Advice please re. new diagnosis

Hello, I was diagnosed last week with secondary bone mets in my spine and pelvis, after having breast cancer in March 2020 and mastectomy followed by chemo and radiotherapy. I am starting my treatment plan next Thursday -Ribociclib and Fulvestrant, plus monthly infusions of Zometer.
My pain has suddenly got a lot worse today so I have been prescribed Oramorph in conjunction with paracetamol (I can’t take anti inflammatories as I have a stomach ulcer.)
I was trying to be positive for my family but being given Morphine has really scared me into feeling that this will be my new reality of terrible pain and getting addicted to opiates. I have a complex home life as I have an 11 year old son with learning and behavioural difficulties, as well as two older children in their early 20s.
I’m not sure what I’m asking really! Just to hear your experience of using morphine and what to expect going forward with the treatment. Very grateful if anyone has time to reply.
Best xxx


I don’t have experience of taking opiates but can you have painkilling patches? I seem to remember these can help. I don’t think you need to protect your family from your pain, maybe they are doing the same thing and appearing a lot more upbeat than they feel. It’s bad enough having a grim diagnosis but trying to be noble and nice to everyone else is too much in my opinion. If you feel like ranting telling everyone how unfair it is and how much pain your are in - why not? It’s also really bad that you can’t take some medicines because of your stomach ulcer. So I forgive you for being off the scale angry and thinking “Why ME!” It isn’t fair, you haven’t been selected by a nasty demon for torture. Let everyone know the pain is intolerable and you must have peace from it. Try relaxation and maybe shouting loudly (out of earshot maybe) and stick pins in models of consultants. That is what I would be doing. Childish perhaps but liberating to shout shout and scream on occasions.


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I’m stage 4 SBC with mets in my shoulder. I take slow release morphine tablets twice a day to manage the pain. My oncologist assured me it was better to be relatively pain free than get hung up on the fact I take an opiate every day. He feels it shouldn’t be a big problem to come off them. They really have eased the pain - I couldn’t sleep properly for months because of it.
I don’t know if this helps you decide but it’s just my experience


Hi, lovely ladies

I was diagnosed with sbc to spine, hips, ribs back in december. Currently on abemaciclib, denosumab and fulvestrant, 4 months in. Feeling angry, dumb, denial is all part of the shock.
Your cancer team, consultant will run through evrrything with you re treatment etc, offer radiotheraphy if pain gets too bad, i was but have held that treatment back for now.
I was also told to take paracetamol 2 tablets, twice or 3 times a day = 8 tablets as a baseline for pain, was given opoides, but not keen on taking it, as makes me drowsy, hate that feeling of not being able to function day to day, it has worked for me. I have reduced this once the pain has subsided, easy to take with a ulcer i believe.

You are not alone, this site and the ladies here are amazing and have helped me loads when ive reached out for advise or just to rant.
Be strong, here if need to quiz us on anything

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It’s quite remarkable how useful paracetamol and ibuprofen can be but seems unlikely somehow that they will work for secondaries. I read a book by Jane Tomlinson who was diagnosed aged 26 and lived to have another child but sadly died at 42 I think, but she raised huge amounts for cancer research and I loved the book. She was an inspiration to me after my first diagnosis in 2003. I was diagnosed again in 2022. No secondaries yet as far as I know.

I forgot that when she got diagnosed with secondary breast cancer she used paracetamol as a painkiller. Leaving that out is a sign of increasing memory loss - bring it on, i’ll soon forget i am having cancer treatment…

Cheers Seagulls

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I would go along with what the other ladies are saying but could I also encourage you to seek some extra support for your son if necessary. I have a son who is autistic and has a severe learning disability. He is grown up now and lives in a little flat with 24/7 support. When he was younger I remember struggling to get enough respite care for him. When I had my gallbladder out I managed to get two extra nights of support! However because your health issues are ongoing I think you should qualify for regular respite. If you haven’t had a carers’ assessment please could I encourage you to have one.

Very sorry to hear you have recently been diagnosed with secondary BC.
The treatment of Ribociclib fulvestrant and a bone strengthening medication worked very well for me when diagnosed with SBC in spine, resulting in a CT scan with no visible active cancer. I didn’t even think that was possible. I hope it will work for you like that too.
When I was originally diagnosed with primary BC many years ago, the next day the pain in my breast was suddenly really bad, and my breast nurse specialist told me then that she found more of her ladies had experienced more pain but that that was related to a hightened state of stress from the diagnosis. At least that knowledge did calm me down.
I hope your pain gets under control soon. And that your treatment will give the best of results. Big hug.

