Hi Ladies, I am absolutely fuming. I went to see my onc yesterday for a check up. I have a few times approached the subject of me having a MRI scan, he has refused in the past, so yesterday i asked him again and that if he wouldnt send me for one i would pay for one myself. He went on to tell me that there is so much radiation in a MRI scan that it could cause my muscles to deteriate. He said he would send me for a blood test instead which would make sure everything was ok. I came away happy with everything, came home got on computer looked at MRI scans to see the disadvantages and NOWHERE does it say anything about radiation or muscle deteriation, in fact it has no radiation at all, its one of the safest forms of scans even pregnant women can have them after the first 3 months. So why did he lie to me? So sorry but i am so angry.
Could it be the case that your oncologist has looked at things and thinks a scan would not show anything up? I contacted a friend of mines who is an oncology Professor specialising in radiography when I was part way through my treatment and I asked whether or not I should have had any scans,as all I was given was a blood test and a chest x-ray on diagnosis. He told me in his opinion no, because a cancer has to be the size of a small fingernail before a scan can detect anything; smaller than this doesn’t show up apparently. If you have had bloods taken throughout the treatment there will be certain things in the tests they keep a check on.
Can I ask why you are asking for an mri? Do you have any symptoms which need investigating? It’s standard protocol not to have more tests than necessary, and scans, mris are only done if there is serious cause for concern. It sounds as if your onc is trying to be diplomatic with you-if you have not presented with any symptoms, then he has nothing to investigate!
They did say that unless I have symptoms that they would not give me a scan but I am 2 years on since dx. I have never had any blood tests since my chemo nearly 18 months ago and no scans apart from when dx for chest xray for surgery and a recent bone density scan because i have had my ovaries and womb removed aswell as both my boobs. My concern is that when I was dx I had spread to 2 of my lymph nodes and when I had 2X masectomy there was pre cancer cells in my good breast, although i feel fine in myself I am anxoius about it spreading to other parts of my body. I can cope with him not wanting to do a scan but to lie to me giving me false imformation I think is not fair. The blood test he only gave me because I pushed for it in his words he said “We wont be doing blood tests on you every year this is a one off”.
I can understand your anger, Doodle. I always remember my BC nurse saying to me ‘I will never lie to you, what ever you ask. Otherwise, what is the point to my job, you have to trust me’. And the same should be said of onc’s, even if it hurts our feelings they should be honest, else how can you trust them in the future. If you are not happy with him, you could always try asking to be referred to another onc.
I am shocked too at what your Onc said.There is no evidence to show that MRI is harmful.Even in the first 3 months of pregnancy it is mainly a precaution.
Its disgusting that a Onc would give such misleading info.I would be tempted to write to him asking him to clarify what he said in response to your request for MRI.Would love to read his reply!
Did you mean a breast MRI or “whole body” MRI.
*Edit* I see you have bilat MX so must mean body scan.As far as I am aware there is no such thing as whole body MRI as each area has to be scanned in a particular way.It would be a a very long involved procedure to do brain,chest spine abdo and pelvis.Cherub is right any tumours elsewhere in the body would have to be a certain size to show up and many normal “abnormalities” would be flagged up.Certainly the NHS would likely only scan an area with symptoms .MRI is not used routinely as a “screening tool”
Thanks for your replies ladies, i did mean whole body dotchas mainly my head as i have these “funny do’s” that i had before i was dx but even to him is not enough of a “symptom” for him, thats why i said i would pay for one myself to which is when he informed me of the so called radiation and damage it does to the muscles. I have the brca2 gene aswell which is another reason for my concern. I might just write that letter. Thanks again for your replies.
I was Stage 3, HER2+ with 1 lymph node affected out of 22 and I was originally diagnosed with a benign fibroid (long story, the fibroid was large and was hiding the tumour).
I can’t recall having a blood test done to do with my cancer treatment since shortly after I finished chemo in 2007. I finished Herceptin in April 2008. The only other blood test I have had was routine as I had to to go for a gynae check a few months back and it was to confirm that I’m now post menopausal.
All I get is a yearly mammo and a review appointment with a breast Consultant at a clinic on a different day to the main breast clinics. As long as I feel well and I keep a check on myself I am fine with that as they have told me if I presented with anything whilst I’m still in the remission period I would be seen at one of the main clinic sessions within a week.
There is more harm from mammograms than MRIs yet somen women cannot get enough mammograms! It’s not as if they are even worth suing on BRCA carriers.
Anyway, stand your ground if it gives you peace of mind. Too many who have been fobbed off have had late diagnoses of verious kinds and sadly the evidence is here on these forums.
the problem with scans is that they don’t necessarily give you the definitive answer you want. Like someone else said an MRI is usually carried out for very specific areas eg. spine or shoulder or brain etc.
I had bad headaches which had started prior to diagnosis and been going on a long time. I had a brain CT for that. I also had bad back pain which had been going on for months and did have a spine MRI. The problem is it showed some very small things which they have decided on probability are benign. I now have the angst about that.
Because of my lymph node involvement (9 out of 17) and the size of my original tumour (6cm) I had a chest and abdo CT. This showed up something on my liver which they also think on probability is benign.
However if you are having specific symptoms then I can understand why you would want a scan. Do you have a good relationship with your GP and can you discuss your concerns? You could ask to be referred privately to a different Onc if you wanted and get the scan. The best thing though would be to get your Onc on side about a specific scan. Can you keep a diary of your symptoms so you can show him in detail how frequent they are, what you experience etc.
Scans are very expensive - I had my first chest/body CT and bone scan privately because I had such a long delay following biopsy and that came to just over £1000. Not sure of the cost of the MRI but I think they are more expensive.
I do think though there is no excuse for lying - it’s patronising and assumes that we don’t have the brains to look on the internet!