Advice wanted

Hi Deb1E, I'm sorry to hear your news, but like you I'm confused how did your oncologist get it wrong? you need to speak to them and ask why apart from the liver they said you we're all clear. maybe get back on treatment? you still need answers, can you ring them now or do you have to wait till tomorrow? again I'm so sorry,

xx

Hi deb1E well I am confused as well I totally agree with what Devon cat has said you definitely need to call them again although you have recorded your meeting you still need answers keep us informed big hugs xxx

Hi Deb 1E,

It seems to me that the left hand doesn't know what the right hand is doing! Like others have said, I would get straight on to your Oncologist ASAP and ask if she saw the ones on your lungs! I have heard of this before and the Oncologist hadn't mentioned them because they were not big enough to actually measure but if she did see them, she could have easily explained that to you. Even kept you on chemo for slightly longer.
She has no right so ever to hold information back from you! I would tell her what a shock you got when the liver consultant mentioned it!! She is meant to be on YOUR side and you cannot make an informed decision without ALL the facts!

The other thing is, if the ones on your lungs are very small, this shouldn't hold you back from having the surgery to the liver, especially if they can do it via Laparotomy! 
It is hard enough to cope with a diagnosis without her making things worse for you.

I wonder can you maybe tell I'm annoyed on your behalf! I'd wipe the floor with her! Good luck!

Hi Deb1E

It's a shame we have to fight sometimes, for what seems the most obvious treatment. I was so annoyed that I could not be operated on, even though I know it can grow back. I had thought of pursuing options abroad but that can't happen during Covid. I am hoping that you receive the help you need.

Take care xx

Hi All

Had nice email from liver specialist on Friday to say hew is going to discuss w my oncologist when she is back from holiday.  

Hi Deb1E,  Thats a start! When does your oncologist get back?

Please keep us posted!

Hi all

Not been on for a while as other family health issues have got in the way.  Was telephoned by oncologist when she came back off holiday she said she had been asked to attend the liver surgeons weekly meeting (something she had not been invited to before??) and the outcome was I would have a CT scan and if ok I would have a liver MRI and if ok they would do the surgery but her clinic letter to the GP only says that they would consider surgery which is a bit different.  In any event I would have a clinic appointment on 18th November but it was down to me and how my cancer was behaving...  Had CT within days but not heard anything since - no MRI and no clinic appointment. I have tried calling the clinic nurse and left several messages but waiting to hear back from her.  I feel guilty if I chase too much as they have other patients but the silence is deafening.  For the first time I am struggling to feel positive, I get off to sleep ok but then wake up early hours and that's it for the night.  I am not sure if its the not knowing that's getting to me or what they are going to say when I do hear as no other options for treatment.  xx

Silence is an issue. My heart goes out to you. As you say there's a fine line between nagging and letting things slip.

Try secretary if you have contact, at least they are there for admin 

I didn’t get anCT appointment so rang the dept and they said it had been requested but were having difficulty fitting me in to have the CT the same day as the MRI as requested. She did then make me an appointment over the phone.

thry can tell you if the scan has been requested or not. If it has not been requested you need to go back to your oncologist and get him to request it 

love Ruth x

Hi Ruth

Shocking, the errors that are happening to seriously ill patients

Tvman xx