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PC diagnosis - Advice / Support

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User
Posted 08 May 2015 at 16:29

Hi ALL,

 My name is Micky, i,m from sunny Essex, (OK I LIED ABOUT THE SUNNY BIT LOL)...

  i have in the past fortnight been diagnosed with PC, although it is localised within the prostate i am informed, but have been told that because my score is 3+3, that because of my psa at a rising rate over the last two years too 18.5, alll treatment options should be considered, i have an appointment with the oncologist team next week and was wondering if anyone here can give me advice before hand?..... the urology nurse i spoke with last week suggested i might want to choose brachytherapy and hormone injections and gave me loads of pamphelts/books to read, but i am not sure about any of it all...

  too be honest, my first reaction is, "get this out of me now", but, like everything i guess that has side effects...

  any advice would be gratefully receieved so thanks in advance.

        cheers:

            Micky65

 

User
Posted 10 May 2015 at 13:26

Hi, thank you everyone for your kind words and sensible comments,
its a strange thing this prostate cancer stuff.........lots of information, but only myself can make the final decision when its needed i guess.
i do admit that i try to forget it and it will go away kinda thinking, but, ..more sensibly i am coming to terms with it, and will make the "right" choice i hope,.............like all men in this conundrum, we think bout the bad bits (ED, incontinence, etc.)............ewwww.
but best foot forward,
thanks again:
Micky65

User
Posted 22 Jul 2015 at 21:00

Hiya,s

   just an update, have been on biclutamide for five weeks now, and tamioxfen to stop the chance of me growing "moobs"......

 hot flushes are a nightmare, but been told too stop inbibing alcohol, should help...

 had  mri scan monday the 20th, and my High dose Brachy is scheduled for the 1st october........(the day after my 66th birthday so i guess i wont be on the "lash" for the first time in donkeys years on my birthday........think of all that money i,ll save ,lol.

        cheers:

           Micky

 

User
Posted 22 Jul 2015 at 21:50

Hi Micky
Good to hear from you. I guess the scan will show if the cancer has been halted or slowed ? Good luck with the brachytherapy. The guy opposite me in hospital had just had that done and he was absolutely fine and no pain.
As for stopping the alcohol , c'mon man be sensible on your birthday. Go on the lash as normal and get some electric fans around you
Chris

User
Posted 23 Jul 2015 at 11:08

I could be wrong Mo. It has been known. Ask my other half!!!

We can't control the winds - but we can adjust our sails
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User
Posted 08 May 2015 at 18:41
Hi Micky

Welcome to this site where you'll receive a lot of good advice and support.

When you meet with the Oncologist next week try to prepare some questions and take a notebook to take notes as it's not always easy to remember everything. My wife came with me and picked up on things I didn't, it might be helpful to have someone with you.

You can either download or order the Toolkit from the publications section on this website. This will be very helpful.

Best wishes

Arthur

User
Posted 08 May 2015 at 18:56

Hi Micky,

Your first reaction "get this out of me now" is a common one.

You're right in saying that there are side effects to each treatment, some are immediate, whilst others become apparent over the course of time. You also need to take your physical health into consideration.

So not a decision you would want to rush. The best treatment option may be the one which takes a little more time to complete.

Arther made some good points. Listen to your urologist, read the toolkit and go with a list of questions (and a pen!)

Flexi

User
Posted 08 May 2015 at 19:02
Hi Micky

My husband was diagnosed earlier in the week, his PSA is 19.7 and he is 4+3. I found the toolkit mentioned by Arthur a great help, I also rang one of the PCUK specialist nurses on 08000748383 as I had a few questions and she had all the time in the world to explain things to me and suggested a few questions to ask.

Oh by the way you will find a quite a few wives on here, I like to think of myself as an unpaid researcher!

All the best

Maureen

"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne
User
Posted 09 May 2015 at 17:52

Hello Micky and welcome from me too.

