Hi,
the story so far… BC Oct 2006, mastectomy, chemo, recon.
went to Oncologist a month ago because I had a sore burning type of pain on the left of my spine. Sent for xray which was fine. Then sent for bone scan which was also fine. Sent for an ‘urgent’ MRI the next day (last Saturday) and have recieved a letter back today saying that the Doctor has requested more images to be done next Wednesday. I phoned my BCN because I has asked her on Monday to chase up my MRI results and she told me that she had been told this morning that my MRI was all ok! She said she would check with the Doctor she had spoken to and get back to me on Monday. I then phoned the MRI department who told me that the Doctor wanted to do some ‘Stir’ images( a sequence on the MRI scanner) just to confirm everything was ok? Now then, has this happened to anyone before? I dont know what to think! am I being let down gently? should I be worried?
Clarabelle x
Clarabelle
Probably can’t help much, just wanted to respond! - Any of the waiting / tests / results / more waiting pallarver is a nightmare - and, you’ve had your share!
All I do know is - MRI is very sensitive, which is why it’s not used routinely as it would show so many false positives, causing the stress that you have now. I had an MRI as part of a trial when first diagnosed with DCIS. The idea of the trial is to compare information gained from MRI compared to “traditional” screening.
The MRI actually showed up an area of suspicion in a totally different part of the breast than the (already confirmed by biopsy)DCIS. The Prof in the department had virtually dismissed the DCIS area - which DID show up - but less so than the new area!!
I then had a week of panic - waiting for a second MRI and biopsy to this second area…when re scanned, it had virually disappeared! It was decided not to biopsy, as the opinion was that it was normal breast tissue, behaving normally, due to cyclical changes.
The prof did say, that they always did more than one MRI at different weeks in the cycle, when getting baseline scans for the family clinics, when there is the gene present.
Do you mind me asking - how old are you? - and are you pre or post menopausal?
Fingers crossed for you, Clarabelle - pointless to say “Don’t worry” - cos that is one of the things we do so well - let me know how you get on.
Take care
Lizzie XX
Hi Clarabelle
Afraid I don’t know about these particular images, but I really think that if there was cause for concern that you would have been told straight. I work with patients who have oral cancer and we are always upfront with them when we think there is something wrong. It is likely that your doctor justs wants to be absolutely sure and do different scans. I would really have thought that if they had seen something BCN would have said or certainly would not have said everything was OK - she would have told you to wait for results.
Having tests is the most horrible part of cancer as it causes terrible anxiety so I do feel for you.
Hi Lizzy and Cathy - thanks for your replies.
I am 46 and post menopausal after having my ovaries removed as part of my treatment (Mother had ovarian cancer). I have been tested for the BC gene due to family history which was negative.
My real issue at the moment is that I have opted for a risk reducing mastectomy which is supposed to take place next Thursday but my Oncologist wants me to postpone it until these MRI tests are completed. I very much want to go ahead with the op as I am going to the States in August and want to go with two matching boobs! AARGH I had hoped to be given the all clear by now so I didnt have this problem!
Clarabelle x
Hi Clarabelle
Typical - eh?! That is another rotten thing about this whole thing - you just cannot plan for months! I was supposedly going to America with my sister last May - but with the diagnosis early Feb - was no way could go.
Fingers crossed that you get good news, and can get away as planned.
Lizzie XX
Hi,
I have spoken to BCN who has arranged for me to get the MRI results immediately afterwards tomorrow so I know whether or not to go ahead with MX on Thursday Phew!
Clarabelle x
My fingers, toes, and anything else are firmly crossed for you, Clarabelle!
XX
Good news - the MRI’s were all fine - turns out the reason I was recalled for further images was because a trainee had done the first ones and hadnt done some of the sequences required!!
Off for risk reducing MX 7:30am tomorrow.
Clarabelle x
So glad for you clarabelle - if only they would explain these things we would worry far less.
Dawn
xx
Great news, Clarabelle, but…why, oh why!!! - can they not explain that to you before!! - do they not appreciate how stressful anything out of the straightforwards is?!
I’m really pleased for you - hope the op goes well - and you can start looking forwards to the States
Take care
Lizzie XX
Hi,
Well I did not have the op today.
Was all booked in, Surgeon had marked where he was going to cut, the Anaesthetist and Doctor had done all their bits when the Anaesthetist came back onto the ward and said that he wasn’t happy with my ECG and wanted me to have another one done before surgery. Well, to cut a long story short and 3 more EGC’s later he is still not happy and wants the Cardiologist to have a look. I asked him what the problem was and he said he thought I may have a blockage and may need a stent put in!! After picking myself up off the floor!! the Cardiologist arrived and said she wanted me to have an echogram done and that I could not have the surgery and that she would speak to me in her clinic later on in the day. Once all these tests were done I went to see her and she said that she wants to do a few more tests but believes my heart has been damaged by the chemo I had for BC!! She ended by saying that she feels it is safe for me to go ahead with the surgery but of course by then it was 4pm and the Theatre staff had all gone home so now I have to wait in the queue again! - Not the best day I’ve had!!!
Clarabelle x
Lots and lots of swear words…
Don’t know what to say, really, Clarabelle. You must be gutted. So sorry you’ve had such a S**t day.
What happens next?
Love
lizzie Xx
Thanks Lizzie,
gutted would be an understatement!! was ok all day saying things like its no-ones fault, and dont worry its one of those things but the minute we stepped outside the tears started to flow and I was inconsolable - I do believe in fate though and think somebody was telling me not to have the op today ( when I arrived at 7:30am I was told that my breast surgeon had been on call all night and so had passed me over to a surgeon I had never met to do the job so who knows!). I will phone my surgeon in the morning to see if I can have the op next week, if not then I will have to postpone it until after my holiday 
as it will be too close for a good recovery time.
As for the heart I will be having further tests, running on a treadmill whilst they monitor me those sorts of things.
Hey Ho never mind, this 3rd bottle of wine seems to be taking the edge off a really really c**p day!!
Clarabelle x
Glad the wine did the trick! - Hope the head was OK this morning! and yes - you just were not meant to have that op on that day! Which ever way it turns out - you will enjoy that holiday, did you get any news on a new date today?
Take care - have a good weekend
Lizzie XX
Hi,
nope no headache this morning - I can drink like a fish and not get a hangover which is just as well lol!
Spoke to plastic surgeons secretary this morning who phoned me back to say that he is trying really hard to get a date for next week for me - he is just the best surgeon a girl could hope for, kind, caring, sensitive and good looking too! and to top all that his plastic skills are beyond excellent! So today I am feeling much better! she is going to phone me again on Monday to let me know how he has got on.
Enjoy your weekend everyone,
Clarabelle x
I guess I’m a little delayed in this discussion, but my mum has just been recalled for an MRI. All these tests seemed to have been done so fast and considering the NHS we’re a bit panicked! I’m trying the be positive but I can see her terror and I’m not sure what to do. There are so many platitudes I can give before I stop actually believing them any advice.