Secondary breast cancer in bones

Hi 

first time poster . Recently diagnosed with secondary breast cancer in bones 5 years after breast cancer treated with lumpectomy and 5 rounds  of radiotherapy during Covid . Due to restrictions I only saw surgeon once at the initial appointment and at the and after my surgery.

I never saw an oncologist face-to-face. Only had two telephone conversations. 
This time is so different so many people involved all lovely and supportive. I have had 2 MRI 1 CT scan , bone biopsy to confirm cancer . Every I time I go for a test the news feels worse . Cancer now in all spine and pelvis. Pain is now more under control due to morphine .

i am struggling with how different this feels , have appointment with oncologist in two weeks the waiting is the worse . 

  • Hi Hotshot,  I am sorry to hear about your diagnosis.  I had breast cancer 13 years ago and had op, chemo and radiotherapy, five years of tamoxifen.  I was diagnosed with secondary breast cancer with extensive bone mets in September 24.  I have been on treatment of Ribociclib, Exemastane and Denosumab for just over a year now.  Like you I had to have a bone biopsy which was horrible.  I have it in pelvis, hips, all of spine, ribs and skull.  I take tramadol for the pain as I don't like morphine.  I have a good quality of life and try and enjoy every day.  I walk my dogs daily which does help with the pain.  My husband and I went to Portugal last year and have just come back from Iceland.  I know about the waiting, it is horrible isn't it?  I had MRI on Monday and have nuclear bone scan on 23 and then see oncologist.  The waiting is horrible you just cant help worrying.  So far cancer is stable so fingers crossed it stays the same.  Have you started treatment yet?  It sounds like our diagnosis is similar.  Happy to chat anytime.  Sending you hugs.

    Lee x

  • Leelaloo thank you so much for your reply . Your positive attitude has given me such reassurance.

    i haven’t started treatment yet hopefully when I see oncologist next Monday . 
    I am also a dog owner and out every day plus been doing regular aquafit for years . Agree that exercise helps with pain plus the mental boost from being outdoors . 
    I have been on slow release morphine for 3 weeks which is keeping pain under control . Pain was the reason I ended up getting the original MRI my GP had been treating me for arthritis which wasn’t a bad call as I have joint replacement. 
    I had no idea that I could get secondary in bones I have only just had my 5 year all clear mammogram. 
    I was so shocked when I was told really expected to be told I had a slipped disc !! 
    So good to hear you are still going away on holiday we have a trip booked to Greece later in the year I thought it would be a no go due to insurance.

    Hope you enjoyed Iceland we went couple of years ago and it’s beautiful although I was worried about falling over on the ice as I knew then I don’t bounce .

    Thank you again for your positive reply you have made this feel so much better hearing from someone either similar symptoms.

    Hope all goes well either way your scan and oncologist appointment hugs to you x

  • Hi Hotshot,  yes I went to doctor for pain in hips and back he referred me to physio and she sent me for MRI.  I was shocked as expected to be told it was arthritis and it was over the phone so not great.  Anyway I am managing fine.  I found that Insurancewith is the best for travel insurance for cancer as it is run by someone who had cancer before.  I was quoted by Allclear for over £2000 for a week in Portugal and Insurancewith cost £287 for a year multi trip policy for myself and husband.  Greece will be lovely, whereabouts are you going?  Iceland was amazing, it was our third trip but the Northern Lights this time were so beautiful.  Hope to keep in touch, let me know how you get on with your appointment on Monday.

    Lee x

  • Hi Lee 

    thanks again for reply to be told over the phone is must have been a horrible shock . I don’t know how doctors can say the words it’s cancer to so many patients must be hard for them but over the phone feel so wrong .  
    Thank you for travel insurance company I will certainly look into it . Will wait until after my appointment on Monday so I will know treatment plan . We are booked to go to Athens but not until December so have time to sort it out . 

    Do you also have a scan booked next week ? A busy week for us both . 
    I am trying to stay positive and continuing with my normal busy retirement. Oddly now the pain is under control I feel better than I have for a couple of years . 
    Take care of yourself xx