I was going to post this on secondaries but i dont want to think i will have to post on there.
I have had such a ‘down’ day today. I have had aches and pains in the last 2 yrs since DX and had various tests scans etc thankfuly they have been clear.
However i started with this back pain in July and its not gone. I can hardly sit down.
I have an appt with a orthopaedic consultant on Wed as my xrays were ok and bloods ok.
My oncologist has ordered a MRI scan but it is so slow waiting for the scan and results.
What i need to know is what the pain is like with bone mets.
I have 2 bone mets. One is in the cervical area of my spine and one in the thoracic region. I also have “involvement” in my lumbar region and hips. I have had radiation to all areas.
At the time that I think the cervical and thoracic tumours developed I had the most excruciating pain at night and had to call out the night doctor several times. During the day it was like neuralgic pain.
With the lumbar region it was a persistent irritating ache which made me change my position all the time.
Even now, I find I suffer sharp pain if I twist my spine at all.
If I have a virus or any other upset it aggravates the tumours and they feel swollen and ache.
Hiya Liverbird
I too have had back pain and bloods are o.k. Mine started a week after my rads. I’ve been very worried. My G.P. says that bone pain usually is constant and worse at night. this is different to my pain. I’m free of it at night and it starts about mid morning ,geting worse in the afternoon. Rest helps.
Is this similar to you? Hope this helps
Love Julie XX
Hi Julie
My pain is like Ruftikins in the lumbar region a persistent irritating ache but awful if i have to sit on a hard surface for any amount of time. the pain in my right shoulder blade is like a hot knife but not there all the time thankfully.
the thing i am holding onto just now is i sleep ok and i think if it was serious it would keep me awake.
I’ve got a met on one rib, and before I had treatment the pain was like toothache. If I pressed it, it made me feel sick. Thankfully now I’m getting treatment the pain has all but disappeared. I’ve got another met on my lumbar spine which hurts a bit if I poke it, so I don’t poke it! Otherwise it doesn’t bother me.
The other bone pain I get is in my hips which I had long before the bc. It’s a bit worse now, probably because of the tamoxifen which can cause stiff joints. I’m sure it’s not met pain because numerous scans show my pelvis is clear. This sort of pain is different to met pain - it gets worse if I sit still for ages, then eases up when I move around. The met pain was the other way round - it got worse if I did too much.
There are all sorts of reasons why you might have back pain, I hope it’s something that can easily be treated. Good luck with the scan and I hope all goes well.
My pains vary.
I was dx with bone mets to hip and pelvic regions with a spot on my lung.
Lung - this area felt sore if prodded, as has been said. But, initially, it was as if I had a pulled muscle behind my rib - I couldnt move at times, it felt like it had gone in to spasm. If I stayed still, then it would ease and I could move again after a few minutes.
Hip/Pelvic region - Initially, this was like sciatica - shooting from my buttock to my heel. I have also felt like my hip bone needed to click back in to place. I have had rads in this area now.
I am pretty certain that I have pretty vast spread now - a lot of the time, my bones are achey - as if you have been out in the cold/damp weather - heat does help. Other times, I have an ‘angry’ achey pain.
The only painkiller I take is paracetamol - as this seems to take the edge off when I need it.
I think it may depend on where your pain is in your spine. I can’t really describe how mine was now except that I found it really difficult to walk at any other pace than a snail’s! I also had difficulty in twisting round if I was in the car and wanted to reverse (still have a bit of problem with that). Plus couldn’t get out of bed or chair without really thinking how I was going to do it! I also couldn’t turn over in bed in one complete movement (bit like a 3 point turn but about 12!!!)
I ended up having a fracture in my spine but my bone mets are in every vertabrae of my spine but with the bisphosphonates they are so much stronger now. This was 3 years ago now. Like Anne, I don’t take any painkillers except paracetamol and that’s normally when I know I’m going to be out and about for longer than a couple of hours.
I hope you get to know your scan results soon and hope that you don’t have to join us on the secondaries either.
Not been on here for a while and feel I have abandoned you at this time of need. I am so sorry you are still in pain. The waiting for appointments and results is awful I know. I HOPE everything is ok, but just wanted to mention my shoulder pain.
A few months ago i was in continuous pain from my shoulder and i found a lump on that side and none on the other. i freaked a bit and posted on here several times about it.
I finally got some tests, xray and bone scan, and nothing was found. So after some nagging, I was refered to a physio. This worked within a wk! I was so convinced I had bone mets, and yet withinn 3 days on exercises from the physio, the pain had almost gone.
I am trying to be positive here. It is still possible that you need some sort of treatment. Physio, massage, exercises, etc and that might just do the trick.
I know that nothing I say will put your mind completely at rest, and I hope your orthopaedic app comes quickly. But try to remember, not all pain is mets. It’s hard I know coz I’ve been there. Planning my funeral, sleepless nights and crying all the time. I’ve come through it, and I pray you do too.
I know exactly how you feel! About a year after dx (2003) I woke up one morning and could not literally walk for the pain in my back - had to crawl on all fours to get to the loo. I couldn’t stand straight. We had friends staying with us and had arranged to go out for the day. I was in absolute agony. I went to see my GP late that afternoon as I didn’t know anything about bone mets then and he sent me off, at 10 pm at night, to a local community hospital for an x-ray. The hospital was chained up… took us ages to get them to open the gates. Does make you despair at times. The tech there said he would send the x-ray to the major hospital where I was being treated for bc and Crohn’s, said he couldn’t tell me what was wrong, but whispered: “You have a serious problem with some of your vertebrae which are crumbling”. I nearly freaked out. Just as well I knew nothing then about bone mets.
