Hi all, I've her+ breast cancer, due mastectomy on 17th May, but last pet-ct showed shadowing in bones that wasn't there 3 months ago, they are saying it's likely to be bone cancer taking everything into account.

I'm devastated, how do i tell my kids? I'm a single mum to 15 & 13yr olds. I'm just in complete melt down at moment, can't think straight for crying, I'm in pain with my boob tumour, not sleeping, and all I can think of is I'm dying. Sorry, just can't see through it anymore x

  • Hi, I was  where you are now exactly a year ago. I was a mess. I too am HER 2 positive. My oncologist told me it's not curable but it is treatable. I had 6  rounds of chemo (Docetaxel) over last summer. It was doable. I now have Phesgo injections every three weeks with no side effects and also take Letrozole tablets daily.  I also have 3 monthly CT scans and 6 monthly ECG's. The breast tumour has disappeared, my lung is healed and the bone is showing good healing. I am back at work full time, I visit my children and grand children and do everything I did before cancer. There are many times I forget I even have it. 

    To tell you not to worry would be stupid we all worry, but wait to hear from your oncologist. There will be a treatment plan and many women are living years and years with secondary breast cancer.

    Like this lady 

    If there's anything else I can help with just ask.

    Judith xx

  • Judith I’ve just seen your post and can’t thank you enough this has given me so much hope on a dark day . Thank you xxx 

  • Hi Lo2022, hope you dont mine me dropping in on your thread, I have incurable advanced matast prostate cancer, it's in my lymph nodes and extensively to my bones, just thought I'd let you know, I have 3 sisters all have had breast cancer, one in full remission and two still taking tablets, even oncologist don't know everything, life is for living stuff what you are told and enjoy it and your family.

    All the best Ulls 

  • Hi

    I'm just starting my journey with a recent diagnosis of Renal Cancer with secondary bone cancer in my spine. Today I was told there was also a spread to my lungs. Try to stay positive - I know this is hard when the dark days come, but reach out and ask for help.

    We're here for each other.

    Take care Stu x

  • Hi Stu, I’m sorry to hear that .. we are indeed here for each other. Since my diagnosis I seem to be only able to take each day as it comes. 
    I am just about to come off the second course of steroids now which always make me feel “normal” but off them I feel so run down , unable to eat, pain and breathing difficulty. it’s short term while my overall monthly treatments of injections kick in I’m told but disruptive to normal life all the same … 

    what medications gave you been given to manage this ? 
    best wishes x 

  • hi Ulls, thanks so much for your message - so very encouraging … 

    life is definitely for living - some days I wish my body would realise this too! 
    how are you getting on with managing your spread? I have also a spread to many areas and find it hard to live with how unpredictable the pain flare ups are while they get to grips with the inflammation longer term and hopefully reducing tumours sizes. 
    when did you / your sisters have a scan to see what meds were working ? 
    thank you and best wishes to you.

  • Hi Lo2022, yes I get random pains, I try to ignore them as I don't wont any more meds just yes, at the moment I am having a problem with my feet and left leg which I think is being causes by nerves in my spine, my left leg is numb from hip to toes and the toes on my right foot are also numb, waiting for oncologist to come back to me.

    I was diagnosed in January 2021 scans and other checks were done just prior to this, as for my sisters, eldest in remission about 15 years, other two have been living with it and taking meds for 10+ years.

    Both breast and prostate cancers are prevalent in my family so no surprise when I was diagnosed.

  • Hi there -this was me a year ago same diagnosis and same feeling that I was dying. I could not see my children who were 8 and ten at the time as I was terrified of breaking down. I’ve spent a year grieving and panicking and being terrified, if you can skip this part, try to as it feels like such a waste of time. Take it day by day surround yourself with good eggs fibs yourself a good Macmillan nurse who can steeer you through -didn’t get on with my first! ( sorry Macmillan!) 

    my meds are leterazole, zolidex jabs bone injections and palbociclib an oral form of chemo.

    You do get stronger and more hopeful as time goes by and like others have said there are lots of positive stories which I know right now might seem impossible 

    here if you need to chat -all the love to you zzzz

  • Thank you so much for sharing this ! It really does help. So much .
    There is so much I would do differently this time, one thing being holding in my emotions . This time if I need to scream / cry I just go for it. Wherever I am ! Which has been quite funny looking back where I have cried ….

    That’s been life changing just letting it out , letting the sadness go and moving on with strength and focus for the next step and the next day (well I try to most of the time )  … when you say you’ve spent a year grieving - panicking etc I can totally relate and it’s so refreshing you’ve said it feels like such a waste of time. That’s really hit home for me and I’ll definitely  take that advice xxx