Hi everyone, just wanting some advice & reassurance on whats going on with me lately.
I was diagnosed with IDC in February this year, had surgery in march for a 26mm tumor: E + her2 negative. No lymph involvement and margins clear. I was supposed to start radiotherapy this month but could not tolerate the pre treatment CT scan due to new shoulder pain and being unable to raise my arm.
The shoulder pain started in April time, gradually getting worse to the point i cannot sleep on that arm & is worse during the night. Ive had the lower back pain for over a year which is now so bad its limiting what i can do. Both areas of pain are a dull ache, dead arm type feeling & the more I do the more the back pain is horrendous.
I met with my consultant mid june who reluctantly ordered a bone scan. He first advised physio & then go back to see him if that didnt work. Its only because I pushed him to order the scan that he did.
I had the scan 10 days ago. The technician said the scan would last around 30 minutes, I was in there over a hour and told they needed to ct scan me afterwards which they did. The results they said would take around 2 weeks however, I received a notification on my nhs app yesterday with a new appointment with my consultant in September!! 8 weeks away!
im at loss what this appointment is for & surely they wont make me wait that long for the results & does this mean everything is clear on the scan? Im going to contact my BN on monday but my heads a mess with it all & looking for advice or wondering if anyone has experienced the same? Do bone scans usually last that long & are ct scans routined following the bone scan? Has anyone had delayed results like this?
thank you,
Paula
Hi Paula,
I presume that it was nuclear bone scan? They do a lower definition CT scan at the end of that normally on the same machine. Was yours on the same machine?
Are you on hormone blockers because they can cause a lot of pain as they affect not just the bones but everything. I've had many side effects including osteoarthritis, bursitis and a torn rotator cuff, which I was told was more common on them. Some of my discs now also have a slight bulge, all in the last couple of years. This causes me pain, and I've had MRI scans and Ct scans which only show these and apparently nothing 'sinister'.
I waited a long time for some of these results even though they were in, and in fact was told the results of one scan by a physiotherapist weeks before I saw the consultant. It sounds positive news, but it's impossible to be 100% sure due to appointment mistakes, but hopefully your call will clarify things on Monday.
Hi londonmum,
thank you for your reply. I have been prescribed tamoxifen last month but due to the pain starting i didnt start taking them as i didnt want to worsen the pain as ive read about the side effects. I was hoping to rule out whats causing this pain first.
Yes, I had the nuclear bone scan, thats good to know the CT is part of the scan. I wasnt expecting it though and thought Id be in & out in the time they said.
i just wish they communicated a bit more before arranging appointments. Hopefully will get more info tomorrow.
thanks again for replying & i hope everything is ok with you.
Paula
Just a lil update..After speaking to my Breast C nurse she confirmed the results of my bone scan are in but she wudnt tell me them over the phone. She has said my appointment I had that was 8 weeks away is now arranged for next Thursday 25th & will find out my results then!
Surely if the scan was clear they’d tell me the results there & then on the phone. Im worried that something sinister is on the scan xx has anyone had to wait for results but they was fine afterwards?
Thank you,
paula
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