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Very worried about referral for high PSA

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User
Posted 16 Jun 2018 at 12:48
Oh flip.

That was a very, very different consultation from anything I've had before.

Every other consultant I've seen it's been a rather breezy "I'm confident that everything you've got can be completely cured".

With this chap it was "I want you to have a skeletal scan MRI and if it comes back positive you've probably got five years to live".

So now I've got this MRI arranged for Wednesday and I know that if it comes back positive it's basically a death sentence. How the heck does anyone cope with that? He's going to give me the results over the phone a few days after the scan.

Scared absolutely shitless, to be perfectly honest.

Chris

User
Posted 16 Jun 2018 at 12:51

 That is totally unprofessional Chris what he should’ve said is “let’s get you in for skeletal MRI and then come back to see me when we have the results“


 With some of the comments and articles I have read on here I am beginning to believe just how lucky I am at the hospital I am registered with 

Edited by member 16 Jun 2018 at 12:51  | Reason: Not specified

User
Posted 16 Jun 2018 at 13:04
I thought I was just going to see him to arrange a template biopsy, Alan. He is going to arrange that, but he also came out with this bombshell that a PSA of 30+ means that the cancer may be metastatic and that if it is he would anticipate around a five year life expectancy. Nobody's every suggested to me before that there's any possibility of metastatic cancer. I'm completely shell-shocked, to be honest with you.

Chris
User
Posted 16 Jun 2018 at 13:19
He sounds delightful; I am so sorry that you didn't have someone with a more positive manner. Fingers crossed he is just being cautious.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 16 Jun 2018 at 13:30
Feeling like ending it all right now, Lyn, to be honest. Don't know how I'm going to be able to cope with the stress of this. Massive panic attack.
User
Posted 16 Jun 2018 at 14:35
The day of my Template Biopsy with a psa of 43 , my Uro said it could possibly be prostatitis or a very aggressive cancer. The 2 TRUS and MRI and bone scans showed nothing prior. But here I am 3 years post surgery living a normal life at 51 with no treatment. Psa was massive post op and they suspected Mets so I refused RT on a QOL basis and recovery. My Onco gave me a probable six years when I was 50. He knows I don’t want treatment until I’m desperate. I want life not cancer and am fighting it my own way. Just try try try to stay calm till you get results. My earliest posts were like yours. I didn’t want surgery at all and just wanted to die. In hindsight that may have been the right thing given my prognosis now. BUT I’ve had lots of love and bonding and holidays and in some ways have enjoyed life and marriage and love more since the cancer. Good luck honestly

If life gives you lemons , then make lemonade
User
Posted 16 Jun 2018 at 16:15
s***, I just can't handle this. Never felt so desperate in my life. Why the hell does this guy tell me this when everyone else has been relatively optimistic? Floods of tears. Panic. Utter despair. How to get through the night? Booze and Valium? Sorry.
User
Posted 16 Jun 2018 at 16:41
Yikes Chris I didn’t mean to upset you. Really sorry. You simply don’t know anything yet and the worry and waIting is always the hardest part. It could honestly all be fine. You can do booze, or you can do Diazepam, but please don’t do both together. I tried that — very messy
Stay strong

If life gives you lemons , then make lemonade
User
Posted 16 Jun 2018 at 16:50
Good advice from CJ - this could just be an onco with a tihs bedside manner and large ego.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 16 Jun 2018 at 16:51
Chris, by "this guy" I meant my consultant, not you. You said nothing to upset me.

My oncologist (who referred me to this consultant) has a clinic on a Monday. I'm going to phone his secretary at 8am on Monday morning and try to get in to see him to explain what's happened and ask his advice. He seemed like a really nice guy when I last saw him.

