I haven’t got secondary bc but there’s no obvious place to post a question about this. The closest might be ‘coping with fears and worries’ in the ‘living with’ section, but I want to know about actual mets and the idea that is only ‘fear and worry’ is part of the problem.
I want to know what bone mets pain is like. I’m 3 years post dx and have had steadily increasing bone pain. They won’t scan me as I’m just treated as anxious/neurotic. But knowing what bone mets pain feels like would help me decide whether to insist on a scan or accept I’m just neurotic. They say my pain is fibromyalgia, but the fibromyalgia only started after chemo.
So, the pain isn’t constant - sometimes it’s worse than others. Some days it is unbearable. It’s worse at night. And when I walk. I take 60mg codeine 2-3 times a day to manage it. If I don’t take it the pain just takes over. Some bones only hurt when I press them - hips and ribs. Back is always sore - lower spine is agony if pressed. If you have bone mets, is it constant agony, and not just if you press on the bones?
Part of my problem is that there’s pain everywhere. I have sore joints (because of menopause and/or inflammatory arthritis and/or osteoarthritis), feet problems and muscle aches. But I assume it’s possible to have bone mets AND fibromyalgia? ?
Also, my white blood cell count is very low, with low neutrophils and lymphocytes. Does this happen if you have bone mets?
I’m seeing my onc on Thursday for results of a CT scan. I expect that will be fine. But he’s not going to give me a bone scan unless I convince him. My worry is that if my bones are sore now and I can’t get a scan, how much sorer do i have to be too get a scan? I have trouble talking properly to my onc and feel like I never get to describe and explain the pain properly. It’s wearing me down.
Sorry if it’s wrong of me to ask your experiences - let me know if it’s inappropriate.
No problems at all about coming over here, to the dark side (!) to ask your questions and voice your fears. It’s totally understandable when you have had primary BC and to be honest your oncologist should be taking your fears seriously. However, it sounds like he/she is as you have already had a CT scan. My bone mets were picked up on a CT scan so if you do, unfortunately, have them I can’t believe they will not be seen on this diagnostic test. If bone mets are suspected you then would most likely have a bone scan as this does pick up all the detail and can give a clearer picture. I have only had one bone scan in 7 years of having bone mets as it tends to be used for diagnostic purposes rather than just checking. However I have had loads of CT scans and they always show what my bone mets are doing.
Onto the pain side, to be honest it can be different for all of us depending where your mets are and what other meds you’re taking, or in your case what other medical conditions you might have. Mine initially showed themselves as an ache when I jogged, not like bone pain at all, more like muscular. And when they spread in 2013 again it was more muscular like. I do get ‘pain’ when bone areas that I know have mets in them are pressed but maybe that’s just me.
Try not to over think what’s happening and I hope that your appointment on Thursday gives you the good answers you need.
Thanks nicky08. I didn’t realise bone mets could be picked up on a CT scan. It’s just my abdomen and pelvis - but I guess that would cover ribs hips and spine? Interesting about the muscle ache. Because my muscles ache too, which they say is fibromyalgia, they say the bone pain would be the same, or it’s just the tendons attached to the bone. I’m frustrated as much as anything and it makes me feel very small to keep telling gps and oncologists and surgeons and haematologists and rheumatologist that I’m in pain, but they all dismiss it. I feel like I’m being unreasonable and neurotic wondering if it’s cancer spread, but it’s perfectly possible. I’ll see how it goes on Thursday and try my best to ignore it until then. Thanks again. Xx
Are you on a hormonal treatment like Tamoxifen? If so, you can get bad bone pain as a side effect.
I have been diagnosed with bone mets and have regular CT scans - fortunately the mets seem to have sorted themselves out at the moment. Before I was diagnosed I had terrible joint/bone pain in my pelvis, but this went as soon as I started chemo.
Eilily, I stopped tamoxifen as I was in too much pain! I also take duloxetine for pain - I tried to come off that once and the pain was awful. I worry that I’m controlling the pain with meds well enough that I’m not seen to actually be in much pain! I’m glad your mets are under control x
I hope that you can get proper answers from your onc soon Sika. When I was diagnosed with bone mets at the same time as primary bc, I alerted onc to pain in my ribs which was like I had fractured a rib it was so bad! It was a bone met. I don’t tend to get much pain from the other mets thankfully. You take care, xx
Thanks Helen and Natalie. There was no evidence of mets in the CT scan. Because this would have picked up bone mets in my spine and rips my onc says there is no need for a bone scan as it’s nearly always in the spine first. I was upset by this at the time as I feel I need to know that my leg and hip pain is not mets, but I’m resigned to it now. I have to assume it’s not mets. It’s not the sharp pain some of you described. If I wasn’t on codeine I’d probably have ended up at A&E at some point though. The tricky thing for me will be knowing when I should get any pain looked into. I’m guessing the pain will be much more intense and feel like a broken bone. Thank you all for your replies xxx