The others have said it all really. Do your research, don't rush or allow yourself to be pushed into a decision you are unsure about.
There are a number of men on here having undergone Brachytherapy, my husband being one of them. If you click on the name under the icon it will lead you to a member's profile where you can often read their history.

Best Wishes
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 09 May 2015 at 20:27
Hello,

In November my PSA was 7 and subsequently increased to 8. My biopsy showed Gleason 3+3 right side 4+3 left side. T1C.Scans indicated that no spread but the left side of the prostate , although contained, was showing signs if breaking out of the capsule.

I listened to the surgeon and oncologist but really my mind was already made up to have surgery. I am 58 and thought young enough to recover.

Had laperascopic prostatectomy on 30th March 2015. A little pain and two nights in hospital. 5 weeks on feeing fine but get tired easily. Had catheter removed after two weeks. I am having incontinence problems but it's early days and I am seeing an improvement daily.

All I can say is listen to all the advice you can before making your decision. No one will make it for you it has to be your choice.

I will know more about how succesful the op has been when I meet the surgeon again in June for feedback.

Paul

THE CHILD HAS GROWN, THE DREAM HAS GONE
User
Posted 10 May 2015 at 13:26

Hi, thank you everyone for your kind words and sensible comments,
its a strange thing this prostate cancer stuff.........lots of information, but only myself can make the final decision when its needed i guess.
i do admit that i try to forget it and it will go away kinda thinking, but, ..more sensibly i am coming to terms with it, and will make the "right" choice i hope,.............like all men in this conundrum, we think bout the bad bits (ED, incontinence, etc.)............ewwww.
but best foot forward,
thanks again:
Micky65

User
Posted 25 Jun 2015 at 12:18

Hi, Again,

   finally met all the oncologists and had all the options put in front of me,.....

  have decided to go with High dose brachy,......

  sobeen described biclutamide 150mg, and Tamoxifen, the first to shrink the prostate, and the second to stop hot flushes, which i thought tis ok, i,ll just open a window, lol.... but doing ok, got to have this for six months approx. before i can have the brachy.... seems a long time to wait, but i guess they know best!!!

 the only other option i really had was prosectomey, thought that would be my choice til i was told about the bit about incontinence etc.........

    thanks:

           Micky65

 

User
Posted 25 Jun 2015 at 12:57

Hi Micky I'm glad u have made a firm choice and are confident with it. I had the HT / HDR Brachhy / RT route taken off me at last minute and am actually sat in hospital post RP. For me it was going to be 3 yrs Bical tabs ( and for 3 mnths prior to Bracchy ) , then 15 sessions of RT. I THINK THE PLAN IS TAILORED to the individual. Very best of luck with it.
Chris

User
Posted 22 Jul 2015 at 21:00

Hiya,s

   just an update, have been on biclutamide for five weeks now, and tamioxfen to stop the chance of me growing "moobs"......

 hot flushes are a nightmare, but been told too stop inbibing alcohol, should help...

 had  mri scan monday the 20th, and my High dose Brachy is scheduled for the 1st october........(the day after my 66th birthday so i guess i wont be on the "lash" for the first time in donkeys years on my birthday........think of all that money i,ll save ,lol.

        cheers:

           Micky

 

User
Posted 22 Jul 2015 at 21:50

Hi Micky
Good to hear from you. I guess the scan will show if the cancer has been halted or slowed ? Good luck with the brachytherapy. The guy opposite me in hospital had just had that done and he was absolutely fine and no pain.
As for stopping the alcohol , c'mon man be sensible on your birthday. Go on the lash as normal and get some electric fans around you
Chris

User
Posted 22 Jul 2015 at 22:50
Micky

I love Chris's reply just also remember to drink loads of water after the lash, and hope your seed implant is a little after 6am !!

I wish you all the very best

xx

Mo

User
Posted 23 Jul 2015 at 08:03

Good luck with your HD Brachytherapy Micky.

Put the money saved from your birthday "lash" towards a lovely weekend/holiday after the treatment finishes. A little reward!

