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possible bone mets

19 REPLIES 19
pollym
Member

Re: possible bone mets

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.

Thanks

Pauline xx

 

dawnhc
Member

Re: possible bone mets

hi gooseberrygirl,

 

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.

 

Dawn

gooseberrygirl
Member

Re: possible bone mets

Hello Ladies,

 

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 !!!

Kenni
Member

Re: possible bone mets

Hi Lej81
I totally agreed with you. We should have regular scan regardless whether it comes back or not rather wait until something happen.

LEJ81
Member

Re: possible bone mets

Thanks so much for responding - it's the unknown that's the worst. I cope with everything, no matter how bad, once I have the facts. But my imaginations a scary place when you feel a twinge or a bump. Wishing you good luck with your treatment - I just wish they'd do before and after treatment scans rather than this wait to your yearly mammogram etc.
Kenni
Member

Re: possible bone mets

Hi Lej81
I am really sorry you have to go through this anxiety. I can only tell you my experience.
I only found out my secondary when I have pain down my armpit to my waist. On several occasion I have back pains which wouldn't go away even after painkiller but dull the pain only.
Like you I have been complaining to my oncologist that my ribs are aching after my primary treatment but he said could be gallstone which is quite common if you have tamoxifen.
Because of the back pain he sent me for a blood test, a ct scan and a bone scan. It turns out the cancer has spread to my ribs and liver now. Starting chemo all over again.
Hope your pain is just what the breast cancer nurse said - after treatment pain.

LEJ81
Member

Re: possible bone mets

Thank Lucy, my appointments tomorrow. X
Lucy_BCC
Member

Re: possible bone mets

Hi LEJ81 and welcome to the BCC forums

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

Here's also a link to further support ideas from BCC which you may also find helpful:

http://www.breastcancercare.org.uk/breast-cancer-services

Take care
Lucy BCC

LEJ81
Member

Re: possible bone mets

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.
imac55
Member

Re: possible bone mets

Just re read Marie, and I too have a bone island. Do you think it's a sunny place with a beach?!
imac55
Member

Re: possible bone mets

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

Mindy63
Member

Re: possible bone mets

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.

imac55
Member

Re: possible bone mets

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.

Mindy63
Member

Re: possible bone mets

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.

Julesie
Member

Re: possible bone mets

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!
imac55
Member

Re: possible bone mets

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.

Guest user
Not applicable

Re: possible bone mets

Hello Imac55.

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!

 

 

lucinda
Member

Re: possible bone mets

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

 

nicky08
Community Champion

Re: possible bone mets

Hi

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.

Nicky

imac55
Member

possible bone mets

Hi Folks,

 

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'.