Out of the blue - Diagnosed with metastatic breast cancer in Jan 2021.

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I wondered if there are any others out there in a similar situation. 

I'm 46, found a lump in my breast in December, but no other symptoms. In Jan 20231, diagnosed with metastatic breast cancer, which has spread to the lungs. It seems that being 'mets de novo' (first diagnosis when cancer already stage 4) is rare - about 6- 10% diagnoses.

I'm having palliative treatment - letrozole and palbociclib, as well as zolodex to bring on menopause. It seems surgery or chemo not recommended as first line. (Yet to understand this)

I'm actually feeling fine on the treatment at the moment, but it would be good to connect with others in a similar situtation. It's hard to connect the way my body feels at the moment with the seriousness of the diagnosis and the statistics which say that only about 25% mets cancer patients survive more than 3 years.

Best wishes to all those coming to terms with life-limiting illness.

  • HI 

    Sorry to see that you have found yourself on here, I was diagnosed in August with BC (at 33) which they found a few weeks later had actually spread and had become secondary. I have 2 mets on my spine, I am also on the same treatment as you and I am currently half way through cycle 5, I have recently had my first scan results and have healing to the bone and shrinkage.

    I was told when I was diagnosed that this wasn't curable but to look at it as a chronic illness that is manageable as long as the treatment carries on working. Try not to google for statistics as I did this and it really made me frightened and scared, but a lot of the statistics are years old and the treatment options have come on along way over the years.

    I am on a Secondary breast cancer forum on FB and this question gets asked many times, how many years have you been living with this? and there are some ladies on there that are 15years+

    Don't get me wrong I have days when i'm very down and I worry if ill get to see my kids grown up, will I ever get to an age where I have grandkids? i really don't know but I cling onto what the other ladies have gone through and hope that I will be telling someone in years to come that i've been living with it for 20years +

    It is a lot to come to terms with and I think its been made so much harder as we have been diagnosed during a pandemic, we can't just get on with normal life at the moment, I have my kids off school which means i can't work, i'm hoping once things get back to normal I will have something else to focus on other than I have cancer.

    Good luck with treatment hun and if you need a chat you know where I am, i've met some lovely ladies on hear that have helped me.


  • FormerMember
    FormerMember in reply to macca5861

    Dear Macca5861,

    Thanks for your reply,

    It's good to hear that you had a positive scan result recently and good advice not to look at statistics (although I have already sucummbed to this temptation!)

    If I carry on feeling as OK as I do now with the hormonal treatment, it doesn't seem so frightening. I'm still working and my kids are old enough to (mostly) get on with online schooling independently. 

    Of course, as you said, it's hard coming to terms with probably not getting to see my kids much into adulthood, or be a grandma. But hopefully still some good years left, which I shall appreciate all the more intensely for knowing my time is limited.

    Crossed fingers schools will open in March! 

  • Hiya

    I'm glad your feeling well, my side effects are also minimal, fatigue and achy joints mainly.

    Yes I hoping for schools to reopen soon haha..

    fingers crossed we have many years of treatment left in us, and once this stops working there's many more available.


  • FormerMember

    Hi I was diagnosed exactly the same in December told incurable but treatable .I started chemotherapy 22 nd Jan Abraxne three weeks on and then break for a week .

    I'm starting to lose my hair but absolutely determined to fight it .What ever it takes .My tumour in my breast has shrunk all ready it's like a reverse of how it came.

    Love to prove the oncologist wrong .as they just assume the flecks in lung are too small to biopsy so could be anything .

    Good luck Hun XXX mes me if you want x

  • FormerMember
    FormerMember in reply to FormerMember

    hi Jackidnb,

    Thanks for the message and I hope your tumour continues to shrink.

    best wishes,


  • Hello Macca5861, im sorry to hear about your diagnosis. I too was diagnosed recently with invasive ductal carcinoma last month at age 34 but has not spread. I just want to ask about the scan, is it because it has spread to your nodes thats why they have to do a complete scan? Sorry for asking i am also anxious and have many questions :( 

  • Hi Jane, 

    i'm so sorry to hear about your diagnosis, and i'm pleased it hasn't spread for you.

    I'm not sure tbh, they found that mine had spread to lymph nodes from mammogram and ultrasound i think (from what i can remember) but the spread to my spine showed up on my CT scan which is why they did the bone one to check exactly what was going on.

    anymore questions just ask hun xx

  • Hi Macca, thank you for the reply. I hope you are feeling better now. I wish you all the best with your treatment and sending love your way xxx