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User

Posted 05 Apr 2016 at 16:54

I'm new to this site and need reassurance that what's happening is OK - Communication with my local.service is difficult. I had my first PSA test in December as part of a health check - it was 13 and I was referred to the local hospital

I saw a doctor on 7th Jan and had a biopsy 5 days later - so far so good. The result was Gleason 3.4 and I was advised that treatment was needed.

Since then I've had an MRI, 2 scans, an X-ray and another biopsy (last week) and still not seen my consultant nor received a referral to the treating hospital (they don't do radiotherapy or prostrate surgery at my local).

The second scan was to investigate something 'unusual' found on the MRI and took place eventually on 30th March.

Is this timescale usual - it seems a long delay and waiting for progress is weighing heavy - and any info I get, I have to call up for - scan results etc.

User

Posted 09 May 2016 at 09:25

It's not a pretty sight but it should gradually shrink again. I have to admit that it ached a bit around the testicles for about 6 weeks but you just accept that and get on with life. Everyone will have different experiences with incontinence issues post catheter removal. It took me about 5 months to get back to relative normality but I just took the approach that I can either feel sorry for myself or adapt, use the aids that available and get on with stuff.

Anyway, all the best and keep a sense of humour - I am convinced that laughing at yourself aids recovery.

Kevan

User

Posted 13 May 2016 at 12:42

Hi Mazdad

HAPPY BIRTHDAY and WOW what a birthday present. I was wondering how you got on. So chuffed for you - that is truly wonderful news. Enjoy you day.

I am just off to Oxford for session 4 of my 33 RT appointments. Early days but going well so far.

Kind regards,

Kevan

User

Posted 13 May 2016 at 14:19

Happy Birthday.

Good news on the incontinence front - hope it continues.

Good luck on 24th June.

KRO

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User

Posted 05 Apr 2016 at 18:04

Hi Mazdad and welcome! You don't say if you are being given anything in the meantime ie. hormone therapy. To give you an idea of my fiance's timeline thus far, he had a PSA blood test in the week of Christmas (2015) and was seen by a Urologist by New Year who then ordered a biopsy (his PSA was 89.5). The biopsy showed a Gleason score of 9 with all 10 samples taken positive for cancer (about 77-78% each one). We saw his Urologist Jan. 22nd and due to his high Gleason score and PSA he was immediately put on hormone therapy there and then. A bone scan and MRI were ordered. The first took place at the very beginning of February and the second took place nearly 3 weeks after that. My fiance then saw the Urologist again towards the very end of February. We were concerned ourselves about time frames but were told that his being on hormone therapy meant that he was having what they called the gold standard of treatment anyway. (Presumably that being for someone in his position). It was then that we found out he has extensive bone mets and lymph node involvement too. A multi - disciplinary team reviewed his case prior to this meeting and on the back of that he has been referred to an Oncologist for what will happen next. He doesn't go to that until next week (so it has been about 6 weeks of wait to see the Oncology Department). This whole process will have taken around 3 and 1/2 months from the blood test to the time we get to see the Consultant. Firstly, I would say if they have given you hormone treatment, then this will be helping to bring your PSA down in the meantime. Secondly, if they haven't then perhaps they are needing all those scan results in first? Thirdly, I think you have to be proactive and get some reassurance on this. My fiance was assigned a specialist cancer nurse at the hospital - were you? Could you contact them to see where things are and if things are going along as they should be? I certainly would chase up the results of that last scan. Hope this helps. (Ps. Perhaps one of the nurses on the helpline of this site could also help you too?).

Edited by member 05 Apr 2016 at 18:07 | Reason: Not specified

User

Posted 05 Apr 2016 at 18:26

Hi Mazdad, first of all welcome to this site that no one wants to be on but now you are here you will find that there are lots of us that will give good advice and information so that you can make decisions as it is only you that can make them.

All the people on this site are either patients, other halves(OH's) or their family and we know what you are going through from now until diagnosis and on into treatment. One extremely good thing is to download, from publications on this site,or telephone to get the "toolkit" which will help to get your head around whatever treatment you will be offered.

I was diagnosed in Feb 2015 with a PSA 63 Gleason 3+4=7 stage T2 aggressive PCa confined to the prostate. I started Hormone Therapy(HT) for 2 years and had Radio Therapy (RT) 37 sessions that ended Nov2015. Before RT started my PSA went down to 0.5 and since finishing has gone down to 0.01 which is undetectable now but will be tested every three months.

The waiting for results and answers takes it's toll but try not to worry (easier said than done I know) your multi disciplinary team(MDT) will review your results and offer you a treatment plan. You will get appointments to see specialists and it will be better for you to take a pen and notebook and someone else with you to help understand and remember what you are told.

What ever treatment is offered has side effects and possible long term issues so check out all the options and if there is anything at all that you need to find out you can ask on here, no subject is taboo, or you can call the specialist nurse on this site. They are extremely knowledgable and well worth talking to.

