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Just diagnosed, tips for appt with surgeon? - Prostate cancer treatment

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User

Posted 22 Dec 2016 at 13:07

Hello, I'm new to all this as my husband has just had his PCa confirmed by biopsy. We've got an appointment with a consultant surgeon tomorrow afternoon - I'm scrambling to try and take in info so I can ask sensible and relevant questions. Any tips or advice? We will also get an appointment with an oncologist to discuss RT options in January.

So - background info: He's 61, had a PSA of 5.6 in October (doubled in the 4 years since his previous test). Nothing on DRE. MRI showed an 'average' sized mass on one side (no-one has been able to tell us if it's beyond the capsule - hopefully we'll hear that tomorrow). Gleason 7 (3 + 4). Left side - only 1 of 7 cores showing Ca, of less than 1%. Right side - 3 of 7 positive, 20%.

From the appointment with the urology nurse (who told us the biopsy results), sounds like he will be offered a choice of surgery or radiotherapy. Lots of research to do before making that decision....meanwhile, need to make the best of tomorrow's appointment. We're in Oxford.

Glad to have found this forum - appreciate people sharing their experience.

User

Posted 22 Dec 2016 at 15:07

Hello,

Your husband has a similar clinical picture to where I was two years ago. Please feel free to check out my profile.

Paul

THE CHILD HAS GROWN, THE DREAM HAS GONE

User

Posted 22 Dec 2016 at 17:09

Welcome to the site.

Arthur says, The Toolkit is available from the site and will help you form the questions to ask .

Write down the questions because you are bound to be flustered. Don't worry about having them written down, it's perfectly normal (for us lot anyway!) so don't need to be embarrassed about it.

You can write down short answers too to remind you because you won't remember it all.

Make sure you get info on ALL possible treatments, including non invasive at all (called Active Surveillance - careful monitoring with regular PSA and biopsy).

Make sure you have the details for his designated nurse or at least some sort of contact number for when questions pop into your head after the meeting as they are bound to do,

Best Wishes and good luck.

You've found us now and will not lack for support or help

Sandra

We can't control the winds - but we can adjust our sails

User

Posted 23 Dec 2016 at 09:56

With your statistics it is unlikely that urgent treatment will be required ( unless the docs who have more data decide otherwise ).
Do not be afraid to take some time to weigh up the options, get all the info on potential side effects and determine the best way forward for you.
It is very easy to make a quick decision you may regret in the future.

ARR

User

Posted 22 Dec 2016 at 15:46

Thanks for your replies so far. Interesting to read of your experience, Paul. I know robotic surgery is an option at our hospital, so it will be one of the options to consider. And Bazza - too late, I've already done the Google Search of Doom...... it's tough digesting the information, and I have to keep taking breaks because of getting upset! I used to work as a health journalist, so my rational mind is well capable of weighing up and analysing information. However....my 'irrational mind' is rather freaked out right now! I know it will calm down and things will come into focus in time. Just maybe not by tomorrow!

User

Posted 22 Dec 2016 at 15:57

Hi Janet

Bazza spot on. Keep it simple and get hubby to clarify exactly what he needs to know at this stage. See http://prostatecanceruk.org/prostate-information/treatments/surgery

Plenty info on this site and you should be given a lot more. I meet a urologist not a surgeon. Loads of time. Ie months not days to both make informed decision. Remember do ask his advice on active surveillance. I never to this day have found detailed analysis of my MRI to biopsy or which zones of prostate contained lesions. It was 3 months from dx to da vinci for me. I have found that if you don't ask little info is volunteered. I only found forum post op.

Best wishes

Gordon

User

Posted 22 Dec 2016 at 16:42

Hi Janet,

Welcome, you will get a lot of support and encouragement from people here. Feel free to ask any questions you want. I suggest that you download the toolkit from the publications section on this website. It will be better if you both go to the appointment as two pairs of ears are better than one!

Update your profile as you go along as it helps people understand your situation.

Best wishes,

Arthur

User

Posted 22 Dec 2016 at 19:13

HI there

First time of this forum and this initial message resonated with me to comment. Living in Oxford I have just undergone prostate removal at the very hospital I am guessing Janet's husband will use (The Churchill). Needless to say the team was fantastic and I was well looked after.

In terms of options...I was diagnosed 4 months ago and underwent various test (my gleeson score was also 7 = 4+3). So things I was made aware off...first up...the hospital was obsessed with my flow rate. If you pass urine below the magical score of 12 then bracatherapy wont be offered.