Chris
User
Posted 16 Jun 2018 at 16:51
Not sure whether the PCUK nurses work at weekends but a call to them or Samaritans may be a better option than the ones you are currently considering
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 16 Jun 2018 at 17:26

Chris, There is always a chance of metastasis, but look at my example, PSA of 38, Gleason 4:5  and no mets. So please try to stay calm my friend it’s rubbish to tell you what this man said. The template biopsies will accurately tell you your Gleason score and that will be matched up with your scans. I have 60% left and 20% right , with one core being 100% cancer but no mets. Template biopsies are to see how much cancer you have in the prostate, not predict mets. Don’t beat yourself up till all your results are in and cross referenced by an oncologist 

Edited by member 16 Jun 2018 at 17:35  | Reason: Not specified

User
Posted 16 Jun 2018 at 20:00
This may sound like a strange thing to say, Alan, but I'm really hoping I do have more active cancer in my prostate that the TRUS missed, because if I don't, microscopic bone mets are by far the most likely cause for my high PSA, and that means "terminal".

Trying not to panic and tell myself that I need to keep calm and wait for the scan results and the template biopsy, but it's difficult, particularly considering the fact that the template results may be six weeks away.
User
Posted 16 Jun 2018 at 20:17

Chris, look at my timeline, template biopsy 1st March results 14th March I think it was.  If most hospitals proceed like mine in the Urology department they have an MDT meeting once a week, in my case, every Wednesday morning and in this meeting will be a Urologist, cancer nurses, surgical and other clinical personnel.  I expect some others on here may have a point of view but I cannot see in any circumstance where you would have to wait six weeks for the result.


For you to be told that a PSA of 30 means you have mets and a 5 year life expectancy is just not true


No Oncologist should even talk about life expectancy until all the case data is sssembled and analysed at MDT and it seems clear from the information you have posted they do not yet have all they need to come to an informed proffesional decision

Edited by member 16 Jun 2018 at 20:24  | Reason: Spelling errors

User
Posted 16 Jun 2018 at 20:41
Sorry, Alan, I should have explained. I’m going away on holiday for a fortnight in the first two weeks of July. The consultant can’t do the template next week and, given that he operates on a Thursday, doesn’t want to do it the following week, only 24h before I go away, in case of complications. That means that it won’t happen until the third week in July at the earliest, and then 2 weeks’ wait for the lab results. Hence I won’t learn the results until early August. A long wait.

Chris
User
Posted 16 Jun 2018 at 20:48

This may seem easy to say Chris,  but I had a  similar situation in April they wanted to start me on bicalutamide on the 15th of March and then two weeks later my first Decapeptyl injection.  I haever booked a holiday to go away to Majorca cycling in October last year before I knew about my PCa  and as I had trained for six months for the holiday and paid for flights and accommodation I was worried about the affect the hormone therapy would  have on me cycling.  The input  I got from my oncologist and my cancer nurse was go on your holiday and enjoy yourself,  it’s important to be in the right frame of mind to start your treatment and three weeks is it going to be crucial so I managed to go away have a fantastic holiday and to be honest I hardly thought about my impending treatment and my situation.


 I know your situation is radically different to where I was then and now. I think the point I’m trying to make is take the break Chris, you need it go away and make a dam good attempt at enjoying yourself 


Alan

User
Posted 16 Jun 2018 at 21:01
If the skeletal scan comes back negative, Alan (and I should know the scan results either next Friday or the following Monday) then I’ll certainly go away and enjoy myself and not worry about the template biopsy. If the result is not negative, then I don’t need anyone to tell me that that’s a death sentence. Can I go away on holiday just having learned that? I don’t think I could. I don’t think anyone could.

Praying for a clear scan.

Chris

User
Posted 17 Jun 2018 at 12:35
Chris, you have two threads going. Not helpful. Metastatic PCa is NOT terminal. You are NOT under a death sentence. You PCa is treatable, with a wide, increasingly wider range of treatments available. A positive state of mind will help get you through this. Plan to enjoy your holiday and let nothing get in the way of that!

AC
User
Posted 17 Jun 2018 at 13:43

Can I ask then, please, whether a skeletal MRI is a routine procedure when determining the staging of PCa, or do you think it's being done only because of the seeming discrepancy between my PSA level and what's so far been found? Would there be any reason to do it if metastatic cancer were not considered a likely diagnosis?


Thanks,


Chris


 

Edited by member 17 Jun 2018 at 13:44  | Reason: Not specified

User
Posted 17 Jun 2018 at 14:20

Chris, I have not heard the term skeletal MRI before. My understanding of MRI is it’s for soft tissue imaging. Bone scan is for skeletal? I may be wrong, just trying to help

 
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