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Unable to have an mri scan

User
Posted 01 October 2016 19:37:39(UTC)
Was diagnosed with pc after a psa test at doctors came back with a score of 11.4. A trus biopsy had one sample with a Gleason score of 3+3 in one sample. Consultant wanted me to have an mri but I cannot due to metalwork in my head after s craniotomy 5 years ago for a brain avm. Am having a ct scan of pelvis and abdomen soon but was told that it will prob not help much compared to an mri. Have been put on active surveillance. My question is, been only 54, am I doing the right thing in choosing active surveillance and should I be altering my decision if psa goes up slowly? Also due to my age, does that mean the chances are I will need surgery eventually.
User
Posted 01 October 2016 21:53:44(UTC)

Hello Maverick and welcome

You are currently in the "lucky" camp with a low Gleason score.

If you can live with Active surveillance and cope with the knowledge of cancer inside you then it's a bonus as it is giving you breathing space to make a studied and informed decision regarding further treatment.

You will be closely monitored with AS so will be advised when it's best to act if the PSA rises so PC is not going to catch you out overnight.

I am sure that others will be along to advise you regarding your other questions. In the meantime you could go to Publication on this site and download The Toolkit which are a set of handy leaflets on aspects of PC and its treatments.

Best Wishes

Sandra
************

We can't control the winds - but we can adjust our sails
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User
Posted 02 October 2016 00:10:25(UTC)

Hi Maverick,

Has it been established that the plate in your head has ferromagnetic properties? If this is just an unknown, there is a test to determine this as if not you might be able to have an MRI scan Maybe worth looking into. http://mrimetaldetector....g/2009/03/mri-and-metal/

Barry
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User
Posted 02 October 2016 07:31:19(UTC)
Consultant who did the op said that an mri could dislodge the clips on blood vessels and not worth the risk. Is worth having a ct scan if it will not be clear from the result.
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User
Posted 01 October 2016 21:53:44(UTC)

Hello Maverick and welcome

You are currently in the "lucky" camp with a low Gleason score.

If you can live with Active surveillance and cope with the knowledge of cancer inside you then it's a bonus as it is giving you breathing space to make a studied and informed decision regarding further treatment.

You will be closely monitored with AS so will be advised when it's best to act if the PSA rises so PC is not going to catch you out overnight.

I am sure that others will be along to advise you regarding your other questions. In the meantime you could go to Publication on this site and download The Toolkit which are a set of handy leaflets on aspects of PC and its treatments.

Best Wishes

Sandra
************

We can't control the winds - but we can adjust our sails
Thanked 1 time
User
Posted 01 October 2016 22:58:18(UTC)

Have a quick look at my profile, similar age and stats to my OH

User
Posted 02 October 2016 00:10:25(UTC)

Hi Maverick,

Has it been established that the plate in your head has ferromagnetic properties? If this is just an unknown, there is a test to determine this as if not you might be able to have an MRI scan Maybe worth looking into. http://mrimetaldetector....g/2009/03/mri-and-metal/

Barry
Thanked 1 time
User
Posted 02 October 2016 07:27:56(UTC)
Hi lyn. See what you mean about similar results. Just wish I could have an mri to get accurate diagnosis. Will see what my next psa test and ct scan shows, then might get in touch with nurse to have a rethink.
User
Posted 02 October 2016 07:31:19(UTC)
Consultant who did the op said that an mri could dislodge the clips on blood vessels and not worth the risk. Is worth having a ct scan if it will not be clear from the result.
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User
Posted 02 October 2016 07:57:46(UTC)

Personally I would ask if you could be considered for a Choline PET scan with your PSA results. It would be accurate I think , and well justifiable given your inability to have an MRI. Good luck




