Girls. i have an achey hip! I don't need painkillers for it and it doesn't wake me up in the night. but it has been here a good few weeks. i THINK I might have had this before dx but I have a not so good feeling about it. Anyone else start with an achy hip where the discomfort seems to move around a bit? I find it hard to describe exactly where the pain is...
Broomsticklady, that's fantastic encouraging news. I think we msut have started Cap at exactly the same time (as I finished cycle 3 yesterday). Am seeing the Prof on Monday, and he will no doubt arrange a scan - so keeping my fingers crossed.
That's so fantastic Nina, I'm really pleased you are mrs stable Mabel.....great news
For Clare and all those struggling with work,agree with Kay, you need occupational health depT, Or someone in HR to sitdown with you and sort out something that will work for you. I'm sure BCC have a leaflet on work issues. We are protected by the disability act and our employers have to support us if we chose to carry on working etc. I was so lucky to work for nhs because they are set up to support staff. Small companies etc might not be au fait with your rights etc. I hope you will all get your work issues sorted. It's so hard to know what to do for the best!
If money is an issue, are you aware that you may be eligible for ESA and DLA. I'm no expert but macmillan have special support workers who will help you to apply for benefits. You might be surprised. I manage fine on benefits so I can rest when I need etc....i hope this helps. I don't know as much as some of the other ladies, being under a year from secondary dx, but want to help.
Hope all of you can have a great Sunday, whatever you are doing! Xxx
Lots of love
Oh ladies returning to work - please don't be too hard on yourselves, you've been thru a lot to get this far and you still are - remember - you may look as before but you're sure not inside - you're nurturing 'aliens' in you who are making just teh day to day living hard. I was made redundant - reluctantly - 3 months before my sec dx, and now realise that its the best thing for me. I didn't at the time - I felt - still do a bit - that I had something to offer still, but now know I appreacite my no need to get up some days, the lack of routine forced upon me, and the need to keep a smiley face and not bite my tongue. I've just said bye to a couple of old freinds who came across for lunch, and had to contend with the 'we've all got to go sometime' remark - meant well but they just don't get it.
But good news from me - after 3 cycles of Capecitabine I'm a Stable Mabel!! Bone scan on Tuesday was same as August's - you all know how much that means!!
Hugs and kisses to all - we're going thru tough times but we're strong women - all of us even thiose who don't feel it - we'd not be hanging and kicking as we are if we weren't.
do you have a company Doctor who will speak to HR for you as this would be your best bet sounds like your boss wants kicking into touch i would have nasty thoughts towards her/him now adays thats how i have gone now i walk away and say i do not do stress so speak to me when you can calmly or not at all
At the time i was re diagnosed i asked about the cyberknife and was told no but i have had radotherapy which was july 2010 at the moment i am just monitoring my self as the pain is worse but i have my first grandchild so it may be the lifting of her i have it in my shoulders as well but my tumour as pushed my ribcage over so besides that i have one shoulder lower than the other now so it could be anything with being out of line i do not think they will operate as i also have chestwall involvment as well it will be mentioned when i go in dec to see onc
take care and remember No 1
Kay, you sound like you really are having a tough time at the moment. Can they do anything to reduce/remove the tumour on T4? I know a lot of ladies have undergone cyberknife treatment which seems very good.
I loved reading your posts. Work was ok today but, and I thought of your advice about putting number one first, I may have failed when I saw my HR officer today. I told her I didn't want to increase my hours next week but perhaps the following one. She said well, the company are paying you full time now and they would like you to work full time as soon as possible. This stunned me a bit, I didn't expect to be paid in full and I didn't expect to have to make decisions about the hours I work yet. I agreed to some extra hours next week and the week after but weather I'll be able to do them is another thing. At least my colleague, who had gone quiet, emailed today and cheered me up.
A nice hot bath is in order now I think.
Love Claire xx
Oh girls my heart goes out to you all. It is so true that people seem disappointed that you don't look like a grey ill person, they don't realise how much pain and fatigue is being endured. I agree, put yourself first. I took early retirement as a nurse and I don't regret it. Icouldn't physically have done the job, but mentally, I can't imagine coping. I use my energy on the necessary things for me, like being a mother and a wife, and sod the rest of them! Strength and power to you all xx
Also...hope val is ok ...love to val....hi to everyone...all us bone ladies kicking ass!
you are so right
i get so fed up of people telling me how brave i am, as you said we have no choice...well we do but I'm not choosing that one till i have too!