I was offered external radiotherapy, ultrasound therapy or surgery. Having seen a consultant and then the surgeon both agreed bracatherapy was off the table (urine flow was only 12.1). External radiotherapy meant 5 weeks of 5 visits per week...which would be a pain because of parking in Churchill Hospital. My consultant also warned me that any form of radiotherapy limits future interventions owing to internal complications following radiotherapy and possibilities of future cancers.

I could have had ultrasound as an experimental intervention but the long term consequences are unknown.

So everything pointed to surgery...being only 50 both the consultant and the surgeon both implied surgery was best. Why for me? My age, no further internal damage and possibilities of removal of other organs in the future if the cancer came back. The downsides...in Oxford the surgeons seem keen to remove erectile nerves. I lost mine on my right side (where my prostate cancer was) but the kept those on the left. The reason given was to avoid any cancer cells lying there and waiting to spread. Obviously this has issues regarding erections and something you may wish to discuss with your partner in an open and frank way. (Me and my partner did).

Its early days for me but happy with my decision to have surgery. I know my cancer has been removed from my body and every new day is a blessing.

When you meet your consultant and then the surgeon I would just suggest being open and frank with them. Face upto your worst fears and express them. I found the whole Oxford team to be highly emphatic and supportive in helping me make a decision.

Also...Oxford urology dept has a prostate cancer survivors group who are their to offer support and help. Havent got the details but the urology dept will have.

Good luck.

User

Posted 23 Dec 2016 at 19:40

So - reassuring news from the appointment. Grade is T2a or b, contained within the prostate (as far as can be seen from the scan). Consultant thought that weighing up all the info, there's no need to rush into anything, could even opt for Active Surveillance initially. We're both relieved that there's no pressure to decide quickly, so we can research properly and really weigh everything up. The consultant was great too - really took his time, responded to our questions and listened well. Really impressed. Phew. Christmas is now looking a little brighter!

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User

Posted 22 Dec 2016 at 14:00

Hi there,

Sorry to have met you under these circumstances. We are getting our diagnosis this afternoon - we know it's cancer but no detail.

On my list for expected results is a 'T score' I am very new to it all but read about it here on this site - T1/T2 a /b/c etc

I am sure someone a lot more experienced is going to give you better advise than I could but it's on my list of things I'm expecting to hear, so thought I'd share.

My husband is 53 and has no symptoms at the moment.

Good luck with your decisions

Clare

User

Posted 22 Dec 2016 at 15:07

Hello,

Your husband has a similar clinical picture to where I was two years ago. Please feel free to check out my profile.

Paul

THE CHILD HAS GROWN, THE DREAM HAS GONE

User

Posted 22 Dec 2016 at 15:12

Don't Google anything.

Ask what treatment options you have. Most importantly, write all your questions down beforehand and write down the answers. The appointment will pass in a haze and recording these answers will help you when you get home.

Best of luck.

Bazza

User

Posted 22 Dec 2016 at 15:46

User

Posted 22 Dec 2016 at 15:57

Hi Janet

Bazza spot on. Keep it simple and get hubby to clarify exactly what he needs to know at this stage. See http://prostatecanceruk.org/prostate-information/treatments/surgery

Best wishes

Gordon

User

Posted 22 Dec 2016 at 16:26

Hi Janet

I posted my reply before reading your last. Neither me or wife had any idea what Gleason was when we had our first meet, I assume like many many others.

I had non nerve sparing . Advised.

Only post op were we told capsule being breached. Given clear margins.

You will find the more you research the more you don't know and the complex it becomes.

Everyone's journey is unique and PCa very unpredictable.

Gordon

Edited by member 22 Dec 2016 at 16:28 | Reason: Not specified

User

Posted 22 Dec 2016 at 16:42

Hi Janet,

Update your profile as you go along as it helps people understand your situation.

Best wishes,

Arthur

User

Posted 22 Dec 2016 at 17:09

Welcome to the site.

Arthur says, The Toolkit is available from the site and will help you form the questions to ask .

Write down the questions because you are bound to be flustered. Don't worry about having them written down, it's perfectly normal (for us lot anyway!) so don't need to be embarrassed about it.

You can write down short answers too to remind you because you won't remember it all.

Make sure you get info on ALL possible treatments, including non invasive at all (called Active Surveillance - careful monitoring with regular PSA and biopsy).

Make sure you have the details for his designated nurse or at least some sort of contact number for when questions pop into your head after the meeting as they are bound to do,

Best Wishes and good luck.

