MRI and waiting

Hello and greetings to all xx

I am waiting on the transplant list. I have two tumours. So far I have had two TACE done. The first did not work too well. The last measurements were 2.6cm and 1.5 cm.

My second MRI was done in September and the scan was done last week. I was very scared as the bigger one is near the top measurement of 3 cm. SO, I phoned today to ask for the result as my appointment is not until 20th November. I was told the doctor is on leave but he is sending the results to London to the MDT. When they have seen them he will arrange an appointment to see where we go from here.

Of course I was hoping for “The tumour shrank a little and we will meet again” or “it has not changed we will meet and discuss options. “.

I feel like I am in limbo again waiting to hear, and wondering why it is being sent to London first? This did not happen after the first TACE when it had not worked too well... I am feeling pessimistic thinking it has not worked and grown again, over the 3cm which is why it has been referred to MDT in London. Am I just being a pessimist, should I be worried? I know there is nothing I can do about it. But just when I was coming to terms with living each day as it is, I feel like I am drowning in fear again...

Is this where they take me off the list ??

[alfredthegreat]

Hi again. My tumours were 4cm and 2cm. After second TACE they shrunk, that was in January 2015 after that they were stable right up until my transplant 9 weeks ago. I was on the drug sonaferib over this time until the drug trial ended suddenly july/august last year. The reason given for the ending of the trial was that there was no conclusive evidence that sonaferib was any benefit when taken alongside TACE procedures. So from that you can only conclude that it was the TACE that shrunk the tumours and that TACE and change of lifestyle kept them stable. My first TACE showed little improvement but the second time really made the difference. So keep that chin up. Hope this has been of help. I'm sending you cheer up vibes and a cyber hug. Alfred

[Hidden in reply to alfredthegreat]

Nice one alfred!

Try and be positive pearl... very much easier said than done. !!

Miles

🇧🇧

[Hidden in reply to Hidden]

Will do thank you.

[Hidden in reply to alfredthegreat]

Always wise words Alfred as in my school report I must try harder.

[Hidden in reply to Hidden]

Lol pearl 😁

[alfredthegreat in reply to Hidden]

I know that it's not easy when you're going through this because your mind is working on overtime. It's a great site here though for help and support, I just wish I had known about it pre transplant. Keep that chin up x

[GrannyDoll61]

It's an up and down journey and you just have to keep the faith xxx

[Hidden in reply to GrannyDoll61]

Thank you grannydoll61, just wish they would say ASAP instead of the endless waiting.