Questions to ask after first diagnosis

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Hi all,

Thanks everyone for making such a safe and supportive space - I've had a quick look around and it seems great. My mother (77) has just been diagnosed with Stage 3 upper tract urothelial carcinoma (UTUC), and we have a meeting with the doctor to ask any questions. To date, all we know is the stage and that it is high grade - she had the kidney and ureter removed about 4 weeks ago, and just had the result. They now want to do a full-body scan in 2 weeks, to inform a treatment plan.

I am just wondering if there are questions that think are good to ask at this stage - I want to make the most of the meeting, but am not completely sure which questions to ask. I thought this would be a good place to seek advice - thanks everyone and I wish you all the best on your individual journeys,

Thank you!

Bungle1 1 day ago

Hi liongirl5c0da8

Sorry about your mum's diagnosis. I had a different cancer so I can't really say what you should ask. If you scroll through the types of cancer and find your mums and post on there you will hopefully get a more useful response than mine. Have put a link below. https://community.macmillan.org.uk/cancer_types/

I would say to get a notebook and write down any questions that come into your head nothing is silly. My first question was am I going to lose my hair which in the grand scheme wasn't really important but it was all I could think about. I think they will discuss anything they class as important and I was given a lot of literature to read. Sending hugs. Xx

liongirl5c0da8 1 day ago in reply to Bungle1

Thanks so much for replying, useful insights and I'll scroll through more as you suggest. Thanks!

latchbrook 1 day ago

Hi liongirl5c0da8 and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I’m Anne, one of the Community Champions here on the Online Community, and although I've had different cancer diagnoses to your mother I know how overwhelming it can all be at the starts.

As Bungle1 has mentioned, the online community is divided into different support groups so I'm going to recommend that you join the kidney cancer and bladder cancer groups as you'll then connect directly with others who have the same type of cancer as your mother.

To join, just click on the links I've created and, once you've joined, you can start a new post in the same way as you did here and join in with existing conversations by clicking on 'reply'.

It would be great if you could put something about your mother's diagnosis and treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.