Went back to GP who sent me off to a local NHS centre for physio when I told him I had bad hip pain on the left side - absolute waste of time for them and me - I went weekly for 3 months. I never did hear from Derriford Hospital about my crumbling spine! It was only at my next annual review with my bc surgeon when he asked me if I was okay, I told him about the back and hip pain. Two days later, I had a bone scan. Result? - arthritis in both hips, feet and hands. So much for GP’s. However, I am grateful that it was not bone mets.
Earlier this year my gastro, who treats my Crohn’s, sent me for a DEXA bone density scan, which is different from a normal bone scan, and my bones have thinned significantly since the last one 3 yrs ago. He put me on a bisphosphonate, Alendronic Acid, one tablet weekly, and twice daily Calcihew/Vit D tables. The pain has virtually gone - just wakes me up sometimes during the night.
Guess the moral of my tale is that not all bone pain is due to mets. I am thankful mine was “just” arthritis and has been addressed. My gastro said my bone problems are not due to bc, but the 30 yrs of taking steroids for Crohn’s. I can happily live with that.
Thank you for all your encouraging helpful posts. I suppose i just have to wait for the MRI scan which is Friday and results the week after. Just hoping this pain in my shoulder blade goes too.
Very Very low this week, i feel i am absolutely hopeless the way i have coped with BC this last 2 years and everyone else is wonderful.
I just dont talk to anyone about my fears and feelings as i think they are ‘fed up’ with me. OH is useless, so wrapped up with work. he just takes a ‘everything will be fine’ attitude and i feel minimises my concerns.
This BC site is the only place i can truly off load and share my fears so thank you.
Rx
I had never heard of bone mets until I had my regular appointment with onc in Oct, she asked me if I had any aches or pains and when I told her pain in my lower back - which I thought was a kidney infection - she sent staight for x-rays and ordered up an emergency MRI. The x-rays were clear and got my MRI appointment thru. I duly went for MRI and let me tell you I did not like the MRI one wee bit. I was mortified as when I came out the tears were rolling down my face and when I stood up I passed out. Swore I would never do one of tjhose again.
I phoned my Onc secretary to see if results and she quited blitethly told me that they had found hotspots on both my hips, one is bigger than the other and that I was to have another MRI in Jan to see how fast they’re growing. Now to say I was shocked is an understatement, I expected to be told all clear. My GP went nuts when I told him results were given to me over the phone by a secretary. So now I’m back to playin the waiting game and so fed up with my friends and family ‘not able to cope’ or 'this waiting is going to give me a nervous breakdown - how do they think I’m feeling.
Sorry ladies, I didn’t mean to rant and rave but am just so fed up.
Oh Angie
That’s terrible you being told like that. That’s outrageous. Definitely worth complaining to your Onc.
When will you hear your results ‘properly’? Or do you mean you won’t see anybody about it until January? That sounds awful if you have to wait. I am so sorry.
What was it about the MRI you didn’t like? (I’m getting confused now, i’ve had so many scans!) Is that the one where you go through the polo mint and it’s really loud and you have to keep holding your breath? I remember I cried during that one - mainly cos I just couldn’t believe I was in one of those things - it seemed so unreal.
I’m sorry your f & f aren’t being fully supportive of you. You just come on here and rant away whenever you feel the need!
Big hug
Jacquie
yes have to wait until January and my family are giving me a hard time about the waiting time, but nothing I can do about it - they’re moaning about how they wanted to really celebrate this Christmas with no worries, which was supposed to be at my house this year. So told them to take a hike and canx the party.
The MRI is the round cylinder you go in and I was in it for 40mins - not looking forward to the next one but they said they would give me a sedative.
Feeling more positive today and have arranged to take my daughter out for a slap up meal at the weekend.
Have just read your post and although I obviously don’t know your family, I can’t believe how insensitive they are - don’t they know that you don’t want to be in this situation. Don’t blame you for telling them to take a hike - talk about priorities!
I’ve had an MRI scan once and it was so noisy and don’t blame you for having a sedative. I’ve got my next CT scan in January which isn’t as bad as the MRI machine - just don’t like the fluid they inject at high speed while you’re lying there and then, within a matter of moments, you feel as though you’ve wet yourself or your waters have just broken (when pregnant)! Weird!!!
Hope your family realise that you are far more important than a Christmas meal.
Hiya Liverbird
Just wondering how you are after your MRI!
I have to have an MRI too, waiting for the date!
I’m so worried, I was up in the night with pain in my spine. This waiting is awful isn’t it.
thinking of you JulieXXX
Hi Julie
Had MRI at 4 today.
Your quite right Pinkdove its so noisy but tests scans etc never phase me its the dreaded results that do that… They are next Friday.
I kept my eyes closed as i would have felt panicky being so enclosed, and just thought nice thoughts but for the noise i could have gone to sleep. I was pleased at first it was warm as i had been sitting waiting in the silly gown ffreezing but by the time i came out i looked like an overcooked turkey.
I agree 100% with you - it’s the waiting that’s the worst really. My oncologist is brill though as she knows I get anxious and usually lets me know the following day which is so good of her and I know we’re lucky here to have someone who is aware of how anxious it is waiting.
I also keep my eyes closed in the MRI scanner! They let us take a CD in and play that. I think I had a bit of street cred the last time as I borrowed one of my son’s CD’s and the young lad was seriously impressed with the music that was playing!!