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User
Posted 08 Jul 2023 at 18:25

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 11:58

Sorry to hear this.  Hope you get answers soon.

User
Posted 09 Jul 2023 at 19:57
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 20:16

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

User
Posted 10 Jul 2023 at 00:32

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 20:43

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 11:08
lets hope Lyn has got it right, take care
DaveH
User
Posted 12 Jul 2023 at 17:13
Beers ahoy ship-mate. Why not ! Best wishes
User
Posted 12 Jul 2023 at 20:40

Great news Ido a pint is in order πŸ‘

User
Posted 13 Jul 2023 at 18:08

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 08 Jul 2023 at 23:52
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 09:11

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 11:58

Sorry to hear this.  Hope you get answers soon.

User
Posted 09 Jul 2023 at 12:40

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 14:51

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

Ido4

User
Posted 09 Jul 2023 at 14:52

Thanks Ulsterman, I hope so too. 

Ido4

User
Posted 09 Jul 2023 at 16:47

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 17:55
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 18:11

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

Ido4

User
Posted 09 Jul 2023 at 18:12

Thanks ChrisJ, that means a lot. 

Ido4

User
Posted 09 Jul 2023 at 19:57
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 20:16

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

User
Posted 10 Jul 2023 at 00:32

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 20:43

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 11:08
lets hope Lyn has got it right, take care
DaveH
User
Posted 12 Jul 2023 at 15:11

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 17:13
Beers ahoy ship-mate. Why not ! Best wishes
User
Posted 12 Jul 2023 at 17:47

Cheers Chris.

Ido4

User
Posted 12 Jul 2023 at 20:40

Great news Ido a pint is in order πŸ‘

User
Posted 12 Jul 2023 at 23:19

Fantastic news Ido4, such a relief for you and your family.


Very best wishes


Angex

User
Posted 13 Jul 2023 at 00:28
πŸŽ‰πŸ»
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 13 Jul 2023 at 05:44
So the sly look from the radiologist was because he knew you were a "degenerate"!
User
Posted 13 Jul 2023 at 06:35

Great news, definitely worth celebrating! Really happy for you x

User
Posted 13 Jul 2023 at 13:56

Originally Posted by: Online Community Member
So the sly look from the radiologist was because he knew you were a "degenerate"!


Love it. Absolutely franci! Made me laugh. 

Ido4

User
Posted 13 Jul 2023 at 13:57

Thanks Elaine.

Ido4

User
Posted 13 Jul 2023 at 16:46

II am 7 years post removal and now my PSA is rising.


I had a Cat scan and bone scan. Both showed areas which could be of concern but the oncologist said they were inconclusive. She sent me for s PET scan which now has come back as clear and recommended a PET-CT scan with 68Ga- Psma. So. Now waiting for next chapter. 


Just shows nothing is 100%.

Edited by member 13 Jul 2023 at 17:01  | Reason: Spell

User
Posted 13 Jul 2023 at 16:57

Originally Posted by: Online Community Member


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





Not foolish at all! I have six monthly PSA tests after my prostate cancer treatment and a yearly CT scan after kidney cancer, and although I can put cancer out of my mind in between tests, I go through mental anguish waiting for the test result every single time, and well over four years after treatment it never gets easier, so I totally know where you're coming from on this. 


Delighted that you've had good news on this. 


All the best,


Chris


 

User
Posted 13 Jul 2023 at 18:08

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.

User
Posted 13 Jul 2023 at 20:16

Hi SiamPark,


Sorry to hear your PSA is rising. What is it at now?


I agree that no scan is 100%. Wishing you all the best.

Ido4

User
Posted 13 Jul 2023 at 20:16

Thanks CC. 

Ido4

User
Posted 13 Jul 2023 at 20:19

Thanks Andy, I still don’t quite understand what has shown up on my shin but the hip joint I do understand. Any suggestions? Best wishes,

Ido4

User
Posted 13 Jul 2023 at 20:50

.41 last test but with scans not showing anything not sure of next step.  Seeing specialist in 10 days so should have more idea. Live is a waiting game these days 

User
Posted 13 Jul 2023 at 21:29

Originally Posted by: Online Community Member


Thanks Andy, I still don’t quite understand what has shown up on my shin but the hip joint I do understand. Any suggestions? Best wishes,



Nuclear bone scans are extremely poor resolution. If there are one or two clinically significant suspect areas, they would usually X-ray them, or do a CT or MRI scan, or possibly even a PET scan, to get a better idea what's going on there. "Clinically significant" means if understanding what's happening there might change your treatment.

Edited by member 13 Jul 2023 at 21:36  | Reason: Not specified

User
Posted 14 Jul 2023 at 22:17

Thanks Andy.

Ido4

User
Posted 02 Feb 2024 at 10:06

after many scans and tests I have finaly been sent for radiotherpy for 5 weeks (25 sessions).


Before treatment starts I am having a hormone injection and a scan next week to prepare the area.


As there was so much information to take in at the appointment I need advice about diet before scan as I was told to limit some food and drink for 5 days but a lot got lost in translation and having so much to take in. Any ideas?


As I live in Spain a little will differ from UK but most would be the same.


 


Thanks in advance


 


 

Edited by member 02 Feb 2024 at 10:27  | Reason: Not specified

User
Posted 02 Feb 2024 at 12:34
You might want to start your own thread on this Siampark - you will probably get better responses with a title more suited to your question.
 
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