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.
It is horrid when you have had a lot of breast cancer and treatments because your mind is always going into dark places and wondering if every pain it IT back again. Sometimes it is, and other times part of the normal aches & pains we all get. Do you have a BCN (breast care nurse)? It might be an idea to have a word with her and tell her worries and ask her to find out what 'satisfactory' means with regard to your blood tests. They are very good at liaising with your oncologist/team - or they should be!
CT & PET are completely different types of scans and I think because of expense they dont often use PET scans unless it is necessary.
I recently, (1 Month ago) went for my yearly onc check, I had a blood test and received a letter saying results are "Satisfactory" ?????, Has anyone else had this?and does that mean Cancer Free ?
I had Mx in 2011,Chemo and Rads, Tamoxofen.I had 14 Lymph nodes affected, I had a further Mx In Sept 2012, as had pre cancer cells there too, Had a X ray and Bone Scan due to pain in Ribs and chest on Left side, they said it was OK .Prob due to 6 weeks of Radio Therapy? That was about 6 months ago.
I now have a persistent pain on Left side, Do not want to go back to ONC as feel as if I will be classed as a "Worrier" But in Truth I am really worried about recurrence as feel my chances are high due to so much Node involvement. Have never been Brave enough to ask ONC what are chances of recurrence
I am struggling in my job as I do Split Shifts as a Chef and my Joint Pain is Crippling, Is a CT scan a PET scan and is it worth pushing for one and who would you ask G.P on ONC, could do with the " Satisfactory" clarifying ?
Sorry to Ramble on !!!
Hi Marie, thanks for your reply. Sounds like we are both feeling the same at this stressful time. Always good to know you are not alone, but not good that we still have to go through this. I saw a different doctor this am, and though I am really pleased that she managed to explain the results much better, and she didn't say I def didn't have mets, she tried to be as positive as possible. I will be having a bone scan first, then physio if appropriate (i.e.no mets), and scan should be within 2 wks.
So it's moving forward, but I feel so stressed and emotional, can't focus on anything else. Been here before, and know it's one of the hardest parts of this illness, the waiting game. Keep in touch Marie, and hope all is well with you x
imac, that sounds awful. I would def ask to see a diff doctor.
The waiting game is so stressful. I am a wreck. Ended up crying at doctor's surgery today.
Have a 2 week wait before bone scan. Just want to hibernate until then.....and even then not sure how much I'll trust results.
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.
Now totally stressed.
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.
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.
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!
Hi I was dx with bone mets from day one 4 years ago. Mine were found via a bone scan but x rays can show quite a lot, I had a normal x ray prior to starting rads recently. As Nicky says do keep pressing until you get an answer. It may be nothing, many pains aren't, I had lots of pain which turned out to be sciatica. I know how hard the waiting game is, I also know that people do not understand the significance of cancer spreading or becoming stage 4. My family still think each treatment will make me cured, even though I have expalained to them it is not curablenbut only treatable.
I was dx with spread to liver last December so really understand how worrying things can be. Good luck and I hope it turns out to be no more than an ache and pain. x
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.
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'.