99% chance its bone mets

hi everyone - hope its ok for me to join, i dont have a confirmed diagnosis yet but have an appointment on friday with oncology to confirm. I had primary bc stage 2 in 2012 and had lumpectomy, chemo, rads and 10 years of tamoxifen.

have been fine since then, recovered well with no issues until about the beginning of december last year when nagging back pain wouldnt resolve itself. back pain and muscle pain is nothing new - ive had it for year, even since before the cancer, but its always resolved itself with the help of my chiropractor. but this time it didnt go away and i kept getting bad muscle spasms and lower back/hip pain. it wasnt that bad until xmas when it went supernova and i again had bad muscle spasms in one area, so bad i could hardly get out of bed. since then its got better and my mobility is better and i am still working full time.

however my chiropractor suggested i had an mri which i did last week. they rang on monday to say i had a compression fracture and low bone density, plus a couple of areas of suspicion that might well be related to my previous cancer.

so ive been fast tracked back to oncology so they can look at it to decide if its mets, but i cant fool myself, i need to be prepared that its mets.

im so gutted - after 10 years i thought i was doing so well and im scared of what treatment i will be given - im terrified of doing chemo again. im the main breadwinner and just started a new job, so wont get sick pay - i need to work. 

i had been doing ok, but had a major meltdown today when i got my appointment for friday through - friday is my daughters 13th birthday. so there is a good chance i;ll be diagnosed on my daughters 13th birthday and have to come home and put on a happy face. 

can anyone offer any support? anyone have similar experience? i really hope they can help with the pain and stiffness and maybe resolve the fracture as well. xxx

  • Hi

    sorry you find yourself here.

    try to think at the moment your mind is racing ahead of yourself and you are of course absolutely thinking the worst. It is understandable and scary but right now you havent been told what it is. i went through this. i imagined every single worse scenario there was. I have a ten year old son so i know how difficult it is to be strong around them. But what helped me to calm down eventutally (i wont pretend it was easy - i hear you) was to tell myself that i hadnt been given the facts yet. They havent told you it is mets. and if it is, you can do this. 

    the waiting is so tough. I'm on my second line of chemo now and the wait for the tests was bloody awful. but once i had a treatment plan things became one step at a time. One foot in front of the other. look ahead. dont look down. Have hope.

    I hope Friday will be better news than you are expecting. Keep us posted and good luck xx

  • thank you so much for responding. i always go into 'expect the worst' mode with things like this (have been a few scares over the years of breast recurrences) .

    i think i felt worse yesterday when my appointment came through and they have obviously rushed my through - from referral to appointment took 4 days, then when i spoke to the nurse she said 'oh yes they spoke about this at MDT yesterday' which made me think 'well then its definitely bad news'.

    my chiro said it could be either osteoporosis or mets - both have almost exactly the same symtpoms - but in my mind i dont understand why osteoporosis would cause me pain elsewhere  - maybe in the area where i have a fracture, but not in other parts of my back. 

    anyway, youre right, my mind has a hundred different thoughts every minute, but i know that once i know where i am i can handle it. i will come back and let you know - its good to know i have someone in my corner! xx

  • you will always have so many in your corner here!

    will they be able to tell from the MRI if its mets? its not bad news until they have given you bad news. again easy for me to say. i dread meeting with the oncologist.

    And i hope your daughter has a good birthday - a proper teenager!


  • i know - i cant believe she's 13 - she was a tiny 3 year old when i was diagnosed with my primary!

    i always thought that they would be able to tell from the MRI if it was mets, but maybe not. all they told me so far was that there was a fracture, loss of bone density and a couple of dense areas that they think might be related to my previous cancer. but these things also happen with osteoporosis. So i am assuming they either want a more experienced radiologist to look at the MRI to see what the issue is, or it needs more tests. 

    i think in my mind i will just walk in there tomorrow and the oncologist will just say, yep its mets. but i am assuming there might be more tests required - im not sure what other people experiences have been. 

    • Hi 
    • I was diagnosed  with breast cancer around 3 months ago and a few week later I was told i has secondary bone cancer it’s all been very overwhelming.
    • today was my last chemotherapy I will now have scans and likely to have radiotherapy on the next 2 mit us and then have the surgery to have both Brest removed 
    •  Have to try and keep it in the day I have had days where I thought I can’t do this but like you I have family I can’t give up and I have heard people live for many years with bone cancer I will now have to have this medication for my bones every 3 weeks for now 
  • I had breast cancer 15years ago , before start of covid I was similar to you - back and hip pain , diagnosis was osteoarthritis, had physio via telephone due to lockdowns then after 6 months of pain I was referred for a hip replacement. The surgeon established that my original X-ray had shown patches which he did not like , turned out to be bone mets ! Big shock , but I have had 6 rounds of chemo with phesgo treatment and bone strengthener . finished chemo last June and continue now with phesgo and bone strengthener injections every 3 weeks.  The treatments available now are amazing , I have no pain and will continue with this treatment as long as working. My vertebrae in spine collapsed due to delay in treatment starting- due to covid etc so I do struggle as my back is bent but I can carry on with most things in life , just can’t walk for long time.

    Please stay positive and remember we are all here for you, and they can do so much more these days with different treatments. I hope your daughter has a lovely birthday and I’ll be thinking of you x

  • well i had my breast care unit appointment today and not much further forward. I have to go for a CT scan next week to confirm everything. I asked the consultant how sure she was it was mets and she gave me that look and said ' we are very sure'. so i guess that tells me everything! she was very nice and was very clear about it being a very treatable, long term condition. but i need a scan and possibly a bone biopsy so they can see whether its still hormone positive,as my first one was. 

    at the moment i am calm - this will probably wear off, but just need to take it one step at a time. next step is to see if its spread anywhere else, so fingers crossed for that. 

    so many questions - i wonder how long its been there? if its progressed enough to affect the bone and cause pain, i would imagine its been there painlessly for a while? questions for another day i suppose xx

  • Bless you - I know it’s hard hearing those words - stay positive until ct scan - my cancer was borderline her positive first time around but this time it is her positive 

    As oncologist said it is treatable and there are a lot of positive stories on this site.

    Take care of yourself, try not to worry too much x

  • Hey 

    Sorry to hear the update but good the consultant said this is treatable longterm. 

    One step at a time for sure. 

    Hope your daughter had a nice birthday. 

    I had a little notebook by my side to note down any questions for the consultant. My brain turned to mush when in front of the oncologist. There is often so much information to take in. Are you able to have someone with you at your appointments? 

    Good luck with your ct scan next week. X

  • Hi Jamesy, my wife was diagnosed in October 2019 with HR+ HER2-. Chemo, Surgery, Radio, Tamoxifen, and through we were all good. 

    Then at a check-up of the breast in June 2021, she struggled to get up on the ultrasound couch, as she'd been having back pain for a few months. The radiologist was quick to pick up on it and sent her for a PET/CT "just in case" - Mets in 4 spinal vertebrae.

    They biopsied one of them and it had mutated to TNBC. Thankfully it has responded well to chemo, and she's currently NED.

    However, she still has back pain, in the lower back and mid back. They did an MRI and found a slipped disk at L4, where one of the mets had eaten away at the spine, but nothing in the mid back.

    She has a pain specialist who said it's either referred pain, or the spine/muscles trying to compensate for the slipped disk, so perhaps that might explain the pain in the rest of your back?