I'm working 4 hours a day 5 days a week, i don't do full weeks that often though with my hospital appointments & scans, some mornings i really have a struggle getting myself out of bed to go to work,and i think to myself just stay in bed, but it helps me feel normal going to work and I'm normally OK with help from my pain killers....however this week i have not had any appointments so i will have worked 5 days and my body knows it too, I'm very tired.
i have been going through all this for 7 years and Ive coped well, up till now..I've been feeling very low and bursting into tears for no reason...i gave in and i see a councillor at the mcmillan centre, she has told me to stop putting others 1st and think of myself for a change...its hard to do but i am trying to do that.
i agree with kate people do not understand they see you looking well and getting on with life telling you you are brave well i am not brave i do not have a choice but i will be damned if i am letting it take over my life i am in pain with the large tumour on T4 every day but i space my self and you should try and do this
i have to rest even after putting my makeup on though i only do this now when going on a night out
if i prepare my veg i do this in morning so i can do the meal at night
ironing is even worse as i rest then couple of hours later put it away
could go on but will not bore you
i was fortunate as a nurse in a colorectal clinic i found it difficult to go back to work i job i loved and still miss but i put myself first for a change
just look after number 1
Claire - I know I don't know you but just wanted to give you a BIG hug. You have to look after yourself. I have mixed views myself now about returning to work. I am looking forward to normality on the one hand but terrified it's too soon but financially I have to return. I have been popping in and was knackered after 2 hours helping out, plus my blooming hips were in agony. I'd forgotten how much crouching down to children's level you do in a day! Like you - I get the impression everyone is fed up with my illness and as I look well (albeit with v short hair) people assume it's all over with. They don't understand the secondary thing at all.
Nicky's right - you have to put yourself first and do things at your own pace. Get the work/life balance right.
We are all 'battlers' and we will all get there in our own way. Don't let anyone get you down! Tell em to 'bog off' or words to that effect!!!!!!
Anyway just wanted to say I'll be thinking of you. Good luck - let us know how you get on. Just remember we are all fabulous, strong women who are giving this cr@p disease a good kicking - anyone else who doesn't recognise that is a ....!!!!! You get the drift!
Thank you everyone for your support.
I didn't work today and sleep quite a bit and feel much better and more positive. I only work tomorrow morning and have arranged to see a friend after so hopefully I'll be ok. It's true though, most people can't comprehend the condition of secondaries and I really don't feel like explaining most of the time.
Hope everyone has had a good day.
Sorry to hear you're feeling low. I went back to work for one day at start of October and then went on annual leave for 2 weeks. Just arrived and went into complete emotional meltdown and had to come back home early. Managed another half day at work and had to go off sick again. I've decided to retire at the end of next month but I know that not everyone can do that.
Don't beat yourself up! You've been through a difficult time and unless people are living with secondaries, they haven't a clue what like it is.
Sending you virtual hugs. Take care of yourself before you worry about your workmates.
Aww Claire, I'm sending you a big hug as you need it right now.
I think any of us with secondaries come across this 'you're OK now' but of course we never will be 😞 its a big hurdle to go back to work and maybe you needed time to adjust without being exhausted. Your company should help, as you do have rights under the Disabilty Discrimination Act. It really is a cr@p disease and however well we seem to be doing it always comes back and bites us in the bum. Take some time out to adjust and get the work/life balance right. Please do not feel you have let anyone down, they really don't know what it's like, sometimes a few choice words are needed 😉
Take care, look after yourself, you are No 1,remember that.
My situation with breast cancer is a bit different from yours, but I thought I would just reply to your post just so you know that someone's on here this evening! A few thoughts: perhaps you need more time away from work; you've had a very traumatic time and you need more time to get better, physically as well as emotionally. You do what you feel you need to for yourself - never mind other people's 'expectations'.
Val, I hope everything is ok with you. Do let us know how you are.
