Ruth the post after mine is not the exact same as the one I replied to because you talked about slow release morphine in the first message. Did you edit your post in any way Ruth because if you do it changes the place in the thread which causes confusion(not your fault it is the way the dsite works). Anyone following this thread would think I had premeditated your message and even I am NOT that clever haha!
Hi Thumbie - just to add to what Valās said about morphine. Due to a reaction I had to dihydrocodeine they knew I wouldnāt be able to tolerate the āusual starterā morphine (MST / Oramorph) so I went straight on to oxycodone (oxycontin slow release and oxynorm break thru) when tramadol let me down. The dose I had to take to get pain control gave me brain fade, tiredness and really knocked me out- at its worst I had about 4 hours awake a day, and then it wasnāt me. My Macmillan nurse got me a referral to a palliative care doctor at the hospice, which was a bit scary but the best thing Iāve ever done!! He changed me onto hydro morphine and I was a new woman!! It was equivalent doses to the oxycodone but smaller numerically (was 50 / 60mg SR twice daily, went 'down to 6/8 mg with new drug but same pain relief). If that hadnāt worked for me he said there were alternatives. Morphine isnāt just morphine!!
Canāt comment on nerve pain - rads seemed to have worked reasonably well for me - sitting here with aching knee and thigh but nothing like it was before they zapped my hip.
HTH
Nina
What a lot of posts! Iāll say Hi to all boney ladies now and hope I donāt miss anyone out as I canāt now scrollback up as a new page has started.
Val - lovely go see you posting again, we all lured you back 
good luck with the results info at your appointment and fingers crossed nothing untoward shows up. Although you are obviously exhausted from what you have said it is nice to see your sense of humour hasnāt deserted you.
Good luck Claire with going back to work. It is a big leap back into the āordinaryā world so I hope it goes well and helps with getting your life back to some normality.
Sorry I canāt help anyone with pain relief but it sounds like the experts are helping out as usual, Val and Liz.
As to whether bone mets can sometimes not be bone mets Iām also exploring ths route. From my last onc appointment when I asked the āsillyā question about how they can tell I was told in fact itās very difficult to tell the difference between bone degeneration and bone mets. And, as has been said, a bone biopsy is the only fail safe way but that has risks. Iām waiting for a CT scan at my next appointment for further investigation, but I may ask my current onc for his opinion on all the scans Iāve had as i had a different onc when first diagnosed and I have had absolutely no changes in over 4 years. I may be clutching at straws but he said he had doubts with a few of his patients including me - in a good way of course 
Oh, and yes, they donāt always scan you (canāt remember who asked the question). I think it depends on your oncās approach. I have always been told that I would know if there were any changes! Iām not so sure about that but would be able to request a scan if worried. I suppose that our oncs do understand the nature of our own particular secondary BC and take the approach that may include not exposing us to unnecessary radiation etc that CT scans contain. I know my BC is slow growing so maybe thatās why I donāt have CT scans unless I ask for them?
Nicky xx
Thanks Nicky - it was me who has asked about scans. Realise after a nights sleep that I just get very over sensitive when I meet the onc. Donāt get me wrong - heās nice enough and obviously has hundreds of people to see but I just feel at the time I am dismissed without any explanations. I just have to get my head round he knows what he doing!
Chrisp1e - just to let you know strange dreams have returned!!! Must be the zometa. Had a rather lovely dream which involved me getting up to my knees in mud and this gorgeous man (not my hubby - no idea who he was) brought me fresh tights and odd shoes to change into as well as a nice cold beer and cake! He then proceeded to kiss me!!! All of sudden Dawn French turned up in a wedding dress with her daughter and I woke up. Completely mad. Wonāt be telling my OH about that one.
Love n hugs to all xxx
With regard to the the reliablity of scans. I would be very cross indeed if after subjecting me to potentially life threatening treatment, my Oncologist told me that he was not sure/never has been sure if the hot spots identified on my scans were metastases or simple degeneration (in fact I would be in touch with my Solicitor pronto, because that level of misdiagnosis would probably fall into the category of medical negligence).
