Hi, just to fill you in with my story. I had hip pain which the gp thought was groin/ligament strain and gave me pain killersThis went on for about 4 months this time last year, some weeks worse than others. I returned to gp who gave me different pain killers…I asked for a scan…was told no! These pain killers fortunately didnt work. I then went to A&E as I was in intense pain…they xrayed me and saw a ‘greying’ in my hip area. I was admitted and had further tests etc which they also discovered a lump in my left breast.
So was referred to the Marsden who confirmed I had bc and sx bone mets. I have had radiotherapy on my hip and the pain has gone and I can walk again without crutches.
After my experience I would definately recommend you push for scans if you have any unusual aches and pains. My pain would have been much less had I been scanned earlier.
Take care,
Mel xx
Hi there. My sympathy goes out to all of you on this forum. I felt less alone to read your threads and had to start posting myself. Isn’t it bad enough having to go through diagnosis and treatmentI in the first place without all this ongoing stuff? My problem is that I am suffering deep leg aches, worse at night. Started off about 5 months ago as an occasional ache in one thigh but now I have it badly all day + night. The aches are in both legs, all the way down, and it is driving me mad not to know the cause of them. I have two years since diagnosis (which consultant says has improved my 10 yr survival prognosis from 50/50 - I had 11 involved lymph nodes and a large primary tumour - to around 75%- yay) and around a year since finishing radiotherapy. I went to the GP to begin with and they ordered blood tests and x-rays to check for mets, which both came back clear. Then went back to the breast consultant who did a bone scan which he also said was clear (except for something on one of my ribs that has been there from the beginning and has never changed - therefore no worries). He told me the leg aches are definitely not mets. However i have read that only one type of met shows up on bone scans and that the other type is only visible via a CT or PET scan. Has anyone else heard this? I went back to the GP and said this but both her and the consultant were absolutely adamant that if there was a problem it would show up on the bone scan. Now I am being referred to a rheumatologist to check for arthritis. My thoughts are - how can I have arthritis? I am a very fit, slim and active 51 yr old. I never had any health probs in my life before bc. I would really like to hear your thoughts - do you think I ought to put down the worries about mets completely as the GP and consultant said I should? Do you think it sounds like arthritis or could it be something to do with the after effects of chemo or the tamoxifen? Has anyone ele had this experience? If so i would love to hear from you, either PM or on this forum.
Hi… Just thought I would share my experiences with scans of all types. On initial diagnosis I was given an MRI scan which showed cancer in my R breast but said that my L breast was clear. I then went on to have R Mx with expander and also reduction in my L breat. When the histology came back they told me that I also had C in my L breast despite the MRI showing it clear. Also skin cancer around R breast. They then ordered a CT scan which showed bone mets in my upper spine and shadows around my peritoneal area. I was part on LETROZOLE and the Onc ordered a Full Body bone scan which showed some lesions in my skull. He then said and I quote. “Interestingly the bone scan did not show up the mets in your spine”. - I thought this was good news until he went on to say. “So there could be other areas that hasn’t been picked up.as well”
So it would seem that all types of scans are not 100%. Like some of you I am not in much pain, just hoping the LETROZOLE is working Been 6 months now so am having another scan soon.
Hi Lynneq,Thanks for sharing your experiences. I guess in an ideal world we would have all these checks and scans at least once a year, but it seems they are not on offer, and it seems there is no difference between options for those at higher risk and others. I really thought the MRI was foolproof but it obviously isn’t, so surely the only way of diagnosing and monitoring is to have at least 2 different types of scan?You have been through a lot and I hope the Letrozole is working for you too. Soak up the pleasures of life that come your way every day, and always assume the best. Hugs, Jane.
Jube, I had to smile at your comment “hopefully it’s just arthritis”. I realise that arthritis is infinitely better than having bone mets, but as a rheumatoid arthritis sufferer of over 20 years I wouldn’t call it ‘just arthritis’. I’m not in a wheelchair yet, but the pain is unbearable most of the time, even when I’m having Methotrexate injections with my Leflunomide. I had to stop the methotrexate whilst having chemo and thankfully I felt quite well jointwise whilst on chemo. Had my last one on 23 May and I can feel the effects of RA coming back and haven’t resumed using metho yet. If I ever get bone mets, I wouldn’t know the difference.
