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User
Posted 08 Jul 2023 at 19:25

Hi All, I had prostatectomy 23/7/2015, salvage radiotherapy March/April 2017, hormone therapy December 2016 to April 2019.

My PSA has been <0.1 since including my latest test in early June.

I have been experiencing leg pain and decreased sensation in areas for a while with an MRI showing no trapped nerves or spinal cord issues. Some spinal stenosis in lower lumbar area. Because of the pain I had a bone scan Thursday 6/7/2023. I was hoping all was well but after a long time lying after the scan the radiologist asked me if my lower right leg was giving me issues as there were a number of hot spots showing up on the scan there. I was sent for 4 x-rays of the lower right leg to look further. A trainee was taking the x-rays with an experienced radiographer checking the images. It really unsettled me when they winced at the last image. 
I don’t want to get ahead of myself. My wife wants me to phone the CNS on Monday but I’m not sure whether I should just wait on the full reports?

The thought of having more treatment is difficult to say the least.

Thoughts?

Ido4

User
Posted 09 Jul 2023 at 12:58

Sorry to hear this.  Hope you get answers soon.

User
Posted 09 Jul 2023 at 20:57
Fingers crossed it's nothing. No need to be passive though, ask them there and then and tell them why you were concerned. If nothing else they will learn there is an actual patient in the room too!
User
Posted 09 Jul 2023 at 21:16

Thinking about you, hope it’s a positive outcome. 
Leila 

User
Posted 10 Jul 2023 at 01:32

Really hope all turns out well for you. 

It’s so easy to imagine the worst, one thing I’m pretty great at…it often isn’t as bad as my thoughts, and I hope the same for you too.

User
Posted 10 Jul 2023 at 21:43

Ido4,

So sorry to hear that you've got a new worry.  I can't offer any practical advice or similar experience to share, but hoping all works out  OK.

Take good care of yourself

JedSee.

User
Posted 11 Jul 2023 at 12:08
lets hope Lyn has got it right, take care

DaveH

User
Posted 12 Jul 2023 at 18:13
Beers ahoy ship-mate. Why not ! Best wishes
User
Posted 12 Jul 2023 at 21:40

Great news Ido a pint is in order πŸ‘

User
Posted 13 Jul 2023 at 19:08

Arthritis lights up on bone scans. However, this will be on joint surfaces which is not normally where bone mets are, which tend to start in areas where there's bone marrow, so a trainee might have looked alarmed at a scan which a more experienced radiographer would know is not a typical layout of bone mets.

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User
Posted 09 Jul 2023 at 00:52
I don't think there is any harm in phoning the CNS but I suspect you will have to wait for the reports and possibly a referral to oncology for more scans. If there are mets, they may not be from the prostate cancer.

I hope you have more information soon.

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

User
Posted 09 Jul 2023 at 10:11

Thanks Lyn, I appreciate your thoughts on this. I’ve also wondered about a second cancer being the cause.

Ido4

User
Posted 09 Jul 2023 at 12:58

Sorry to hear this.  Hope you get answers soon.

User
Posted 09 Jul 2023 at 13:40

Originally Posted by: Online Community Member
A trainee was taking the x-rays with an experienced radiographer checking the images. It really unsettled me when they winced at the last image.

Of course, it could just have been that the trainee wasn't getting clear images and the experienced member of staff thinking "how the hell did you get this far in your training?" 

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

User
Posted 09 Jul 2023 at 15:51

Could be the case Lyn. It looked more like they were thinking omg.

Ido4

User
Posted 09 Jul 2023 at 15:52

Thanks Ulsterman, I hope so too. 

Ido4

User
Posted 09 Jul 2023 at 17:47

Ido4, very easy to read things into people reactions. Hope it turns out to be something simple.

Thanks Chris 

User
Posted 09 Jul 2023 at 18:55
Ido4 all the very best and wishes. Hopefully it will all be ok. Thinking of you. We all know it’s tough each test or scan. Keep strong πŸ’ͺ
User
Posted 09 Jul 2023 at 19:11

Thanks Chris, I know when you’re super sensitive to body language it may be nothing. 

Ido4

User
Posted 09 Jul 2023 at 19:12

Thanks ChrisJ, that means a lot. 

Ido4

User
Posted 09 Jul 2023 at 20:57
Fingers crossed it's nothing. No need to be passive though, ask them there and then and tell them why you were concerned. If nothing else they will learn there is an actual patient in the room too!
User
Posted 09 Jul 2023 at 21:16

Thinking about you, hope it’s a positive outcome. 
Leila 

User
Posted 10 Jul 2023 at 01:32

Really hope all turns out well for you. 

It’s so easy to imagine the worst, one thing I’m pretty great at…it often isn’t as bad as my thoughts, and I hope the same for you too.

User
Posted 10 Jul 2023 at 21:43

Ido4,

So sorry to hear that you've got a new worry.  I can't offer any practical advice or similar experience to share, but hoping all works out  OK.

Take good care of yourself

JedSee.

User
Posted 11 Jul 2023 at 12:08
lets hope Lyn has got it right, take care

DaveH

User
Posted 12 Jul 2023 at 16:11

Thank you to all replying with good wishes and sensible advice. I cannot tell you how much it helps.

The good news is despite my bone scan showing uptake on my right shin and left hip there is nothing to worry about!

Degenerative changes are the most likely cause.

Im now feeling foolish for worrying but that’s the nature of this damned disease.

Celebration time!

 

 

Ido4

User
Posted 12 Jul 2023 at 18:13
Beers ahoy ship-mate. Why not ! Best wishes
User
Posted 12 Jul 2023 at 18:47

Cheers Chris.

Ido4

User
Posted 12 Jul 2023 at 21:40

Great news Ido a pint is in order πŸ‘

 
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