Devastating News

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

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

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

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.

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.

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

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.

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

We already know that the original back pain was due to severe disc damage - a number of different scans and MRIs confirmed this at the time. What we don't know is if the pain from that masked cancer pain too.

Sorry but I don't know a specific answer but if the first zoladex jab was last Friday and you have a new PSA test a few days ago the zoladex has not had a chance to get going. The zoladex is more powerful than the biclutamide in getting PSA down normally.
As for the rise itself, it looks bad because the numbers are so high to start with however what it does indicate is that the PSA increased by 11% in a week. Whilst that is not great it would indicate that the doubling time of the cells is 9 weeks, some peoples double every week ( mine did briefly before the drugs started to work although my score was much lower in the first place).
Remember your dads situation has not been spotted until it has had a chance to get to 6,000, to put it in perspective, if it had been 12 last week it would now be 13.
Everyone is different and I totally understand why everyone is concerned, maybe the zoladex won't work or maybe it will work spectacularly ( mine went from 342 to 8 in 3 months) , at this stage you sadly need to wait and see.
The docs may have other ideas as to other intervention now but they may also want to wait.
The results from the scans will help understand, the biopsy is likely to confirm there is a lot if quite fast growing cancer but you kind of know that already, it's the MRI that will show you the spread and then they can plan how to target it.
Right now ( and this is easy to say) just try to be together as a family as much as you can and enjoy each day you can, let ignorance be bliss rather than sad.
My thoughts are with you and your family
Kev

Hi Sallyyy - just picked up on your messages - my o/h diagnosed Xmas Eve and had his first injection then - he was referred to Oncology and put on STAMPEDE Trial.  His PSA over 4,000 and Gleason 4 - he has done really well and Oncologist and support staff marvellous particularly the Sisters' at The Hospital.  The cancer kept itself so well hidden and I felt and still do quite angry with it - stupid really but I have to be honest.  However, people are so supportive on this web site and it has given me courage and comfort in the fight - the o/h won't discuss this much!!  So, when people say there is hope, there really is - so you take care and take courage.  I dip in and out of this site am a bit of a nerd with this technology, and hope that's made you smile a bit !  Take care

Thank you for adding your story Jackie. I'm glad your husband is doing ok on his treatment

x

Edited by member 20 Oct 2016 at 22:41  | Reason: Not specified