There will be someone else on here with more knowledge than me that will reply and give other helpful answers.

Stay positive and talk to people as a problem shared is a problem halved and it might just keep you sane.

Best wishes to you, regards Chris/Woody

Life seems different upside down, take another viewpoint

User

Posted 05 Apr 2016 at 19:42

You might want to take a look at this page:

http://www.nhs.uk/choiceintheNHS/Rightsandpledges/Waitingtimes/Pages/Guide%20to%20waiting%20times.aspx

You will need to cut and paste it into your browser as I cannot paste it as a link.

User

Posted 06 Apr 2016 at 05:50

Hi
I was diagnosed march appointment with urologist inside 2 weeks then had a biopsy results where 2 weeks later
Next appointment was a oncologist in june
Then had MRI bone and CT scans
It does seem now as though more men are having scans before seeing onco

I think you need to get the Toolkit from this site as it will explain in detail the options which may be available
When u see consultant dont forget pen n paper for notes and list of questions

Regards
Nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User

Posted 06 Apr 2016 at 05:52

Mazdad
What county do you live in maybe someone in your area
Please dont name Drs

Regards
Nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User

Posted 06 Apr 2016 at 08:43

Thanks for your responses, I see I'm at the start of a long process.

I''m not receiving any treatment at the moment, I think they think there mey be a second tumour not related to prostate cancer, hence the second biopsy ( the radiologist was talking to a trainee and I overheard).

I'm going to see my GP to see if he can get any communication started.

User

Posted 06 Apr 2016 at 09:28

Mazdad, sometimes it is easier to telephone the secretaries of the relevant specialists to chivvy them along a bit and you end up speaking to someone that may be able to tell you some information as to when an appointment is likely or indeed you may well be able to make once there and then, if the PA is not too godlike!

Still worth using GP to send letters as well, be proactive with everyone, it is your body and your life.

Cheers Chris/Woody

Life seems different upside down, take another viewpoint

User

Posted 12 Apr 2016 at 09:24

Going to treatment hospital on Friday to talk about brachytherapy mainly (not sure I'm eligible yet), but also surgery. Have done a lot of research online but not had guidance from local hospital

User

Posted 30 Apr 2016 at 13:35

Due to have robotic surgery next week. apprehensive but impatient to get it over with and to start dealing with any issues. I have been open with friends/ family and everyone supportive. I sing and dance but obviously I'll need to pause these for a while.

User

Posted 02 May 2016 at 17:02

Good luck with the op Mazdad - really good that this is an option for you as this will be with the aim of curing your cancer. (Hopefully will soon be something to dance and sing about literally!).

User

Posted 08 May 2016 at 18:48

Thanks. Surgery done also with bilateral lymph node bisection. Some 6 hours in surgery so will take some getting over, but still home following day and doing well though looking forward to losing catheter on Thursday.

User

Posted 08 May 2016 at 20:03

Hi Mazdad

It sounds as though the surgery went well but take your time with recovery. It is major surgery and bits will have been moved about so don't be shy about having a rest when you feel like it. It is good to stay active but in increments so that you give yourself the best chance of the speediest recovery.

Wishing you well with the catheter removal and your continuing recovery.

I am 9 months in front of you and had what I believe was a good experience post op. There were incontinence issues but nothing insurmountable.

Kind regards,

Kevan

User

Posted 09 May 2016 at 08:32

Thanks Kevan, I'm expecting a bit of damp as I had some extra bits done. I hadn't expected so much bruising! I,d seen pictures of 6 symetrical holes, very neat! I look like I,veg been kicked by a horse with sharp hooves. My body soon tells me when I' m trying to do too much too soon

User

Posted 09 May 2016 at 09:25

Anyway, all the best and keep a sense of humour - I am convinced that laughing at yourself aids recovery.

Kevan

User

Posted 10 May 2016 at 10:53

I'm sure your right. My testicles are quite swollen - to do with the lymph node removal I understand but I'm using a truss I used 40 years ago from a sports injury to ease things. My wife and I are having a good laugh about a lot of the ludicrous minor events - never getting out of the chair in time to answer the phone, etc

User

Posted 13 May 2016 at 09:44

Had catheter out yesterday and couldn't believe it - dry immediately and dry last night although I got up 3 times. It's my 67th birthday today_best present ever! Next hurdle back to hospital on 24th June for a team meeting to discuss what's next.

User

Posted 13 May 2016 at 12:42

Hi Mazdad

HAPPY BIRTHDAY and WOW what a birthday present. I was wondering how you got on. So chuffed for you - that is truly wonderful news. Enjoy you day.

I am just off to Oxford for session 4 of my 33 RT appointments. Early days but going well so far.

Kind regards,

Kevan

User

Posted 13 May 2016 at 14:19

Happy Birthday.

Good news on the incontinence front - hope it continues.

Good luck on 24th June.

KRO

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