Mum with Stage 4 Secondary BC & Bone Mets - Advice Needed

Hi All

I hope this is okay me writing in this. My mum has recently been diagnosed with Secondary Breast Cancer in her right breast and it has spread to multiple parts of her bones, including ribs, sternum and a few vertebrae. One of her vertebrae in particular is quite affected so and is in a lot of pain around the area. She is currently bed ridden, she can get up on some days but ends up in extreme pain which retires her back to bed. Luckily she is no longer working (however financially we need to sort out if she can get any benefits) but spends most of her day in her four bedroom walls. Is there anything you can recommend for her to keep her mind active? She reads a lot but I think she is slipping into a depression as she has no interest in anything whatsoever. It’s heartbreaking seeing her in pain but it’s even worse watching her become a shell of herself. She had a full hysterectomy around 3 years ago after around 10 years ago of surgeries cutting out abnormal cells - all of it feels a bit unfair! But this isn’t fair for anyone either way. 

She started treatment yesterday - she is on Denosumab , Letrozole and Palbociclib. An injection every 3 months along with the tablets every day (Palbociclib 3 weeks then a week off) - Is anyone on these too? The doctor advised there wouldn’t be any hair loss, but hair thinning will probably be likely - along with the dental problems. Has anyone got any tips?

Sorry for the long ramble, I guess what I would love help with if anyone has any ideas is just:

How to make her more comfortable with the bone pain from the bones mets?

Any tips for the medication she is on?

Just any other advice you can give? We haven’t asked for the prognosis, I think we’re all too scared too. The doctor said this treatment can only work for two years - I guess I’d love to know anyone who has been diagnosed with Sec Bone Mets and lived a lot longer…

Thank you for reading, wishing you all the best too as I know none of us want to be on this page xxx

Hi Blue21,

Welcome to the forum - it’s a really good place for advice and support and really good of you to seek advice on behalf of your mother. Sorry to hear she’s currently feeling so unwell and in pain. It sounds like she has been through a lot over the past few years. 

I wish I could answer all your queries (not an expert on stage 4…) but wanted to suggest you post in the “living with secondary cancer” section of the forum, since your message will be much more likely to be seen/replied to by women who have had similar treatment and pain issues - and who are therefore well placed to share their experiences and anything they found helped ease pain and uplift spirits.

You might also want to phone the Breast Cancer Now nurse to ask for advice (telephone number at top of the web page). Breast Cancer Now also offer a “someone like me” service - usually it’s for the person who has breast cancer, I’m not sure if your mother may at some point feel up to speaking to anyone or even if this may help you to have support and advice for your mother (you could ask if this would be possible?)

Re financial side and benefits, you could try ringing MacMillan. Maggies centres and The Haven may also be able to provide advice, although I’m sure women posting in the living with secondary cancer section will get back to you with lots of helpful info and support as soon as you post there.

Hoping your mother finds something to ease the pain, help her to be able to follow an interest and get some enjoyment soon - when I was recovering from treatment I always found the sight and sounds of nature engaging, enjoyable and calming.

Sending you a big virtual hug. I hope you are getting support yourself from a friend, partner or other family member.

Seabreeze X         

That sounds so tough and unfair, and you need to remember to look after yourself too, to help you provide all the love and support to your mum. Off the top of my head for things to do I can think of podcasts and audiobooks, mindfulness colouring books, listening to music, and puzzles, crosswords, word games available as phone apps.

I think the advice in the previous reply is really sensible too. You have to be assertive and insist that someone helps with pain relief as a priority. This can be really hard but the  breast cancer care nurses on the breast cancer care helpline are really well informed and helpful. Your GP or hospital should be able to refer your mum for psychological support too. I was referred by the breast care nurse at the hospital I attend.

Good luck with it all :tulip: :sunflower:

Hello. My aunt has been diagnosed with breast cancer at her right breast After 15 Yeats of having surgery at her other breast . I am her main caregiver now and I wanted to reach out to people also supporting breast cancer patients with bone metastasis. How is your mother now? Has she benefited from treatment?