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Dad diagnosed - looking for some guidance

User
Posted 01 Apr 2022 at 12:00

Glad your dad's treatment is on its way feel sorry for your mum what a way to treat someone after 21years service 😬 hopefully she fares better than me after weeks of form filling told I was entitled to nothing it's about right probably should have joined the great settee brigade but nothing to thank any one for 👍 good luck to them both in the coming months with their treatment 

User
Posted 01 Sep 2022 at 09:50

Hi all,

Realise it’s some time since I last posted an update so wanted to check in with all on progress.

Dad had his surgery in May and it went well, he recovered quickly from it (albeit struggled with the catheter!) and has been doing well since. He had his first PSA test in July and it came back undetectable. Still trying to get our heads round this given 6 months ago he was diagnosed as stage 4, and was told by the oncologist he had 5 or so ‘good’ years. I appreciate my dad’s case is quite unusual, but it goes to show (as I know others on this forum have), that getting a second opinion can really make all the difference. We never approached it expecting a change of outcome but more just to validate what the first oncologist had said

The Marsden said that they had seen about 5 cases like my dads before (a false positive on PET CT as a result of benign hemangioma), but expects as these scans become more common that rates of false positives will be more prevalent.

By no means feel like we are out of the woods yet but things are certainly looking more positive than where they were 6 months ago (for both mum and dad!)

thanks again for all your support, and if anyone wants more info on my dad’s case and who we saw for second opinions etc, then always happy to have a chat.

as an aside, I’ve felt a bit powerless over the last 6 months so signed up to the London Marathon in October… I couldn’t do it for PC UK as they had no spots left so running for Macmillan instead… wish me luck!!!!

User
Posted 01 Sep 2022 at 15:19

Hi Sam,

Amazing update. So pleased to hear that all is going so well. 
I feel the same that it’s hard to believe how things felt 12 months ago compared to now after the second opinion. I too am reluctant to get too carried away as I know things could change at any point but enjoying life again for as long as possible. 
Wishing continued good health to your dad and of course your mum, glad she is doing well also 👍

User
Posted 01 Sep 2022 at 15:47

Hi,

That's a good outcome, and a possibility to keep in mind.

There is a paper on another similar case: Vertebral Hemangioma Mimicking Bone Metastasis in 68Ga-PSMA Ligand PET/CT

User
Posted 02 Sep 2022 at 10:27

Hi

Great news for your dad ;-). Just to say also that they thought my cancer had spread to the right iliac bone in my hip as something showed up on a PSMA PET scan. However an MRI revealed this was unlikely to be cancer and probably a haemangioma.

Good luck re. the Marathon.

Zum

 

Originally Posted by: Online Community Member

Hi all,

Realise it’s some time since I last posted an update so wanted to check in with all on progress.

Dad had his surgery in May and it went well, he recovered quickly from it (albeit struggled with the catheter!) and has been doing well since. He had his first PSA test in July and it came back undetectable. Still trying to get our heads round this given 6 months ago he was diagnosed as stage 4, and was told by the oncologist he had 5 or so ‘good’ years. I appreciate my dad’s case is quite unusual, but it goes to show (as I know others on this forum have), that getting a second opinion can really make all the difference. We never approached it expecting a change of outcome but more just to validate what the first oncologist had said

The Marsden said that they had seen about 5 cases like my dads before (a false positive on PET CT as a result of benign hemangioma), but expects as these scans become more common that rates of false positives will be more prevalent.

By no means feel like we are out of the woods yet but things are certainly looking more positive than where they were 6 months ago (for both mum and dad!)

thanks again for all your support, and if anyone wants more info on my dad’s case and who we saw for second opinions etc, then always happy to have a chat.

as an aside, I’ve felt a bit powerless over the last 6 months so signed up to the London Marathon in October… I couldn’t do it for PC UK as they had no spots left so running for Macmillan instead… wish me luck!!!!

 
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