I'm feeling a bit low this evening. I started back to work last week but have had to leave early today because I felt so ill due to a cold. I feel I've let people down and they expect me to be just fine now treatment has finished. Add to that a colleague who I thought the world of and who was very supportive during treatment has blanked me since my return to work. I get the feeling everyone is bored of my illness now, even my partner keeps saying "you'll be alright". I've got secondaries, just had a summer of chemo, bold, one breast and a scar up to my belly button from a hysterectory and no I don't feel fine, emotionally anyway. Sorry for the rant but feel only you ladies know how I feel at the moment.
Love Claire xx
Thank you Lemongrove for your reply. With regard to my chest node I did ask about this being done but was informed that it has stayed the same size since things began so there is a possibility that it might not be cancerous. There is also the question mark as to why only this one liver met has grown when all the others have virtually disappeared in response to treatment.
The biopsy will not be done until early December as I am holiday from 19 Nov but the onc was not pushing for it to be done before my holiday, which is comforting, so I will try and not to think about it until after that (easier said than done!)
Gosh, I haven't managed to get on here for 4 days and I come back and there are loads of posts! I really need to get this working better on my phone.
I have been sufferring this week. I think (hope?) the radiotherapy has been working. Since Monday night (so after 3 rads) I have been in so much pain. Just getting out of bed was a real struggle (and involved Phil pulling me out). I called the MacMillan nurse and got to see her when I went on for my Rads. The lovely lady (and a dr or 2) agreed to a prescription for OraMorph and when we reviewd on Wednesday I was told to double my dosage of the slpw-release too. This seems to be having a good effect (or the mets have stoppe fighting the rads) and I can now get out of bed by myself.
I do suddenly have very achy legs too, but as it is both thighs and both knees, I suspect it is either down to moving oddly to favour my back or a se from the hormone implant (Zoladex?).
So, I have been off work all week, having a morphine induced nap in the afternoons and generally just passing time (and not lifting heavy items including the laptop). It is all starting to get better and I only have 3 more rads doses to go.
Today, I had a ct scan and get the results on Wednesday. It is to confirmt that they are indeed mets, but the way my bodt has reacted to the rads means there is little doubt in my mind.
Sorry, morpihne-brain means i can't even attempt to respond to the posts over the last few days, but Val, I hope your silence is becuasee you are out celebrating good news.
Nannyspike the secondary biopsy was done on a chest node, and was carried out at Charing Cross Hospital. It was ultrasound guided, and didn't involve sedation - it was just done under local anaesthetic, No pain at all, just a sense of pushing (as they inserted the guide). I think you are wise to have it done, because I have spoken to two of the Profs there now, and they have both said it is incredibly common for receptors to change. Just one thought though, as you are a little nervous, would it be possible for them to biopsy the chest node rather than the liver met? Really you want to go for the most recent met, if you can.
Dear All - Thanks for comments on my present situation - much appreciated as when I go for pre-op mx appointment I can add a few more Qs to my list of 'things I need answers to'!
Since diag. of BC + bone mets (Oct '09) I have had various tests - CTs, bone scan, MRI.
Oct. 1st: Latest CT scan, due to re-growth in breast, which I mentioned to onc. around 5 mths. ago. He couldn't detect anything until September, via physical examination.
Oct.15th: I asked onc. why mx's are not done if there are bone mets, and if there is re-growth of original tumour. He said he could refer me back to surgeon re. this, but they'd probably look at change of hormone therapy/radiotherapy to breast. He said they would be reviewing my case at an MDT meeting, Oct. 21st.
Oct. 25th: Saw onc. again, expecting a change to Exemestane + rads. He said they re-looked at all my tests and feel it's less likely bone mets because it has not behaved in the way they would have expected. Definitive treatment now mx + rads.
Oct. 31st: Surgeon will do mx on 29th Nov. I asked surgeon re. bone mets activity - he said that, like a xmas tree, they would expect to see spread, lots more growth and bigger metastases, but there seems no change in me. I'm waiting for appt. with rheumatologist after mx.
Sorry if I may be repeating myself, but I feel very muddled about it all at the moment.
I don't really understand why they changed their minds quickly on whether or not hormone therapy/rads or mx was best for me.... and why my onc. didn't send me for another scan months ago when I felt recurrence. Yes Lemongrove, I need to know about any plans re. treatment/not for bones after mx.
