Lung lesion. Baffled

Hello ansteynomad 

Thank you for your post - it's an interesting one and not being medically trained it's as much as a mystery to me as it is to you and your DH.

My first thought was - thanks, it's gone, happy days. After that my mind started to wander (it sometimes comes back! ) so what exactly did they see last August? and why has it just gone? why did they do nothing until February?

It may well be best left (let sleeping dogs lie), however me being me would be asking for a copy of the medical records regarding the lesion and asking the questions above.

I hope my ramblings help.

Best wishes - Brian.

They said that if it was a met the ADT would deal with it. Apparently not everything that shows up on a PET PSMA scan is prostate cancer. There was no discussion about what would happen if it was not a met. It was just left on the back burner until the follow up scan.

We get very little information,  appointments last about 10 minutes max and are focused on the all holy PSA.  Questions are not encouraged and are usually deflected. The Specialist Nurse appears to know nothing. Medicine by numbers.

Thanks for the reply ansteynomad, 

That's not the care you need from the NHS - have you considered challenging your team or even changing your hospital - you do have choices under the NHS.

I live in North Manchester and my oncology team are The Christie in Manchester. OK so I have a complicated journey, but my team are more than happy to answer questions, treatment is by mutual agreement and if I need to speak to my team they are there at the end of an e-mail. I consider myself a "lucky boy".

Best wishes - Brian.

Hello Ansteynomad,

Like Millibob (Brian), my initial thoughts would be relief that it had gone, but then my brain would be wanting to know the ins & outs of what it was originally & what had happened.  

To my mind, the more information you have the better it is to understand what is happening.  As you obviously have questions & reservations about what you are being told, maybe it's time to put these in a letter to the consultant & copy in the PALS team at the hospital.  Keep it factual & don't blame anyone but do stress the impact not knowing is having on you both. Maybe giving a timescale of around 2 or 3 weeks for a reply will help them focus on getting back to you sooner rather than later. 

Best Wishes

Brian

Hello ansteynomad,

Personally I'd push hard for a follow up scan in a few months to confirm that the disappearing lung lesion has in fact gone. I think you need to be absolutely sure there really is nothing there now.

All the best,

Derek.

Just an aside, if you want to get information from or about your medical records, you can do so by something called a "subject access request".

You can find out how to do it here - https://ico.org.uk/for-the-public/getting-copies-of-your-information-subject-access-request/

It takes quite a while to come through, probably too long for your current need.

BUT, sometimes when a department understands that one of these is in place, they become aware that you are serious about wanting information.

That alone might be beneficial.