Mo I think Micky's Brachy is the temporary "rod" inserted then removed, unlike the permanent seeds. That's what I understand from his original High Dose Brachytherapy comment anyway.

All the best Micky.

We can't control the winds - but we can adjust our sails
User
Posted 23 Jul 2015 at 10:27
Sandra

thanks for pointing that out for me, I know very little about Brachy as it is not a treatment I have had any involvement with either as a family member or as a friend of someone with PCa or in my other involvements with PCa. Its one of the reasons I stay out of any debates on how it is chosen, how it is given and what the after effects are. I guess I will learn all about it if I ever need to.

My comment was therefore presumptious as I had not read Micky's full profile

Micky I wish you well for your Brachy treatment. In hindsight maybe Sandra also has a very valid point, save the money and treat yourself after the procedure.

xx

Mo

User
Posted 23 Jul 2015 at 11:08

I could be wrong Mo. It has been known. Ask my other half!!!

We can't control the winds - but we can adjust our sails
User
Posted 01 Oct 2015 at 20:21

Hi All,

    today the 1/10/15 i have been to see the oncologist re: the date for my HDR Brachy date, and been told i have to be on hormones (biclutamide and tamioxfen) for another two months before my admission date of the 1/12/15 for the procedure,.....disappointed with the delay seeing i had an offer last month (23rd) to go early as someone had dropped out and being told my admission date would be this month after i turned it down to go early...... seems like i have been put to the end of the queue??.......

  having said that my psa has dropped to 9.45 from 17.8 when i started the hormone tabs in june, so have to be patient and wait now, very frustrating tho.....

    thanks for all the support as always:

       Micky......

      

 

User
Posted 01 Oct 2015 at 23:21

Maybe they are delaying until December in the hope that your PSA will drop further Micky - for the brachy to be most effective, you need the cancer cells to be weakened as much as possible.

I am sure the time will fly

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

User
Posted 01 Oct 2015 at 23:25
Originally Posted by: Online Community Member
Hi, Again,

finally met all the oncologists and had all the options put in front of me,.....

have decided to go with High dose brachy,......

sobeen described biclutamide 150mg, and Tamoxifen, the first to shrink the prostate, and the second to stop hot flushes, which i thought tis ok, i,ll just open a window, lol.... but doing ok, got to have this for six months approx. before i can have the brachy.... seems a long time to wait, but i guess they know best!!!

the only other option i really had was prosectomey, thought that would be my choice til i was told about the bit about incontinence etc.........

thanks:

Micky65

Micky, it seems that you haven't been put to the back of the queue at all - when you posted in June, your treatment plan was 6 months of hormones before brachy so 1st December is right on target.

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

User
Posted 30 Jan 2016 at 15:27

HI all,

    I had my prostate HD surgery on the 8th December, and spent 5 days in southend hospital before being allowed home.........

  on January the 8th, i had my first check up and PSA blood tests...........8.7  before the surgery.......... 12.4 after the surgery...hmmm! the consultant said thats not its supposed to be......and i have to have biopsy next week and had mri scan on wednesday this week.........

  he has said it could be just a "flare" number because of the surgery, but was a little concerned that i,m still bleeding a little almost two months on...............

    not worried tho, just a nuisance now, lol.

        anyways i,ll let you know how it goes in the next couple of months

               Cheers:

                Micky..

User
Posted 30 Jan 2016 at 16:13

Hello Micky, sorry it hasn't gone textbook style but fingers crossed eh that surgery has cause the lack of decrease in the PSA.

Good too that you've already had the MRI , given that you'll be having the biopsy next week. I hope all goes well for you.

No real point in worrying is there? It would appear your consultant is on the ball and not letting things lie. He wants answers as much as you do it seems

We can't control the winds - but we can adjust our sails
User
Posted 31 Jan 2016 at 01:23

Sometimes as cancer cells die with the radiation they can give out a surge of PSA, which could be described as a flare. Let's hope it is this and that the next PSA test will result in a significant fall.

Barry
 
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