Secondary breast cancer metastasised to bones

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I’m new here, recently diagnosed. I had a lumpectomy in 2010, with clear margin and no spread to lymph glands, so just radiotherapy as a precaution. Five years of mammograms were clear. Meanwhile had problems with sciatica, osteoarthritis of the right hip and back problems. Had a hip replacement, and physiotherapy, and have enjoyed nearly 5 years of hiking 5-6 miles and being fully mobile. I started to feel stiff down left side, with frequent stiff necks.

After helping with some heavy lifting (though being careful not to overdo it) I thought I’d strained my back, which was quite painful for a month or so. I git checked out at the doctors because I was also getting palpitations, and after blood tests was referred to breast institute to rule out cancer. After scans, I was diagnosed with secondary breast cancer in the bones, with lesions in thoracic, lumber and pelvic areas, and concern over the L1 vertebrae. All nerve tests were ok, but the pain kept moving around and getting worse.  Bone biopsy showed the same cancer that I’d had before, which is oestrogen positive, so I am taking Letrozole. I had to have dental work done before starting bone strengthening and Ribociclib.

I have ended up in hospital twice because of debilitating pain, and had opioid pain-killers increased, but didn’t seem to help much. Got fluid on the lungs which was frightening, but antibiotics sorted that without needing a chest drain. Constipation turned to diarrhoea and what they called ‘overflow’! I have NEVER been so ill! Saw the palliative care team at the hospital and they were brilliant. Still taking background Longtec, with an anti-inflammatory which seems to be keeping things under control. Had radiotherapy for the L1 vertebrae, and it seems to have stabilised things for me a bit.

Now well enough for Denosumab and Ribociclib to strengthen the bones and target the cancer. If pain is the main issue don’t hesitate to get palliative care team on board. I’m starting to return to more normal activity, with lots of rest, and feeling so much more positive. My husband is a star for the way he looks after me (he was already doing shopping and cooking-lucky me). They gave me steroids because they were worried about nerve problems, and they helped with the pain, which confused things a bit, like riding an emotional roller-coaster. Adapting to new ways of doing things, and coping much better.

Just about coming to terms with the changes in mobility, which were the hardest for me to handle emotionally. Lots of support from friends and family also appreciated. 

  • Hi Crafty Grandma

    Welcome to the group.

    I am sorry to hear that your cancer has come back and is in your bones. It sounds like you have had a really rough time but I am glad that you are having help with the pain from palliative care. 

    It must be a relief to get better enough to start the new treatment and I hope that it does help strengthen your bones and target the cancer. It sounds like your husband is being a great support and I am pleased that you feel that you are feeling more positive and can do more. Having friends and family can be a great support. 

    It can be hard to come to terms with such a diagnosis and the changes it can bring about, please do remember that the Support Line is there if you feel you need to chat things through at any point. They can also have a look for you to see if there is any more local support for you. Many people find Maggies Centre really helpful. I wonder if there is one near you.

    Maggie's | Everyone's home of cancer care

    I wish you well with your treatment and if there is anything that you need or want to ask about, please do so.

    Jane

           

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Hi Crafty Grandma,

    Thank you for sharing t hi is. I’m also new here and after a mastectomy in February have recently found out it has metastasised to my rib and hip. I’ve just started the same meds as you mention. Will keep the palliative team in mind, thank you. 

    Kirstie x

  • They are definitely worth talking to as they have time to listen and the expertise to help.

  • Hey, 

    i am sorry to hear this. 

    How did you find out it had metastasised?xx

  • Hi  

    I too have secondaries on spine, since 2007, seen by CT but no pain as small on T9. from 2020 T8, 9, 10 L1, so on Anastrazole with Zoledronic Acid infusions, CT every 6 months.

    lately have noticed pain in my hips as I lay down to sleep, paracetamol helped.

    i also have family and supportive friends, Nanny to 8, have sewed, painted & created with & for them all! The oldest is now 15… they ask me to mend things and grandpa to fix things!

    how many grandchildren have you?

    thinking of you

    J x

  • 5 girls. Oldest three live in USA now but luckily we went to see them last year before any problems. Didn’t have much time, but the younger two (twins) picked up basics of knitting. Other two are much younger but enjoy painting and play dough with grandma. Hoping things will improve enough to sit at sewing machine again soon, even if in short spurts. I love making things for them using up my fabric store.