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living with metastatic breast cancer

Ch2
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Hey everyone. hope you doing ok today. 

I have breast cancer with extensive bone mets diagnosed du novo (from start) nearly two years ago now. 

ive so far remained stable on ribocicclib and letrozole and coming up to the average time that progression comes and its giving me the heebie jeebies for want of a better word and wonder how some others are fairing on ongoing treatment and I need to try and get my head in a more positive space generally .. my oncologist is cautious to the point of knocking hope out of me in our latest chat and thats really why Ive come here to see that people are managing, get on other treatments that work for them and can retain a degree of positivity. the days where I can feel positive are just so much better even with a raging letrozole headache and general bone pain that might be cancer or might be treatment. id be really happy to hear from anyone as sometimes this diagnosis feels lighter when its shared with others. thanks for talking to me.. its lonely sometimes. my partner died 5 years ago and I have two children 16 and 18 who I worry about in relation to the cancer but I just want to keep plodding on and staying as well as I can for as long as I can. would love to hear from anyone xx 

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    Hi Ch2  I have just sent you a private message.  I feel so lucky because my oncologist is so positive and supportive.  I had breast cancer in 2013 when I was 47 had the op, chemo and radiotherapy etc.  Was diagnosed with secondary breast cancer last year.  I have mets in pelvis, spine, ribs and skull.  I am on ribociclib, denosumab and exemastane.  I take tramadol for the pain and sometime morphine when necessary.  I actually am coping very well and heard of lots of people that are still on first line treatment like us at 5 or more years.  I am thinking of this as a disease that I can live with for many years.  This year my husband and I went to Portugal on holiday.  I walk my dogs every day and have a good life.  I am sorry to hear about your partner.  I am on here most days so happy to chat.  I am also on Macmillan website , one for breast cancer and one called Living with incurable cancer - patients only.  Lots of people in same boat as us so you never need feel lonely again.  Big hugs.

    Lee x

  • Offline in reply to leelaloo

    Thanks leelaloo. Your message is kind and what I need. I’ll check out the other website also on Macmillan and have a read etc. I think I’m having a bit of wobble coming up to the average time re progression and my latest appt with oncologist was not that helpful as she stays with stats and quotes things that are on the more cautious side that I understand but comes across as rather lacking in hope sometimes. I have realised now I need to get my hope from elsewhere and I live in a rural area so she only oncologist. Having hope is important isn’t it. I just went for a walk with my dogs and it’s a sunny day so that’s nice. 
    im

    interested to hear re your pain meds as all I have been offered is cocodamol and naproxen so wonder did you get those pain meds from the off and from oncologist? 

    thanks so much for your reply. It’s really kind of you. I wonder how you found getting travel insurance if you got it when you went away… I’d like to get away a bit more often once my children not at school And wonder how people find it. Will have a look as there might be thread on that on here. Thanks Lee. Appreciate the strength hope and kindness x  

  • Offline in reply to Ch2

    Hi Ch2  my oncologist never mentions stats or anything like that to me.  The first time I saw him he asked me what I knew about my cancer.  I said I know it is terminal.  He said no it is not terminal, incurable but treatable.  He is very positive so I am lucky.  I wouldn't put too much into the stats because they are mostly out of date and everyone is different.  I do believe that being positive and believing that you will live for a long time counts a lot.  Some of the people on the other forum were given 6 to 8 months and that was 14 years ago.  My doctor prescribed cocodamol and when I told the oncologist it wasn't working very well, I got tramadol and also liquid and tablet morphine.  I only take the tramadol now but also have to take cyclizine as they make me feel sick.  I take the morphine when in lots of pain which isn't very often thankfully.  Where do you have your mets?  I also have a back brace which I wear when walking my dogs.  My oncologist sent me to orthotics for it to protect my spine.  The travel insurance I got a quote from All Clear and it was over £2000 pound for the week in Portugal.  I got an annual multi trip policy for myself and husband for £296 so a big difference with Insurancewith.  It is a shame that you can't change your oncologist.  I am currently doing a zoom course on Penny Brohn website .  This one is about excercise, nutrition and mental health and mindfulness when having cancer treatment.  You can also do online zoom courses with Maggies centre.  Do you have any support locally or is it too rural?  I know I am rambling sorry.  

    Lee xx

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