Hi all. I’m most probably just over thinking it but I’m confused and a tad upset with my BC nurse over bone scan results.
I had the scan 2 weeks before Christmas due to low lumber pain that was extremely painful at times, ok other times and even odd days pain free. BC nurse rang me just before Christmas to say everything was fine but it showed some degeneration in the lumber region which was age related. Obviously a very happy bunny and joked about getting old ain’t no fun! I am 68
Just seen the letter to GP today and got a tad upset and confused. BC nurse had said and I quote..
This has shown no convincing evidence of bone metastasis however there is degenerative pattern of tracer uptake in the vertebral column in the lower lumbar spine, specifically L5-S1 level. This has been evident on previous scans and felt to be benign in nature. End quote.
This is the first I had heard of any degeneration. I had a bone scan a year ago due to back and shoulder pain. All the letter said last time was “no evidence of any bone metastasis”. Not One word about degeneration!
The other bit that has slightly concerned me is her saying “no convincing evidence” this time rather than “no evidence” like before and also saying “felt to be benign” when talking of the previous scan and degeneration. It’s the word ‘felt’ thats niggling me and would have felt better if she said ‘is benign’ I have emailed my BC nurse and asked why I wasn’t told about the degeneration when letter indicates I have and previous letter proves that I wasn’t told. Also asked what she meant by convincing this time.
I know I may well be over thinking but it’s hard not to when you find things out and should have been told before.
I just wanted to ask here if this or something similar has happened to anyone else.
Hi Kumihima welcome to the forum and sorry to hear how worried that you are how confused and little wonder with the differences in terms. It may just be words to them but when we see it it takes on another meaning for us which could be the case here, I'm not sure if that is the case but just putting that out there.
I was told by my Oncologist that whilst on Letrozole I should have a bone scan every year so when I called my GP to get this arranged the GP contacted a Dr at our local hospital who said that this was not required in 2018 and 2019. Then low and behold in 2020 like you I started to get lower back pain and hip pain and my Practice Nurse sent me for pelvic Scan to rule out Bony metastesis as well. I knew that was a concern after the Breast Cancer but hoped that it wasn't. Relief, no sign of any hotspots was what she said when she called but I do need 2 new hips due to bone degeneration. Now I question how that has happened so quickly, as after the treatment I had a bone scan and it showed no problems healthy bones and quote the hips of someone half my age- 60 at the time. Then 2 years later I need 2 new hips I cant help feeling there must have been some degeneration before but not enough to worry anybody so not told to me.
In essence our stories are slightly different but with similarities between scans and how these are reported and what they tell us and write to each other. I can understand and appreciate why you would overthink though.
Thanks Gail. I was diagnosed September 2017. IDC 8mm lump, her2 +, estrogen 8. Had a WLE with clear margins and no node involvement. I know I have escaped lightly with such a small lump, found early and escaped chemo. 15 fractions radiotherapy. On Anastrazole which only produced side effects 18 months ago and know pains can be that but have to find out. As you say it can just be words to them but unless they have been where we are they don’t understand how things like the odd word can affect us when it’s a nurse or doctor telling us. sadly my BC nurse can be quite blasé and makes me think twice about contacting if I have the need. I went to see her once when I found a new lump and she said “I don’t know how you find these things!” I felt guilty until she examined me and she felt it too and she changed her tune. Ended up with ultrasound and biopsy. Happily it was a fat necrosis.