PG
Hi again…just an update on my previous Post. I did not post before because was waiting for my CT scan results after six months on Letrozole. Good news…no further spread in bones, the mets have either stayed the same or got smaller…
the peritoneal area is “almost completely resolved”. my first encouraging scan…thanks for the encouragement Jane…it all helps!!
Hi everyone, I have just picked up this thread, have only posted once before when I was first diagnosed in march 13. I had early breast cancer no node involvement ER- PR- HER+ and had lumpectomy, rads, chemo and herceptin but had to stop herceptin as I came out in a rash!! A few weeks ago I started having pain in my hip and thought it was just sciatica . Prior to BC I had a broken heel and surgery the result of fall so I thought my hip pain was probably due to me compensating for the weak foot and being lopsided!! Had the annual mamogram a couple of months ago and all was clear! Casually mentioned to the oncologist last week about the pain and he has organised a bone scan. Now I am really worried!!! The pain is worst in the morning and is a shooting pain and pins and needles down one leg!! Anyone had something similar??
PS your posts are really helpful, its good not to feel alone.
Moira x
Hi everyone, I have just picked up this thread, have only posted once before when I was first diagnosed in march 11. I had early breast cancer no node involvement ER- PR- HER+ and had lumpectomy, rads, chemo and herceptin but had to stop herceptin as I came out in a rash!! A few weeks ago I started having pain in my hip and thought it was just sciatica . Prior to BC I had a broken heel and surgery the result of fall so I thought my hip pain was probably due to me compensating for the weak foot and being lopsided!! Had the annual mamogram a couple of months ago and all was clear! Casually mentioned to the oncologist last week about the pain and he has organised a bone scan. Now I am really worried!!! The pain is worst in the morning and is a shooting pain and pins and needles down one leg!! Anyone had something similar??
PS your posts are really helpful, its good not to feel alone.
Moira x
Hi Moira I do have exstensive bone mets and to be honest I have problems working out which is pain from the bone mets,which is pain from general deteriration and which is arthritis. I did have pains down my leg for almost 2 years, which was sciatica, and almost overnight it went away…to be replaced by pain in the groin! I have just had a blast of rads to my pelvis to try to determine if the pain was from the mets which were present, it has improved a little but proves it is mainly arthritic pain, so now need to reassess my meds.
I am sure the bone scan your onc has ordered is just precauthionary, and pain always seems to be worse in the morning…takes me some while to get moving. I know any new pains send us into a panic but it is better to get it checked out.Good luck.
Lxx
Hi,
Sorry to hijack this thread- I have not posted on this site in 6 years and am getting myself into a right state!! I am not a hypachondriac and am in total denial that I ever really had cancer (BRCA1, double mastectomy,ovary removal, triple negative grade 3 aged 34 2007 ) … been getting on with life ever since.For the past 5/6 weeks have had funny dull pain/ache? at end of left collarbone - towards the end of my shoulder. Its very hard to explain as its not pain- just an ache (as if I’ve slept on it funny)… I havent mentioned it to anyone as its not that painful- just achy niggly, but now its freaking me out as its continuous and its getting me down… I’ve convinced myself (and I’m really not a drama queen) thats its come back in my bones…I feel I cant share it with partner/ family friends as I dont want to worry them and rake it all up again, but I’m sitting here crying as I’m so scared… anyone else had anything like this??? Thanks xx
Lily0,
So sorry you are having this worry, but you know that the only answer is to have it checked out don’t you. Nobody here can tell you if it is or is not what you fear.
If it is indeed bone mets it can be treated. There are ladies on here who have had many years of healthy life while having this condition. If you don’t get it checked out, you are only going to continue to worry and stress about it. Surely it is better to know, then you can deal with it?
My heart goes out to you. I had a triple negative primary as well, and recurrence is what we all fear. Take courage and go see somebody. It may turn out to be nothing serious after all. xxx
Hi Lilyo I can only second what Morwena is saying I have just been told I have Bone Mets and luckily are not suffering with any pain currently, but it is so important to get this all checked out, it may well be nothing but of course the more you worry about it the more you feel it! Hope you get things sorted soon to put your mind at rest. take Care Meg xx
Has anyone had a shadow on an x Ray rhat turned out to not be bone mets. GP rang today to day I need further scan to rule out bonemets. I had primary ex in 2007 and have been well. No sumltoms but tingling I left leg. Tiny shadows are in right leg but no pain. So hoping it isn’t bone mets. Any experiences gratefully received as really scared here x