Advice please-very stressed and worried

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Dear all,
i would be so grateful for any support and advice.

I was dx 2004 (IDC, DCIS and Pagets right breast -mx,rx, arimidex and risk reducing left mx).

Back in May 2011 I saw the breast team as I had found a node in my neck (opp side to ca). The surgeon said that I should have an ultrasound and probably a CT scan. He then changed his mind about a CT scan and said that he would decide on the results from the uss.
Had ultrasound done and this confirmed an enlarged lymph node but nothing suspicious seen.
The surgeon advised a follow-up CT scan of my neck after 4 months. I recieved my appt for this (it says with contrast - why?) and it is on 11/09/11. However, I have also been aware of a discomfort over the right side of my ribs, on and off, which has been difficult to pinpoint the exact location - not sure if it is under my ribs (so of course I am panicking that it’s my liver).
I rang my BCN last week and told her I had the appt for the CT scan of my neck , and then told her about the pain around my ribs, and that did she think the scan should also include my chest too? She said she would discuss with the consultant, rang me back + said yes,and this has been added to the scan request.
In the meantime I had convinced myself that my liver should be scanned too, so now I am due to have a CT scan with contrast of my neck, chest and abdo. I am beyond terrified.
Well, I’m now stewing because I realise that this will be giving me a big whack of radiation, and wonder if this can be done using MRI instead?
So, in even more of a lather, I rang back long suffering BCN, told her my concerns, and then started worrying that should I be having all these scans without even being examined by a dr? (really terrified of what will show up). She very kindly arranged for me to be seen by consultant in clinic today.
Went along today (thought I was going to be sick- so worried about it all) and when called in , was seen by a registrar I’ve never met before, which threw me a bit (consultant “too busy”).
When I tried to discuss my concerns,especially the fact that all these extra scans ordered after discussion on phone rather than a physical examination, she accused me of disrespecting the decision of the BCN! I explained I certainly wasn’t, just that I wanted to make sure all the requested scans were necessary as my symptoms were a little vague, and that the discomfort over my ribs has now developed into an actual tender area on palpation (? bony). And if necessary, could it be MRI instead?
She appeared annoyed and then said it was up to me if I wanted to have the scan done or not. She was very dismissive of the amount of radiation from the CT scan, and couldn’t explain why CT was preferred to MRI ?

I’m so sorry to ramble on like this. I am absolutely terrified about the thought of secondaries, the thought of being put through these scans uneccessarily, arrgghh.
Please, any advice would be so appreciated.
XXXX

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first of all that doctor needs their wrists slapped. I thought everyone working in a breast clinic knew how vulnerable patients are, and how their concerns are very real and should be dealt with using patience and understanding. You are not a radiologist and you asked about the benefits and disadvantages of proposed treatments as is your right and they should have answered your concerns.

Basically the radiologist knows which type of scan works best on different parts of the body and which one shows up best the thing they are looking for. They know the worries about extra exposure to radiation and only recommend a Ct scan if the MRI is not good enough. The contrast is using a die to show more detail. In away your are lucky it is ordered 1st time because some places do the scan without contrast 1st and then if its is not clear enough order a second scan with contrast.

What you need now, is quick accurate answers to what the pains are and I would suspect if the doctor had explained it properly you would be re-assured that they were doing everything they can to get them without forgetting about the possible risk

Here is an artical about the risks and benefits.

uk.reuters.com/article/2009/12/15/health-us-cancer-radiation-idUKTRE5BE65320091215?pageNumber=2&virtualBrandChannel=0&sp=true

and hereis a website about all the different types of scan. This link compares the two types, but if you look at the tabs down the left there is masses of informtation about radiation levels and risk. It is american but i bet its the same as the uk

ct-scan-info.com/mrivsctscan.html

I might be wrong, but i dont think the radiation you get on one part of the body gets added to the blast you get on another part. Radiation is not like a drug that goes round your blood stream and has to be got rid of. If you had two blasts in the same place then that is worse than one blast there, but getting a second blast somewhere else does not affect the site of the first treatment. That is how i understand it.

But you are perfectly right to ask questions and express your concerns.

This might be another good one for the help line. I bet they can talk you through it and they do have time to explain things and I doubt if they think any question is silly and un-neccesry.

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dear oldandlumpy,

thank you so much for your reply - the sites were very useful.

i rang up my BCN today, and stupidly burst into tears and got into a bit of a state (what am I like). I just feel that I have no control over what they are deciding, and they are not really bothered about my concerns - put up and shut up basically!

I just want someone to say that i need a CT scan instaed of an MRI because… but no one can!

What sort of scan has anyone else had?

XX