Devastating News

User

Posted 11 Oct 2016 at 13:11

Hii I wrote at the end of last week to say that my husband had a rectal exam for piles but it had showed suspect hard area. He was sent for immediate PSA test and we were called for urgent consultant appointment today.
Unfortunately the PSA reading was 6006 and the Dr said it is too late to do any surgery.
They are going to start hormone surgery immediately and do bone scans, biopsy and Mri.
The Dr was very matter of fact. Nurse much nicer.
I am heart broken.
Can anyone offer any hope x

User

Posted 11 Oct 2016 at 13:24

Oh Sally, you are at the worst point at the moment.

Your OH will have to have a lot more tests to determine exactly what is happening and what the treatment plan will be.

It is good news that they have started him on the HT already whilst they investigate further. This will start to put the cancer to sleep immediately.

Download the Toolkit off this site and other members will be along shortly to reassure you.

Alison x

User

Posted 11 Oct 2016 at 13:37

Hi Sally, there will be lots of questions you want answered and at the moment you are in shock, call one of the nurse's on the website this afternoon and they will help you get things a little straighter also once a treatment plan is started it feels like something is being done. Take care Jayne x

User

Posted 11 Oct 2016 at 13:50

Yes he will be dealt with by oncology now rather than urology.

User

Posted 11 Oct 2016 at 16:32

Hi Sally,
Firstly I want to say how sorry I am that you find yourself here with the news that you have just had.
Is there any Hope ? Of course there is.
Trevor was diagnosed in May 2013 with a stating PSA of 13000 , he has multiple bone mets as well and like you we were devastated thinking at the time that he probably only had weeks at the most.
So fast forward 3 years and here we still are , ok the road has been Rocky in places and it hasn't all been plain sailing but Trevor is still able to do most things .
Keep your chin up , I remember vividly those early days and weeks once you get scans , tests and results out of the way you will feel better and more able to cope. I promise.
BFN
Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 11 Oct 2016 at 16:45

Thank you so much for all the replies. Particularly Julie. I am really sorry that your husband has been going through this too but I hadn't seen anyone else with such a high PSA so I am really grateful that you took the time to send a message.
I rang the prostate UK number earlier and got through to one of the nurses who was very useful so thank you to the person who suggested that x

User

Posted 11 Oct 2016 at 17:10

Sally I am so sorry .I too was told had an enlarged prostate ,have a turp consultant said that would cure it. Four weeks later sitting in his office saying the words prostate cancer my wife nearly fell on floor we were silent on the way home because we couldn't think straight thank god for this site. Lovely people going through it too Jonny

User

Posted 11 Oct 2016 at 17:14

Thank you Thistle for your hopeful message. I'm really glad you have have good time with your husband since his diagnosis.

We are at a hospital that is directly linked to the Marsden (same consultants) so I am assuming that is a good thing in terms of standard of care (?)

One question I forgot to ask today. They are doing a CT scan rather than an MRI - does anyone know the difference or reason?

User

Posted 11 Oct 2016 at 18:32

MRI are better at close-up detail of a specific organ or a certain area of the body. Full body scans can be done this way but take a long time both to do and then assess afterwards. A full body CT takes minutes and a special dye is injected which readily shows up issues. An MRI would then be done as a follow up to give detail. Hope this helps

User

Posted 11 Oct 2016 at 18:46

Thank you Chris

User

Posted 11 Oct 2016 at 20:20

Ct scan would be looking for spread in the soft tisssues and a bone scan looks for spread in the bone. Outcome of both determines the extent of spread and helps in treatment plans. Always difficult waiting for tests but hold on as it becomes clearer once they have been done. It may not seem like it but there are many on here who continue to fight on. I have bone mets but nearing five years now.

User

Posted 11 Oct 2016 at 20:30

Thank you for that extra info.

I am struggling with the fact that it is so hard to find details of men who had such high PSA levels, I know I need to try and stay positive but that is making it even more difficult.

User

Posted 11 Oct 2016 at 21:19

You won't find many examples on here - yours is probably the 2nd highest we have ever had on this forum after Trevor. On the up side, my husband's urologist once had a man diagnosed with a PSA of 160,000 and in Ireland there was a man with a score of 120,000. You could look at YANAnow website (you are not alone now) where you can search members by their details - that might pull up some other cases.

Staying positive is important but it can cause more distress if you put all your efforts into convincing yourself that it will come back as early stage and easy to sort out, only to be devastated when the rest of the results come through. Knowing how much spread there is, and where, will make a massive difference to you both - as already said above, some men are diagnosed with bone spread but are still around - living with it - 10 or more years later. Others can be diagnosed with a very low PSA and a few soft tissue mets but sadly only live a few months. There is no way really to predict which is which.

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

User

Posted 11 Oct 2016 at 21:33

Thanks Lyn
After the initial shock this morning I think it is slowly starting to dig in just how serious it is. I keep looking at our teenage children who adore their dad.

User

Posted 12 Oct 2016 at 14:36

Does anyone know anything about them doing a 6 point biopsy instead of a 12 point?
We are assuming it is because they already know that the cancer will be all over the prostate so they dont need as many points. Does anyone know? Thank you

User

Posted 12 Oct 2016 at 22:12

Hi, I also had a 6 point biopsy. I asked the doctor why he stopped at 6 (I was quite pleased as it's somewhat painful) , he said that they usually do 12 to make sure they get a fair picture of the spread and growth speed but in my case it was obvious that my prostate was riddled with it so he didn't see the point to do any more ( not so pleased).
I guess that as my seminal vessels had already packed up that indicated that my prostate was pretty well saturated with cancer as all 6 were positive.
Not the best news but as I said on your other thread yesterday, I have had 2 good years since and live for every day now with hopefully a load more good days to follow.
If you feel ok physically today then today is a good day, I find the mental battle is one I have to win every morning when I wake and once I have done that then it's a good day.

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User

Posted 13 Oct 2016 at 01:05

sometimes, the most important thing about the biopsy is to check what type it is rather than how much there is. There are at least 27 types of PCa and some of them (the rarer ones) need a different kind of treatment to the rest. 6 points will be enough to test for type.

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

User

Posted 13 Oct 2016 at 08:00

When my husband had the biopsy, the nurse told him that she was positive that cancer wa present. That was ten years ago and he's still going strong so chin up the HT Is keeping it at bay.

User

Posted 17 Oct 2016 at 20:03

Hello everyone
We are still really struggling to come to terms with everything but things have moved forward a little.
Completed : CT scan, bone scan.
MRI and 6 point biopsy due to happen on Wednesday.

28 days worth of Bicalutamide started last Friday (1 a day)

1st injection due to happen this Friday. (Think it might be Zoladex but will double check that on Friday.)

We now think that a long standing back injury has masked the bone cancer (that we have been told to expect) :-(
The back pain also seeks to have worsened over the last couple of days. Not sure is this is hormone tablet side effects or the psychological impact of it being 'cancer' pain if that makes sense. Also very very tired.

I have been looking at info re
abiraterone (zytiga) - does anyone know if it is only available via the stampede trial (which is now full for that option)?

Sally x

Edited by member 17 Oct 2016 at 20:44 | Reason: Not specified

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