My understanding is that metastases do appear differently to simple degeneration (and of course doctors and radiographers learn how to distinguish between benign and malignant conditions, from looking at thousands of images). Also doctors and radiographers look at scans sequentially and in context. If a suspicious area grows rapidly, or shrinks while the patient is undergoing treatment, the likelihood is that it is cancer - because simple degeneration does not happen that quickly and would not respond to cancer treatment.
LG - that is my understanding too of bone mets and scans. My last report for one of the scans actually states the mets are of the osteoblastic type (where the bc cells make the bone met grow rather than the other type (osteolytic - sp?) which destroys bone, although I have some of those too in other areas. I am going to ask about these in more detail when I see onc this week.
My onc does scans if I report pain/ache or if I havenāt had one for 9 months or so as Iāve been stable. There again she has looked after me for 5 years so knows about my history.
Off to Blackpool today for shopping in the delights of Primark and TKMaxx!!
Liz x
Hi Katie, I realised once Iād finished typing that it was you but for the life of me I couldnt remember your name but could see your avatar in my mind! I found it scary when the āsecurityā of 3 then 6 monthly scans was sort of taken from me but I certainly donāt miss the scanxiety!
LG - if you are referring to my comments about my diagnosis I agree with you about negligence but I donāt feel thatās the situation in my case. I needed chemotherapy for a recurrence so that was on the cards anyway which would be the only life threatening treatment Iāve had. Itās only now nearly 5 years down the line and having had no change that Iām questioning things as, I know what the scan reports said. Initial diagnosis from nuclear bone scan and further CT scans showed the areas affected and that, coupled with my local recurrence was enough in everyoneās mind to warrant a secondary diagnosis. itās only coming on here and learning other experiences that makes you question things. As I said Iām sure that my diagnosis is correct and I must just be one of the lucky ones that treatment is incredibly effective for, at this stage anyway. However, thereās no harm asking!
Enjoy the shopping Liz, enough to start up the gormless thread again?
Nicky x
Hi Jenanne,
Thank you very much for that - we are very similar in our diagnosis, although I have had 6 x Taxotere as well as the FEC. I was originally diagnosed in 2009, rediagnosed with mets in spine, hip, shoulder, ribs and liver in November 2011. I have been stable on Letrozole (Femara) and Zometa since finishing the Taxotere in March this year, but started getting hip pain in the opposite hip in September hence further tests and scans (I get results on Fridayā¦). My GP thinks it is a trapped nerve (due to overexuberence in the pilates class) but of course I am terrified. None of the other affected areas are hurting, bloods were all normal at last check and tumour markers down, but you never know with this damned diseaseā¦all we can do is stay positive, focussed and hopeful that very soon the doctors will make that breakthrough that we all need x x
Hi all bone mets girls. Have been feeling a bit low as well, so ahvenāt been on here much. Hope you are doing reasonably well.
I am still waiting for Denosumab to get funding from the NHS, so I can start on that one as Zometa gave me a serious allergic reaction. In the meantime I had another consultant appointment and mentioned the tightness in my chest - which my lymphoedema nurse thinks is pain from scarring - but they decided it might be either a recurrence under the sternum or further spread. So another CT scan next Wednesday and then the results the following Monday. If it is further spread, they sugggested a one off blast of radiotherapy.
BTW, my bonemets were diagnosed by chance. I had a CT scan for another condition and they reported back areas of concern on the spine, hips etc. I then had a bonescan and the consultant said that it was definitely bone mets and not arthritis - apparently they can tell the difference! He said in my case it was a bit like a āsnowstormā, with tiny bits all over my skeleton, so I suppose everyones dx are different. Apart from hairloss - apparently due to Letrozole, I tolerate these much better than Arimidex, so will stay on them for the duration.
Take care girls.