If life gives you lemons , then make lemonade
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User
Posted 02 October 2016 20:48:22(UTC)
Did you have symptoms and ask for PSA test. Ie is there just the 1 test value. Have you choosen AS or been advised.
See my profile. To answer your last question. More than likely some intervention is going to be needed sometime. You have early diagnosis.
Again not necessarily surgery, others options obviously possible. My single MRI scan didn't show my Gleason 7 was near the capsule edge. Or at least I wasn't told that. Mine was a far easier decision than yours. Ie I had in many ways under gone active surveillance in very broad terms myself my simply requesting PSA tests. Did I leave it too long .. who knows. I had no symptoms and in very good health. Surgeon recommended zero nerve sparing, again maybe action earlier then nerves could have been spared. Hope this helps. My brother who is 8 yrs older than me has paid for MRI imaging.. He lives in Australia. Has BPH. However has recently been recommended to have his first biopsy. .The point being as far as I understand only a biopsy can show the grade of cell differentiation or lack of.. In your case I'm making an assumption that MRI would show localised or not and locations of suspicious lesions. Are you comfortable having repeat biopsies ? Ie PSA level is as I assume you know a poor indicator of what is now going on...
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User
Posted 02 October 2016 21:18:32(UTC)

I don't quite agree with that last comment robgsr - PSA is likely to be a good indicator of what is going on in this case - if the PSA remains stable, AS can continue, if PSA rises slowly a rethink about scans would be advisable, if PSA rises swiftly then treatment sooner rather than later. As you can't have MRI it will be particularly important to have proper AS with annual biopsy, annual DRE and maybe a choline PET when appropriate.

Maverick, at 54 you will presumably be hoping to live to your 80s at least. A PSA of 11.4 with G3+3 suggests that you will probably need radical treatment at some point in the next 30 years - whether that is RT, brachy or surgery remains to be seen and is a decision that can be made when you get to that point, as treatments are evolving & improving all the time.

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


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User
Posted 05 October 2016 10:02:05(UTC)
Hi Lyn
Yes agree with all your comments. I think my use of 'poor' has incorrectly given the wrong impression. I think the point I was trying to express was maverick only appears to have 1 PSA value which could be high for numerous reasons.


Thanks
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User
Posted 29 January 2017 20:30:45(UTC)

Been on AS for 6 months now. Have heard nothing from hospital and after 4 months I went to my doctors to arrange a psa test for myself. Result was down slightly 8.1 still not heard anything from hospital 2 months later. Is this normal go be put on AS and then sort things out yourself. Feel like I have been forgotten about.

User
Posted 29 January 2017 22:57:04(UTC)

Sad to say but you could have been "forgotten", paperwork misfiled, etc. My mother, who has cancer and is just about to start another course of treatment, has had a range of communication issues with her previous diagnosis and now with the latest round of tests - letters not being sent or received, doctor's letter not being following up on, etc. That is with Barts in London.

I would contact your consultant's PA, or whomever was assigned to you when they put you on AS. Blood tests at the GP would not necessarily trigger anything back at the hospital - from my experience. Hopefully you will get another PSA showing further decrease.

Chris

User
Posted 29 January 2017 23:52:13(UTC)

Hi Maverick

?  Surely in first year you should have had 3 or 4 ?

https://www.nice.org.uk/news/article/new-protocol-for-active-surveillance-of-men-with-early-prostate-cancer

I took control, however my situation was not like yourself, as not on 'AS' by GP (info in profile)

My decision was easy as my first and only biopsy showed Gleason 7 (4 + 3)

 

My brother just dx with PSA 3.57 (he had been as high as 18). Gleason 7

He however lives in Australia and had mpMRI 2015 and only decided on his first and only biospy late 2016 (  he is having RT this spring) 

His lesion was identified as 1.1 cm and unifocal, whereas mine were multifocal, he was given his full printout and can access his scan online if required.   Until I see my consultant next month (2 yr check) I have no idea if my MRI was compared/matched to the post op biospy full results.  

I have been extremely pleased in the way the Hospital  has dealt with me.  I just find chatting to my brother, he gets given loads of detailed information and more if required, whereas we have had to ask.   I've just got the basic letter(s) re. grading , stage etc.         

Post RALRP I have organised my own PSA 3 monthly with local GP.  Not a problem, as I just put it in google calendar and/or diary.  The nurse takes blood and sends it off. I just phone up, never see a GP .  I can probably carry on with 3 monthly tests, rather than 6 mthy or yearly post 2 yrs, however won't' want to waste resources.   

PSA Anxiety can kick in, that's another story. !

Hope you are soon sorted.       

Regards.

Gordon

 

   

 
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