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Hi, so sorry to hear about your diagnosis. I was diagnosed with widespread bony mets last September and was originally on oro-morph and it really helped with pain. I was finding that I was my own worst enemy and not taking it when i needed to though. Ive now been swapped to slow release morphine, with a slightly higher dose during the day. I’m now able to do lots more and really happy with how things are. I also take regular paracetamol as my community Macmillan nurse says that it enhances the benefits of the morphine. Hope this helps x


I have extensive Mets in spine and pelvis and just been prescribed morphine. Currently I haven’t used it but managed on co codomol ( with Dr advice) . I guess I too am a bit scared of starting morphine as it may limit driving and activity .
It may well be that once you get going on ribociclib and fulvestrant pain will ease .
I guess everyone is different but I have found that I have spells of pain, and then spells when it is right down low or hardly have regardless of whether I take painkillers or not. I do hope pain eases for you and that you get all the help you need . I have read the posts about slow release patches so must bare that in mind if I find oromorph difficult.
All the best

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Thank you all so much for your really helpful replies. Unfortunately my pain got so bad, even using the Oramorph and paracetamol plus the odd co-codamol, that I ended up inA&E yesterday and have been admitted. I saw a doctor from oncology and they are going to repeat my MRI scan and possibly start me on steroids and radiotherapy, which may push back my chemo starting but I will do anything not to feel like this. I am generally a very active, stoic person but this pain makes me shake and cry.
Hugs to all you brave women and thank you again for your support xxxx

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Hello, would you mind me asking what you mean by extensive mets? My first ct scan and mri said extensive in hip and pelvis. Also mets in spine. I’ve not seen any actual images, only the report. When I next see the oncologists I’m going to ask to view the images of my bone scan. I’m scared of doing any or too much exercise as I’m not terrified about breaking my hip! Can’t have radiotherapy they’ve said or hip replacement, saving those for further down the line! To be honest I don’t use too many pain killers but I walk a bit wobbly and feel better with a stick.

I think extensive just means ‘several ‘? I know that two vertebrae in particular have what they call ‘significant ‘ lesions

I’m vague to be honest but I know some people who have only been told they have one or two so guess extensive means several .
It’s so hard isn’t it not knowing what’s safe to do and what’s not . I got in a twist about it recently and guess it is on my mind .

They did do radiotherapy on my sacrum right at the beginning to prevent nerve involvement and I now figure that they know the best time to do radiotherapy both from a safety point of view to prevent fractures or nerve damage and for pain relief.

I too have some reserved for later on my sacrum again and my spine if needed

I picked up from my oncologist two weeks ago that not moving at all for fear of doing damage is not good but of course if something causes too much pain on movement then best not to do it or limit that activity ( easier said than done )
I did ask to see a CT scan and next visit may ask to see the MRI scan. Thus far I’ve just seen lots of white bits briefly on the scans which I think are the tumours.

I hope you get all the clarity and help you need — hard isn’t it .
All best wishes .

Thanks for your reply. Sometimes I can walk a good bit, 2.5 miles the other day but over a period of time. We went to Disneyland Paris in March with all the family, by the first dinner time I’d walked 3.5 miles and had to hire a wheelchair after that! Yes it’s very hard to know what to do. I was diagnosed with SBC in November 23 and first ct scan in February after treatment showed stable. Next ct scan is on Tuesday! Hope you’re keeping ok

Well done for all that walking. I think I would want a wheelchair after that. Theme Parks are all very well but I think I can live without visiting another one. I haven’t been to legoland let alone Disney land


It’s hard to know what to do for exercise. Some people say it’s better to do some and they feel better for it. This is why I want to see my images because you don’t really get any advice from the oncologists. Hope you’re keeping ok

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I agree. I would like to see what my bone scans show if I had any. I have been prescribed zoledronic acid infusions for three years to prevent bone mets but I do not know how this works.

I feel like we are mushrooms kept in the dark and shit thrown at us. Don’t quote me on who taught me that expression.


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Yes secondary breast cancer is not a great place. I am here too and I really don’t want to be! I have been on this journey feeling unwell in 2019, got nowhere with several GPs, found a lump in April 2022 and went through a mammouth primary diagnosis early 2023 only to have a second summer 2023 and third diagnosis March 2024. All I can say is keep positive and do your own research. take care. xx


Really sorry to hear that, sending you a big hug. I am home from hospital on paracetamol and slow release morphine capsules which seem to be the best pain control so far, although they do make me sleepy. I have managed to do an hour’s work too which I was pleased about! I am starting first cycle of chemo treatment tomorrow.
Very best wishes and I don’t know what I would do without having you all to message. Xxxxx

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Hello again, I hope you are all doing as well as possible. Just wanted to ask re. Riboclibib and Fulvestrant, I have been on these for almost a week and to start with didn’t experience any side effects but now have nausea and diarrhoea - am taking anti nausea tablets. Did you find the side effects wore off after a time on the treatment? Many thanks if you have time to reply. Xx

Hey, glad your treatment is slowly taking shape. Im not on those drugs but I’m on Abemaciclib. I had mire side effects to start with but my body seems to be coping better now and they are less severe. Also, when i started on the slow release morphine, i felt tired but again, that seems to have improved over time, just a bit tired when we increased my day time dose but feeling much stronger now. Good luck with everything x