Well it’s been a while since I have been on here. I was diagnosed with Bc in Oct 2006, Mast, rads, chemo, tamox. I am part way through a 4 stage breast recon, with next op due in Dec. A recent visit to the GP with calf pain has lead to tests for spine mets. Started blood tests, and xrays tomorrow.
I am feeling very vulnerable and delicate. I have mentioned these facts to 3 people very close to me, and it’s weird, all 3 just completely overlooked what I said. None of them even said, it would be fine. Don’t know what to think.
Also, is a normal xray adequate to show up mets? Want to just curl up and sleep. Can’t face work, but have a new job so can’t take time off. Having flashback memeories of the ‘waiting game’.
Sorry you have had to come back here with some worries about mets. I have bone mets (for 5+ years) which have now spread to my liver so know only too well how the waiting game is played! My bone mets had been stable for 5 years until last year when I also developed a nerve type pain down one leg. I was worried about progression of the mets but an Xray, MRI and CT didn’t show any nerve damage or pressure points, although the two scans showed progression (and also the liver mets) Therefore keep pressing for answers, my onc was totally gobsmacked when the scans showed progression, and only requested the MRI and CT because I insisted. Having said that many pains are not caused by mets however the worry will be there until you get a definite answer. Good luck and hope it turns out to be nothing BC related.
As Nicky & Lucinda said, press for further imaging if xray shows anything suspicious, so you get a proper differential d/g. Hopefully you do not and will not have bone mets.
I have bone lesions which show up in spine & pelvis 4 years after original d/g with both primary & sec. bone mets. The lesions haven’t changed - it is still an uncertain diagnosis, but I’m now considered unlikely to have mets.
I received the notes today from a recent ‘complaints’ meeting with medics. There were several concerns of mine to which they responded. One is to do with imaging:
“Dr. - (consultant radiologist) explained that the (original) diagnosis of bone metastases did rest solely on the initial CT scan appearance. It would have been standard practise to also stage the patient with an Isotope scan. This was not done at this time. There is no documentation in J’s medical notes to explain why this was not performed. Dr. - explained that if a bone scan had been undertaken and had produced a negative result then it is likely that the diagnosis of bone metastases would have been put in doubt. It is also possible that an MRI might have been performed for further evaluation”.
I have quoted this because it is so important to get as much evaluation as possible, to confirm a d/g one way or the other.
Over time I have had lots of various scans - the interpretation became ‘possibly benign condition, but probably bone mets’ (in the light of my having breast cancer). Now the d/g is ‘tenuous’, because the lesions haven’t behaved the way they would expect them to, so it’s probably benign!
Thanks ladies. I have been told I have sciatica, but as there is no obvious sign of slipped disc or spine abnormalities visually, and with my BC history, I am being checked. It could well not be Mets, but I have a bad feeling about this. Trying to keep busy.
Hi
Sorry to hear that you are going through a worrying time. It may be worth asking for a PET/CT scan which can detect things much earlier than bone scans or X-rays. When my initial single bone met was picked by a PET scan almost 2 years ago, the bone scan was actually clear. Sadly I’ve recently had progression in more bones and the liver which was picked up on a PET/CT scan. The lesions were identified on the PET scan but reading the report, some were described as ‘occult’ on the CT scan as they could not be seen. The waiting period is awful but I do hope that yours is a false alarm. Good luck!
imac I know exactly what you are going through! I have just had an x ray which came back with a ‘bone island’. The onc says she is not a bit worried but I’m getting a bone scan to put a full stop on the investigsation. I am struggling to think of anything else. My hip is painful and I too have a really bad feeling even though the odds are stacked in my favour (still getting herceptin/tamixifen, no lymph nodes involved). Lets keep everything crossed for each other.
Well I have just had results, and not that happy. Saw a dif doctor, who had a thick foriegn accent, and think she maybe can’t read English too well, as the report from xray was up on screen, I read it, well most of it. She said it said absolutely no chance of bone mets. It actually said …and therefore bone mets can not be ruled out completely!
I queried this and she re read it. She also said I didn’t have sciatica as my symptoms weren’t correct for this, and it was probably muscular, and the test where they straightened my leg was not painful. It was, and the prior doc said this confirmed it!
Apparently next stage is a bone scan, but have no confidence in her I’m afraid, so think I’ll re book and ask for a senior doc in practice, particularly given what was said by a contributor on here re bone scans.
Obviously I do not want to wish this on myself, but if I have Mets, I want treatment asap.
Hi ladies never used the forum before but I’m going out my mind with worry. I had aggressive bc back in jan, t2n2m0 when I started treatment. I had a bone scan to check for bone cancer which at the time was clear. Completed surgeries, chemo FEC-D (which hit me really hard with month hospital say) which finished in July, then radio including boost in Sept. I’ve not got pain in my rib (same side as tumour and lymphs which were removed) shoulder arm and hand - worse at night. Called my nurse two weeks ago and felt fobbed off with her saying it was still early days from radio and to take anti-inflammatory like ibru - which did. The pains still there. I called back yesterday and explained my concerns as pain is worse (much worse) at night. Now got an appointment at breast unit for Friday. But just wondered if anyone can tell me symptoms who has secondary. My mums best friend has just been diagnosed with secondary bc in bones, and as much as I’d like to just be a hypochondriac I have a bad feeling about this one. Nurse kept saying you are cancer free, but how can they know. I’ve had no follow up scans or tests since having surgery, chemo or radio, only blood test was specifically to check thyroid and fertility (suffer from under active thyroid and I’m 32 with no children). From having the bone scan and lymphs removed there was a period of 15 day, so it’s not impossible that the cancer could have travelled past the lymphs - Am I being silly? Spent last Christmas waiting for my diagnosis… Fear I have another wait ahead of me.
I am sorry to read that you have this worry, in addition to the support you will soon have here please feel free to call our helpliners for practical and emotional support, lines open 9-5 weekday and 10-2 Sat on 0808 800 6000
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Hi all I have just noticed this thread - I had posted in the bone mets thread but perhaps this is better here?!!
I posted a couple of weeks ago as I was going for a pet-ct scan. I had pain in my right arm and weakness, and have also become sore over my left chest wall area. I got my results today and my onc said that ‘nothing dreadful’ has been reported. In the areas I had symptoms nothing was highlighted. However, there was mild uptake in my right hip which they cannot discount - they cannot say it is not a bone met. They are therefore going to have a team meeting with experts to look in more detail at my scan - she said I may be sent an appointment for another scan but she wasn’t sure about this as it depended on the radiology expert. In any event I will have a repeat pet-ct scan in 4-6 months. I have also been put back on Tamoxifen which I finished last year after 5 years. She is doing this no matter what my results due to the fact that research now shows a benefit to take for 10 years as I’m sure you all know. She said if it is bone mets that the Tamoxifen will be good for treatment anyway. I am seeing her again in 4 weeks to discuss any further scans.
I don’t know what to think really - at first I was really pleased as I have had a bad feeling over the past couple of months and it seemed like good news. On reflection I suppose I am now worrying about what this area could be. I thought that the combined pet-ct scan made it much easier to discount false positives? I wonder if any of you have any experience of this which you could share with me.