Experts needed

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Hi all 

I have been copied in to the letter to my doctor.

Diagnosis : new diagnosis of bladder cancer - G3 T1/2 November 2019

Follow up 

MDT

OPD(?)

The CT THORAX has not demonstrated any remarkable findings phew 

I have a WHO performance status of 0(?)

The good thing is I made a good recovery post TURBT.

I know I could look all this up but would be grateful to hear from others who know more than I do.  I don't want to visit Dr Google.  The only thing I think I know is I have Grade 3 cancer.

Love Inanna 

  • Hi

    Can u repost ths in "Ask an expert" please? Our ( mainly) volunteer experts  can then see  it and untangle the terminology for you 

    Please allow 2 working days for them to reply.

    Thanks

    Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
  • Will do Buttercup

    I know that I don't know
  • Hi Inanna. Your diagnosis is looking positive. T1/T2 is the stage which shows how far the tumour has progressed. Yours is bordering on invading the muscle, so has been caught at a good time. G3 is the type and grade of aggressiveness. G3 is the more aggressive type, but don't panic, most are. OPD usually means you have been referred to an out patient department, so you should get an appointment there for follow ups. Not come across WHO. The CT scan indicates nothing outside the bladder identified. If bc does spread, then the lungs are a favourite place which is why the chest CT. The MDT (multi disciplinary team) will discuss your case and come up with a treatment plan. Treatment options vary, but once you get a definite plan, you then have something positive to focus on. Best wishes.

    Best wishes to All,   rily.

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  • Rily

    Thank you so much for this, here is a big virtual hug for you.

    One more thing, could the tumour invade the muscle while I am awaiting treatment.  I know it sounds a silly question but you know what the imagination can do

    Love Inanna

    I know that I don't know
  • Hi Inanna. Although these things are classed as aggressive, growth is relatively slow, especially in early stages as yours. Unlikely to progress noticeably in weeks. Best wishes

    Best wishes to All,   rily.

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  • Rily

    Thank you, thank you, thank you

    Love Inanna

    I know that I don't know
  • Thanks rily

    Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
  • Hi Inanna. My earlier posts were a bit brief as I was out and about using my phone. Now back on a real keyboard. We tend to find that once the initial TURBT is out of the way, things tend to go at a slower pace as regard appointments etc. Frustrating, but we get used to it. You are right to keep away from Google as there is a lot of out of date and misleading information out there. If you want to know the ins and outs of bladder cancer and treatments, then ActionBladderCancerUK is a reliable and informative site. Best wishes. 

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    Best wishes to All,   rily.

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  • Rily

    Thank you so much.  

    You have given me such good info and thank you for letting me know what to expect.

    Love Inanna

    I know that I don't know
  • Hi Inanna, I so regret they sent you this info in a letter, rather than talk things through with you. I wouldn't have had a clue what the abbreviated letters meant (other than the marvellous sentence about the Thorax CT)  thank goodness for Rily. Hopefully when you get your outpatients follow-up you will meet your CNS and I am asking the universe to send you a really really wonderful one. You deserve someone who will take the time help you think through the various options. Luckily there are so many different treatments possible for bladder cancer, and many of us on here who have lived to tell the tale. Sending hugs Hxxx