My last ct scan has shown that my bone mets are stable, which is good news, but I have a small chest node and one liver met which has grown to 2cm whilst all the other mets have virtually disappeared.
Lemongrove - Do you mind me asking you where you had your biopsy for secondaries? I am having a liver biopsy soon to see if my receptors have changed then will have RFA to get rid of the little blighter. Bit nervous about having this done as sedation doesn't work very well for me. Cons feels that this is the only way to make sure that I receive the right treatment. Currently on herceptin,pamidronate and exemestane but something isn't working due to this progression.
Also, thanks to ladies for welcoming me to live chat on Tuesday - enjoyed it but will have to type quicker next time!
Hi jenanne - and there was me thinking I'd gone mad as I tried to re-find your early post (the one you deleted)! I was sure I had read someone else (other than Saffronseed) being told her mets weren't mets after all.
As to treatment with a mastectomy this is being offered now to secondary patients who are stable, I know not all of us have had this but many have. It didnt used to be offered as a matter of course as it seemed that treating the secondaries was of the most importance after a diagnosis. However many ladies, like Sarah (Cromercrab) have now had the operation so I don't think having or not having mets is the deciding factor. As LG says there can still be BC cells in the body, as yet undetectable, if a mastectomy hasn't been done.
As to whether you have bone mets or not I would definitely ask for a second opinion, particularly if the plan was to stop any form of treatment after your mastectomy, although maybe you would be still on hormone therapy? Also, is it possible that the new breast tumour/regrowth has a different receptor status such as HER+ which could be why it has grown but the 'mets' stayed stable? Either way I would ask for someone else to examine your scans, I will certainly do so if my mets turn out not to be mets after all.
Good luck with your scan today, Debs (Supertrouper), and more importantly that the results don't show any sign of spread. Although we are a lovely bunch we really don't want anyone to join us, purely because it means that bad news has come their way.
Good luck also to Nina with your results, hoping that Cap is doing it's job and killing off the little *uggers.
Thumbie - if it helps take some worry away, when I first went on morphine, and subsequently, I've been told that 'simple' paracetamol aids the transit of the morphine into the body, and I was recommended to take the 8 a day whie I was morphining. Those who told me ths were Pian Man (palliative Care doctor), Macmillan nurse and 2 Gps.
So many scans ongoing - particularly thinking of Val who's been dangling a while. I joint the scan club Tuesday with a bone scan (maybe CT after if anything unclear but means more venal access and I try to avoid that if possible) and results on Friday to see if 3 cycles of Cap has done anything and if my tender back is progression or healing. Cap seems to have setled down so well so far I pray it's working - such a long time to wait tho for results post test.
Morning all. Just drifting in. I have ct scan every 3 months. When I was dx with primary and bone mets at same time my oncs plan was to shrink my breast tumour. Had mx a year later. Then 3 weeks of rads plus 3 boosters. My onc is very proactive and inspires trust, which is quite handy lol. Just had my first erubulin today. He doesn't hang about if he thinks things aren't going as well as he would want
Further to how often people have scans. When I was first diagnosed with bone mets I had NM Bone scans every three months. Now I have a suspected lung met, I have a CT with tracer, every three months , with MRI and Pet scans to provide greater detail. As I have recently been put on a different treatment regime (because a biopsy revealed my receptors had changed), I will now have monthly scans until things have stabilised. Also, as I'm now on Herceptin I will have an Echo Cardiogram before every fifth infusion (so they are very pro-active). With regard to the scans, I do worry about the radiation this subjects me to, but I believe it's important to keep track of what the cancer is doing, so that there is no delay in responding to changes.
Jennane, it's very difficult to offer an opinion, other than to say it all sounds very odd, and if it was me I would ask for a second opinion at another hospital. I find it particularly strange that the reason your doctors are now doubting whether you have secondary cancer is because your original primary has regrown. I fail to see why a recurrence should change your secondary diagnosis, because secondary cancer can go virtually anywhere - and in any case, as you never had a mastectomy, it's no wonder the cancer in your breast has regrown (as it would probably have recovered from the chemo you originally had by now).
Could it be that the reason they are now doubting their original diagnosis, is because like Nicky, the cancer originally thought to be in your bones has not progressed? If so I would get them to do more work (more detailed scans, such as MRI and Pet, and perhaps even a biopsy), because it might just be that you have an indolent cancer, and if they stop treatment you could be in trouble.