Charlie 5
I hope your results on Friday are good. I obviously donāt want the mastectomy on Nov.29 that they recommend, but there is a chance that I actually may not have bone mets after all and that the surgery will āsaveā me. I am lucky that my liver, etc. doesnāt show any problems.
It is strange though to have been diagnosed and treated for secondaries in bones for nearly 3 years and now to be told I may not have cancer in bones after all.
Good luck!
hi Thumbie
Canāt give any advice on Morphine-will be back asking for that when i need it but managing on co-codemol at the moment.I used to take diclofenac for nerve pain but when I was dx with bp the gp stopped it and switched me to gabapentin.The last few months I have had sciatica down both legs and then it started in my buttocks,so even sitting became a real pain.Went back to gp to ask for a stronger painkiller and he said the problem was the dosage of gabapentin was not high enough so he doubled it,my gp works at the hospice so is quite up on pain relief and i trust his judgement.The first few days on the higher dose did make me drowsy but the pain has almost disappeared and 2 weeks on I am tolerating it much better.As Val says I think we do have to give these things time to work,not easy when in pain I know.Hope it works for you.
L xx
Hello everyone,
Well, second morning at work. Monday was good, it made me feel normal again and it was nice to see all my old work colleagues. Iām feeling well but a little apprehensive as I have my three monthly scan at the end of November to see if the Arimidex is working. Donāt know if I feel up to working full time anymore though as I got used to seeing friends etc when I was on sick leave and I donāt want to over do it.
Hope everyone is ok today.
Love Claire
Hi Claire, thatās good news to hear that your first couple of days went well. Donāt overdo it though as I think we can under estimate how tired the treatments still make us. Can you go part time to begin with and then build up your hours if you want? Iām sure you know that cancer patients have the same rights under the disability discrimination act as disabled workers so your employers do have to make allowances for you. as you say a happy balance between work and social life would be good
Good luck to anyone waiting for scans or results, itās always an anxious time, so fingers crossed for you all.
Nicky x
Nicky I admit I was partly thinking of you - but also someone else who posted earlier. I still think that if a doctor subjects a patient to life threatening treatment when they are unsure whether hot spots on scans represent malignant or benign changes, they are probably guilty of medical negligence, I understand that the reason you had chemo was for a recurrence rather than metastases, but even so, aromatase and bisphosphonates still carry potentially life threatening side effects. In the case of aromatase inhibitors, Macmillan list some of the serious life threatening side effects as " cardiovascular disease, cerebrovascular disease (mainly stroke), bone fractures, thromboembolic events (blood clots), endometrial cancer (uterine cancer) and other new cancers (not including new breast cancer).<!-- google_ad_section_end ā> Similarly, bisphosphonates can lead to jaw necrosis, and fractures of the pelvic area.
I admit it is curious that there have been no changes over 5 years, but as you donāt have routine 3 monthly scans, Iām not sure how any change could be properly evaluated. Obviously, if they look at your ealiest and latest scan, they would be able to see no change, but that would not provide the full picture. The thing is, it could be that over the years there have been fluctuations - and those fluctuations would confirm if the areas were benign or malignant.
Hi Lemongrove, all this is quite relevant to me! (except aromatase inhibitors which stopped working for me).
Iām aware of most of the known problems with bisphosphonates. Do you have a reference for the risk/incidence of pelvic fractures?
Oh, donāt worry Iāve had plenty of CT scans! At the moment I am choosing not to due to stability but I can have one whenever I request it, which works for me. I donāt think everyone has a routine 3 monthly CT scan, maybe during chemo but not necessarily once onto herceptin or hormone therapy. As each of my reports has referred to the previous scan no change has been reported, but that could be down to a general observation rather than a more detailed one, if nothing major has been noticed. Iāve probably had at least 7 CT scans since diagnosis so I think there is enough information available. However it is all down to how it is reported and any significance placed on minor observations which is what I need to explore. As I said I still think I have had the right diagnosis but, like Saffronseed, a second opinion and a more thorough examination of past scan details can only help, even if in my case it shows my mets arenāt as stable as I think.