You've found us now and will not lack for support or help

Sandra

We can't control the winds - but we can adjust our sails

User

Posted 22 Dec 2016 at 19:13

HI there

I could have had ultrasound as an experimental intervention but the long term consequences are unknown.

Its early days for me but happy with my decision to have surgery. I know my cancer has been removed from my body and every new day is a blessing.

Also...Oxford urology dept has a prostate cancer survivors group who are their to offer support and help. Havent got the details but the urology dept will have.

Good luck.

User

Posted 23 Dec 2016 at 09:12

Thanks Geordie Boy, really helpful to hear about your experience. We're in the lucky position of actually being walking distance from the hospital - something we've joked about in the past....well, now those black jokes are coming true...

His flow rate is apparently very good, so if staging is ok, he would in theory be a candidate for brachytherapy. Good to hear that you had such a positive experience with the Oxford team. We'll be armed with various frank questions (written down!) this afternoon.

Good luck with your own recovery.

Janet

User

Posted 23 Dec 2016 at 09:56

ARR

User

Posted 23 Dec 2016 at 10:25

Thanks, Alan - it's too easy to get into a panic! Critical info to get this afternoon is whether it's T2 or T3 (we'll feel more pressure to make a quicker decision if T3).

User

Posted 23 Dec 2016 at 16:04

Good luck Jan

User

Posted 23 Dec 2016 at 18:20

Glad to help. The thing I found helpful as well was talking openly and frankly with my partner about all aspects of the treatment options and the consequences on our intimacy. Although this was difficult my partner was open and frank and this helped us mutually make the decisions we made.

What ever decision you make, will be the right one.

User

Posted 23 Dec 2016 at 19:40

User

Posted 23 Dec 2016 at 22:43

That is great news... Definitely best not to rush in my opinion... Question everything is my view!

Audit report published last week is a good read re active surveillance .., it's in the newson this sote.

Have a good Christmas

Clare

User

Posted 29 Dec 2016 at 10:53

I hope you have been able to have a good Christmas and PCa has not dominated.

I was diagnosed with Gleason 3+4 T2c in September 2016 just before my 50th birthday so similar to your husband. I was given the choice of surgery or Brachytherapy. There was no pressure on making a decision (in fact my surgeon and oncologist said they wouldn't do anything for six weeks after the biopsy anyway) and the medical team didn't lead or push me one way or another.

There is already some great advice but I would add a few extra points:
1) Don't panic - there is lots of support and treatments available
2) Make sure you accompany your husband to the consultations. It is all a blur and it really helps to have two remembering what was said
3) Take notes and keep a file of useful information/print-outs, I have had to go back to this a number of times
4) Explain your decision making process/criteria to the medical team and each other
5) Ask lots of questions and repeat the same questions to each of your medical team and at each appointment; compare answers and ask for clarification. There is no such thing as a dumb question

With patience, research and lots of talking I am sure you and your husband will make the right decision for you.

Good luck

User

Posted 31 Dec 2016 at 13:36

Hi went all through this a few weeks back and I was also given various options. At the time my PSA was 32 rising to 47 before hormone therapy and after two weeks of hormones my psa dropped to 11. Gleeson was 7

.The options i was given was surgery/radiothrapt/brachythrapy. However the Oncologist ,Surgeon, or the brachaytherapist would not give me a definative answer as to what treatment to have and the information that they give me was basically what they had photocopied from this website and others which is not specific to mine or your particular case.

Yes make a list to ask the syrgeon but if you want to know statistics of each of the treatmant options you can find his on the NICE website but it can be frightening as it is black and white, and again is academia in operation.

I have two friends that have opted for the surgery one has had no problems whilst the other is having a lot of urological problems one year on from the robotic procedure.

I count myself as lucky as the surgeon i was dealing with had dealt with a mild kidney complaint that i had some time ago and after at first being non commital he informrd me that my particular case was discussed at the oncologist meeting the previous week and the doctors at that meeting had leaned towards the radiation therapy(with Brachaytherapy)tacked onto the end of the radiation. So this is what i plumped for.

Before deciding anything please immerse yourself int the information available on the various websites and also the side effects of each of the treatmants (unfortunatly they all have some side effects), as these also helped to determine my particular path (as i still have to work)

So read and read again and see if you can lead your surgeon into telling you what was discussed at the oncologist meeting, or even what treatmant he would go for in your situation (good luck with that one)

Do not be scared of any questions you may have no matter trivial as they have heard them all before.

Worrying times i know and luck has not got much to do with it so heres to a good consultation and a successful treatment, let us know how you get on

Bob.

Edited by member 31 Dec 2016 at 13:47 | Reason: Not specified

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