In limbo

FormerMember over 1 year ago

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At the end of May it was confirmed by the Urology professor that I have a 43mm RCC on my only kidney and he ordered a PET scan to check my lymph nodes as there was some inflammation in some of the surrounding ones showing on the CT scan.

I am still waiting for the results for that, but had the CNS phone and tell me that I'm being referred to lower GI for a sigmoidoscopy as a polyp needs to be checked and also being referred for a biopsy of my kidney.

I see so many people starting treatment or having surgery within a couple of months of diagnosis and I'm nearly 3 months in with no idea of what's going on :-(

I can't seem to get any answers and have no upcoming appointments, only a courtesy call to come in October

Any advice or reassurance that this is all pretty normal

Thank you x

Mmum over 1 year ago

I'd chase and ask for a F2F for Q&A. It's not the nurses job to inform you of scan outcome but the consultant's remit. Also doing so, builds trust between the medical profession and the patient. You don't say when your scan was so I'm guessing June, which would mean results beginning July perhaps and it's the end of July now. Waiting until October is unreasonable - a joke in fact. Plus you don't want a "courtesy call" you need results from the scan and what your options are. You need to be consulted on the way forwards - it's not their job to decide without discussion. I think you need to make a nuisance of yourself and demand to be respected.

It's not how my oncologists treat me. But unfortunately we do hear of some sub par dr/patient engagements.

You could say how anxious it's making you, or you could go to your GP and get them to chase Urology for an update and GP is concerned the stress the situation is causing you blah de blah. Plus, urology may have sent an update to the GP as standard protocol.

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In limbo