Worry has driven me over to your thread after experiencing a lot of back ache for the past couple of months. I mentioned it at my last check up and was quite alarmed on how quickly they said I should go for another bone scan. This was just 6 days ago and tomorrow (glance at the clock) - TODAY- I have to go for the scan.
When I went last year after dx I was quite calm - no idea why - perhaps I was just in shock/denial. This time I am quite worried.
My back ache isn't constant - it seems to come on mid afternoon and is a deep ache and includes mx side shoulder and arm.
I know it could be just posture problems - but of course I am worried that it is a progression.
What I just wanted to say tonight is that after reading just part of this thread is that you all sound like a lovely lot of ladies, and if I do have to join you then I am comforted by the thought that I have somewhere to go.
Sounds very weird, jenanne, can I ask if they have done other scans of bones eg CT or MRI? In my experience an orthopaedic oncologist looking at a straightforward x-ray and a bone scan concluded that I probably had a hairline fracture possibly caused by steroid treatment for original BC. He felt it unlikely there were bone mets but ordered a CT scan and MRI scan to check. It was these scans that showed it was bone mets. In my understanding hot spots on the bone scan can be arthritis, degenerative bone disease or cancer.
I hope it turns out not to be mets! Although you will have been through hell and still have the worries of the primary diagnosis! The doctors would certainly have a lot of questions to answer.
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 I've 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 - I've been advised to have a mastectomy with removal of axillary nodes, plus 3 weeks radiotherapy. I've been told that the 'spotty' areas seen on scans is 'less likely to be cancer related' and they will investigate for rheumatoid arthritis/whatever, after the mastectomy.
I spoke to a Macmillan nurse via 'phone yesterday, who said that she hadn't heard of this happening before and she's been in breast care nursing for 20 years. Comments please!
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 "they have all gone", but in the meantime I will settle for stable.
Good luck to all waiting for results.
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.
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!!!
Oh, don't worry I've 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 don't 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. I've 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 aren't 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 I'd much rather it were this way around than the other way with a missed diagnosis, now that doesn't bear thinking about.
Hi Lemongrove, all this is quite relevant to me! (except aromatase inhibitors which stopped working for me).
I'm aware of most of the known problems with bisphosphonates. Do you have a reference for the risk/incidence of pelvic fractures?
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). 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 don't have routine 3 monthly scans, I'm 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 Claire, that's good news to hear that your first couple of days went well. Don't 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? I'm 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, it's always an anxious time, so fingers crossed for you all.
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. I'm 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. Don't 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 don't want to over do it.
Hope everyone is ok today.
Can't 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.
I hope your results on Friday are good. I obviously don't 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 'save' me. I am lucky that my liver, etc. doesn't 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.
Hi all bone mets girls. Have been feeling a bit low as well, so ahven't 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 'snowstorm', 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.
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 Friday...). 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 disease.....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 Katie, I realised once I'd 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 'security' of 3 then 6 monthly scans was sort of taken from me but I certainly don't miss the scanxiety!
LG - if you are referring to my comments about my diagnosis I agree with you about negligence but I don't feel that's 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 I've had. It's only now nearly 5 years down the line and having had no change that I'm 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 everyone's mind to warrant a secondary diagnosis. it's only coming on here and learning other experiences that makes you question things. As I said I'm 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, there's no harm asking!
Enjoy the shopping Liz, enough to start up the gormless thread again?
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 haven't had one for 9 months or so as I've 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!!
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.
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. Don't get me wrong - he's 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. Won't be telling my OH about that one.
What a lot of posts! I'll say Hi to all boney ladies now and hope I don't miss anyone out as I can't 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 hasn't deserted you.
Good luck Claire with going back to work. It is a big leap back into the 'ordinary' world so I hope it goes well and helps with getting your life back to some normality.
Sorry I can't 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 I'm also exploring ths route. From my last onc appointment when I asked the 'silly' question about how they can tell I was told in fact it's 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. I'm 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 I've 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 don't always scan you (can't remember who asked the question). I think it depends on your onc's approach. I have always been told that I would know if there were any changes! I'm 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 that's why I don't have CT scans unless I ask for them?