Hello spiritlove and thanks for posting, 

I am sorry to learn about what has been happening, waiting to find out test results can be an especially stressful time and it sounds like you are in the thick of it.  

I'm afraid I don't know why the consultant didn't get back in touch with you after saying he would and I can't explain the change of track with the contrast medium, but try not to read too much into it - this may well have more to do with NHS pressures than anything else. 

I can understand how a change in plan can be unsettling, bear in mind that CT scans without contrast can still have some value (despite what the consultant said) or they wouldn't bother with them.  And if there is a delay in arranging scans with contrast, then it is probably better to get on with a regular scan so they can plan any treatment assuming it is necessary.  

I follow the logic of asking to get all your results at the same time and hope your appointment comes through soon and they can fill you in then. 

Please give us a ring if you want to talk anything over, the number to call is Freephone 0808 800 4040 and we are around weekdays from 9-5,

Wishing you the best,

Julia 

Hi Julia thank you for responding and trying to help. 
 

I actually for the first time on weds just gone spoke to my consultant on the phone. There had been emails back and forth between myself and the breast care nurse , she just never answered any if my questions and kept throwing up confusing contradictions etc , in the end she told me to contact the consultants secretary after she booked a face to face appointment for me to see the consultant next day to discuss any concerns and clear up any confusions regarding the CT scan etc. 

i told her due to not having slept and being very difficult to go out due to my sons care and alsorts could he not ring me instead, she said contact his secretary. Anyway my sister contacted her for me as I was just almost on a heap on the floor! Also didn't want my biopsy results until after my CT scan.

I very nervously and anxiously sat and waited for his call, he rang and he said he'd been off sick for the past two weeks chest infection, he said weren't you supposed to be sat with me right now in my office, I said I said I couldn't make that did they not pass the message on, he said no.

anyway he said I've deliberately nkt looked at your biopsy results yet cause you don't want to knkw them yet, he was really lovely, anyway he apologised for all the miscommunications, I said the radiographer said you were writing to my Gp for pre meds for the contrast dye and you wouldn't do the scan without the contrast dye, he said who told you that ! I said you did through the radiography , he was a bit eem taken back, he said no , not at all, he said you can have the basic scan without contrast, that's all you need, he said it is advanced breast cancer (which I knew already from the breast clinic) he said it's what we call a T4 , I said what stage 4, he said no absolutely not! A T4 is the tumour has made its way to the skin fungating tumour and spread locally to lymph nodes , it means thsat there is a higher risk coikd have spread to the liver but the CT scan will tell us that, if it picks anything up, but hope to god it doesn't, then an MRI will have to be done of your liver. I said if it has then there's no hope , he said no we can treat it but will change the way we treat things like targeted therapy for thr liver.

he said the order of treatment as it stands currently is surgery (mastectomy) chemo and then radiotherapy , and then depending on if it's hormone related then treatment for that too.

I couldn't believe he was so sure without looking at my biopsy results, he did say he looked at something on screen , which could only be the ultrasound they used to do the biopsy. As far as I'm concerned he's given me my biopsy results without actually giving me my biopsy results! Anyway I asked if possible is it secondary breast cancer, he said no it's definately primary , I asked if it was Inflammotry breast cancer, he said absolutely not , no.

part of me thinks he seen my biopsy results but he sounded genuine when he said he hadn't. He's been doing this 30 years and he's very highly qualified.

Spirit 

sorry to hear you had a diagnosis, you did say you thought so but I'm hoping you feel more settled thst this can be treated you got this love Lara 

Hello and thank you for getting back to us.

I do think you need to be reassured by what your breast specialist doctor has said to you about your situation. He has been open and given you an update that I think is valuable and hopefully is helping you understand what is happening.

I hope you have support during this time and remember that you may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

Take care,

Caroline