I agree about unnecessary medication and the side effects that all medicines cause, some more life threatening than others.However Iād much rather it were this way around than the other way with a missed diagnosis, now that doesnāt bear thinking about.
Nicky
Hi,
Anyone heard about using RFA (radio frequency ablation) for bone mets? Was casually googling bone mets last night and read a bit about it. I know it is used in cases of liver mets. Have appt with onc or registrar tomorrow to discuss back pain and recent spread and what to do.
Thanks for any info.
PS No gormless shopping by me, Nicky, so unable to resurrect thread!!!
Liz x
Hi all, it seems to be policy at my hospital to only do scans when there is evidence of change, such as pain. When I had radiotherapy to my spine I asked when I would next have a bone scan and was told that it was difficult to tell what was exactly going on from bone scans and there was no plan for another one (I had only ever had one, to suss out why my hip was giving me jip in the first place). Then when I had new pain I had both a bone scan and a CT scan to investigate. This was when further spread was found. The routine seems to be bone scan followed by CT scans if necessary to show clearly what is going on. I have also had a CT scan to check out liver and lungs, and a recent one to check out the head. I had one MRI scan early on my hip and spine to diagnose exactly what was going on there. The oncologist used this to diagnose very small mets in my spine describing it as a searchlight which highlights everything.
Thank you to all who responded with info about morphine etc. Val, I edited my post for a couple of typos. Sorry for the confusion. I will check this one thoroughly before submitting!
I have persevered with the zomorph and apart from my bowels going on strike seem to be escaping the worst SEs this time. Weird dreams are a mixed blessing (eg dreaming in utter panic that it was Christmas Eve and I was in town trying to do all my shopping). My hospice nurse wants to see if this gets my nerve pain under control before trying any of the other nerve pain solutions. I am wondering how much the morphine is working as I needed the top dose of paracetamol alongside over the last two days. But not today. I think maybe the effect builds up. Have others found that?
Best wishes to all.
My previous onc assured me when I was complaining of pain in my hip and leg that a scan was not necessary,despite not having been scanned for a year.He did a physical examination and pronounced my condition as stable,I was tempted to ask if he had x-ray eyes but instead just changed hospital and therefore onc- I believe the lack of scanning is because of financial restrictions at some hospitals.Since going to RM I have been having 3 monthly scans but then had a six month gap because I had had mri,ct and bone all showing mets as stable.Will be having a ct in December prior to my 3 monthly checkup as pain has become worse and may need rads.
Personally I need the reassurance of scans to know what is happening,good or bad.I try to imagine the tumours shrinking and being told one day āthey have all goneā, but in the meantime I will settle for stable.
Good luck to all waiting for results.
L xx
Hello all ! 
My first-time post on Monday 5th I accidentally deleted. My 2nd post on Tuesday is still here! (post number 4029).
I would appreciate discussion and opinions on my present situation. I was diagnosed with BC in Oct.'09 and told at the same time it had already spread to my bones (from 1st CT scan). I did not have a mastectomy then - 6 FEC chemotherapy given and Iāve been on Femara & Zometa since.
I did have some weakness in my left hip area- a bone scan in March 2011 showed only one black circle at the top of the femur. I had 1 shot of radiotherapy. Stiffness in sacrum led to 1 shot radiotherapy to sacrum in April this year & 1 shot to previous area.
Now - due to re-growth of breast tumour - Iāve been advised to have a mastectomy with removal of axillary nodes, plus 3 weeks radiotherapy. Iāve been told that the āspottyā areas seen on scans is āless likely to be cancer relatedā and they will investigate for rheumatoid arthritis/whatever, after the mastectomy.
I spoke to a Macmillan nurse via 'phone yesterday, who said that she hadnāt heard of this happening before and sheās been in breast care nursing for 20 years. Comments please!