising that no women made the list (if it was a list of top uro-oncologists, I can think of two women bound to be included) and I would love to meet Jonathan Aning, the only one on the list who doesn't do private work.

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

User
Posted 14 Sep 2018 at 14:39

Originally Posted by: Online Community Member
I would love to meet Jonathan Aning, the only one on the list who doesn't do private work.

A friend of mine is a recently retired Consultant Gynaecologist who never did private work and he now devotes some of his time to pro-bono medicine in Africa. He has an interesting and amusing and sometimes tragic blog:

http://yellowchuckchucks.blogspot.com/2013/

User
Posted 14 Sep 2018 at 14:43

Originally Posted by: Online Community Member
One of the golden boys always appears in these lists, rated by other urologists and - according to his own website - his surgical outcomes are fantastic. However, we have had a couple of unfortunates on here who have reported that, when it goes wrong, he is very reluctant to acknowledge this or try to put it right.

Any clues to who these unfortunates are, Matron?

I have tried to search for the nom-de-plume ‘Mr P‘ on the members’ list without success.

Cheers, John.

User
Posted 14 Sep 2018 at 15:07
Mr P is John's urologist - Mr Prostate, to give him his full title.

Capitalman is at the forefront of my mind - the other is still active so I shall leave it for him to decide whether to respond

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

User
Posted 14 Sep 2018 at 16:44

Just a cautionary note.

My consultant was one of the great and good on the Daily Mail list and he was most professional in his dealings with me on the lead up to the op. On the day itself I was made ready to go to the theatre and was told that the surgeon would be in shortly to have a quick word. A gentleman whom I had never met before duly appeared and apologised for the fact that my consultant would not be carrying out the procedure as he had forgotten when making the appointment that he would be on holiday. 

As it turned out there was a slight complication due to the presence of a hernia but fortunately the surgeon who carried out my RALP was able to deal with this whereas one of his team informed me that the big name would have needed to call on another surgeon to assist. The surgeon on the day turned out to be a lovely guy who is experienced inany areas of surgery and whose main job at the time was training surgeons to use the Da Vinci robot. He doesn't appear on the list but at least he turned up and did two ops for the price of one.

User
Posted 14 Sep 2018 at 16:57
Well, that happened to me as I was booked in for surgery with Professor Whocannotbenamed and they phoned up and said I had been bumped ‘due to an emergency’, but an understudy would do me.

I am not sure how many ‘emergency’ urological appointments can be scheduled two weeks ahead, but anyway, I waited another week for the main man who did a terrific job.

Cheers, John

User
Posted 19 Sep 2018 at 18:59
Hi Geoff,

I decided to have surgery for my cancer and I'm glad I did as, so far, my outcomes have been very good. I had my operation at UCLH in London and received fantastic care both before and after. If you can try to get a referral there as they have a great reputation and deservedly so. They also run a patient surgery school prior to your op which is very informative and can alleviate a lot of your fears regarding robotic surgery.

Wishing you all the best

Ants

User
Posted 20 Sep 2018 at 22:37

Ants, hi

thank you for that, it is all very reassuring.  I am going for the prostatectomy and have been referred to the royal Surrey in Guildford which seems to be  good place.  Glad you have had a positive experienc, gives me confidence in the system. Am busy on my pelvic floors now. Am expecting an appointment to come thr next week.  Any top tips?

best

geoff

 

 

 

 

User
Posted 21 Sep 2018 at 17:46

Hi Geoff,

Not much other then keep up with the pelvic floor exercises and get plenty of carbs into you before the op for energy and eat plenty of iron rich foods post op. After the op don't push yourself to get better take your time and allow yourself to heal both physically and mentally. Gentle exercise such as walking is also important but don't overdo it, just gradually build up to walking for an hour or so, if you can manage more then do so. My main advice is allow yourself to get well don't try to force it and allow yourself to be pampered a bit. Also once the catheter comes out make sure you do your pelvic floor exercises as often as you can, they will help you to regain your continence very quickly, I was dry within 6 weeks post op.

Wishing all the best 

 

Ants

User
Posted 27 Sep 2018 at 07:26

Lynn

i am really interested infollowing up with you on this post off line. unfortunately I don't seem to be able to messsge you directly as I haven't been here long enough.  Is there a chance you could message me so we can follow up?

thanks

geoff

User
Posted 29 Sep 2018 at 14:54

So now I have a date, 11 November.  Am doing my pelvic floors and stepping up the yoga and the cycling to get in top form. Have received my party pack from PCUK which I hsve to say I have yet to explore in detail, for now just kicked under my desk for another day. 

You have all been so helpful, I really value the advice and general comments I have received.  This is a whole new world I never knew existed z month ago, quite a journey

so will keep reading and posting, and interested to hear your stories.  

G x

 

User
Posted 29 Sep 2018 at 15:11
I have all sorts of stuff under my desk - I like to think of it as an extension to my filing system but not sure John agrees
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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