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breast cancer and bone mets

Catspaw
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Hi all.  I was diagnosed with breast cancer 5 years ago, had the chemo, mastectomy and radiotherapy and the usual meds for oestrogen +ve cancer.  1 yr ago i was diagnosed with bone metastases while having my much delayed reconstruction surgery (seriously, thank you Covid for that or id be in a different situation now) when I had a CT scan post op cos the docs thought I might have had a clot/  No clot but a C5 metastases.  I was totally symptom free which is why i'm grateful for the delay in surgery or id still be none the wiser.  I was taking abemaciclib initially 150mg twice daily but had to be reduced to 100mg due to the most HORRENDOUS diarrhoea, 3 monthly leurprorelin injections which are quite uncomfortable but now have them in my abdomen around the surgery site which is numb so....bonus?  and 4 weekly inj of Faslodex 1 injection into both bum muscles which left a constantly bruised and itchy feeling and as soon as it died down, next dose was due YaY!

Through all that Im still working long shifts and looking after the house etc. struggling with the diarrhoea.  Every bag I possess had loperamide in it.  I found that taking just 1 before going our made such a difference and if staying at home, only taking it after bouts (like it says in the book lol). It still wasnt great but i was pretty much living a normal life with frequent medical visits interspersed, CT scans bloods, jabs etc/  All seemed to be going ok, despite the brittle nails, and what the sweet jezus is my hair doing??  Still symptom free, BUT I just had a nuclear medicine bone scan and ..

and its worse.  Several vertebrae and almost all my left pelvis soooo now im off the 4 weekly jabs and the horrible abemaciclib (silver linings anyone?)  Have had a blood test to see if i make enough of something called DPD (not the dedicated parcel delivery people) and if so i'm getting started on a chemo called Capecitabine 2 weeks on 1 week off.  

Now after 5 years of being pretty positive about things, feeling generally well, I have to confess....I'm absolutely bricking it.   I have no clue obviously how the Cap is going to affect me, the first question the doc at my appointment asked was if I had any hip pain.  I didnt but now 2 days later of course I do.  And various points on my back where I know the mets are living. I have had to take a few days off work just to process it all, this essay is part of that processing...sorry...

Im scared of pain, im scared my vertebrae will collapse and i'll die from suffocation, 

Anyone have any words of wisdom? advice? about the Capecitabine or anything lese related to bone mets?

Thank you and especially for reading.

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    Hi Catspaw, 

    Thank you for coming here and sharing your story. Sometimes you just need those few days off to process everything so you did well to take a little break from work and coming here is also a good way to offload and try to make sense of your situation. Poor you, you have been through a lot and suffered some rather unpleasant side effects from the abemaciclib and the injections. It must have been difficult to still manage to work through this and do every day house tasks while trying to manage the diarrhoea. I am so sorry to hear that the latest bone scan revealed that it is worse and yet your sense of humour and wit shines through your post despite everything you are having to deal with, for example when you mention that DPD is not the dedicated parcel delivery people. So have you heard back yet as to whether you make enough DPD? We have some useful information on our website on capecitabine which might be of interest to you if you end up getting this treatment. You will find out more there about how capecitabine works and possible side effects associated with this treatment. 

    As you noticed hip and back pain now which wasn't there just two days earlier when you saw the doctor, I would perhaps get in touch with the doctor again and mention that you are now noticing pain just so they are aware of it and so that they can help you too finding adequate pain relief if you need it. It's also a good idea to share with them your fears about your vertebrae collapsing or anything that is making you worried at the moment. 

    Our cancer nurses also have a helpline you can ring on this free number 0808 800 4040 - it is open Monday to Friday from 9am to 5pm (except for bank holidays) so don't hesitate to give them a call if you would like to talk to someone about this and get some advice. 

    There will also be other members of our community who have been in a similar place and had a breast cancer diagnosis with bone mets and I hope that they will be along soon to share their story with you as it does help to talk to others who understand what you are going through at the moment. 

    I just wanted you to know we are all here for you anytime you need to talk. 

    Best wishes, 

    Lucie, Cancer Chat Moderator

  • Offline in reply to Moderator Lucie

    Hi Catspaw.  I am so sorry to hear all that you are going through, the place nobody wants to be.  I had Stage 3 breast cancer twelve years ago, with chemo, radiotherapy and then tamoxifen and letrazole as well.  This year I had hip and back pain, doctor sent me for an X ray and found two bone lesions in my pelvic bone.  He told me that they were benign.  I was then sent for physiotherapy.  Eventually the physio sent me for a MRI.  This came back with wide spread bone mets in pelvis, spine and ribs.  From being told there was nothing wrong to be told I have secondary breast cancer with no cure has been pretty hard to deal with.  I am now on ribociclib (three tablets every day for three weeks) then one week off.  I have a denosumab injection every four weeks and on exemestane too.  I am waiting for a full body nuclear bone scan too as I am sure this has spread to more bones than they think.  I dont understand why we all seem to be on different medication.  I do get scared as well with all the stories and possible outcomes when in spine.  I am just taking every day at a time.  I have been booked off work.  Doctor gave me morphine tablets and morphine liquid.  Please keep in touch.x  Lee

  • Offline in reply to leelaloo

    Hi Leelaloo,

    Thank you for your reply.

    Well I've just today 1st Jan (Happy New Year ha) the Capecitabine. 2 weeks on, 1 off. I think medication differences are maybe to do with what we've had before but not sure. I was on exemestane initially then changed once bone mets found. 

    12 years! I feel I should congratulate you, is it appropriate? Oh hell, congratulations.im *** I only managed 3. 

    I've got niggling lower back pain and hip, I don't know why. It eases with paracetamol thankfully. I keep being advised that bone mets is worse at night so I'm hoping this is just a bad back giving me sciatica lol. 

    I hope the morphine works for you. Do you see yourself going back to work? Has radiotherapy to bones been mentioned? One of my docs, for the first time yesterday,  mentioned cutting hours. That is making me think. I'm gonna wait fir my next CT scan (soon) and discuss things going forward.  I hope your NM bone scan is better than you think. Let me know please. Cat xx

  • Offline in reply to Catspaw

    Hi Catspaw,  I have been in pain in hips and back for few months now.  Oncologist gave me morphine but it really didn't agree with me, constipation, heart burn, stomach ace etc so I now take tramadol which works for me.  It just makes me nauseous so I take cyclizine for that.  I hope that you get on with the Capecitabine.  Doctor has booked me off work for three months and then he said he will do it again.  I work in jobcentre which is a customer facing role and he said with the chemo tablets it would affect my immune system.  I dont know whether I will return to work.  He said the chemo is ongoing and will keep going as long as it works and as long as I can tolerate it.  I dont see myself going back to work but who knows,  I am thinking of asking for early retirement on ill health grounds.  I am amazed that you are in work still.  You sound like one strong woman so I salute you.  Yes they have referred me for palliative radiotherapy for the pain still waiting though, think Christmas is holding things up.  I am thinking of you, please keep in touch x Lee

  • Offline in reply to leelaloo

    Hi Lee,

    Glad to hear you've got sick time. Take what you can get. I'm at work because I feel well. If the Capecitabine causes immune issues I dunno what I'll do. I happen to work with some quite ill people unfortunately,  I've been wearing masks. I don't want to give up but I may have to space my days out. I only work 3 days, 12 hrs each day. 

    I'm happy to hear you've got radiotherapy lined up, you must tell me how it goes, I'm interested about that. 

    Keep on keeping on, you got this!!

    Cat

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