Lobular breast cancer newly diagnosed

I've been diagnosed with lobular breast cancer. I found out by accident (reports sent to me in error) and go for my first team consultation today. I am terrified. I've spent the last week in bits. 

  • Welcome to Cancer Chat Amanda although I'm sorry to hear you've been diagnosed with lobular breast cancer.

    I know this must be a very scary and unsettling time but our community are here for you and I'm sure some of our members who have been on this journey will offer their support and advice to you soon.

    I'm not sure what time your team consultation is today but I want to wish you the best of luck and let you know we're thinking of you. If you have any questions before and/or after your meeting, you can talk things through with one of our cancer nurses on 0808 800 4040. Their helpline is open Monday - Friday between 9a.m - 5p.m and they'll do all they can to help.

    Kind regards,

    Steph, Cancer Chat Moderator

  • Hi Amanda

    im so sorry that you were informed like that! I know how scary it all is as I was diagnosed with invasive ductal BC in Nov. I was all over the place at first, however once you speak to the team looking after you and you get the full treatment plan you will feel a lot better I promise!

    You will feel better soon and you will get better soon..someone told me this is just a bump in your road and i think that's true! 
    sending love xxx

  • Hello, 

    I know exactly how you feel - I was there nearly two years ago.   When you have limited information you just fear the very worst - I was convinced I was going to go downhill and die in agony not too much later. However, here I am still - my cancer is lobular metastatic breast cancer which means it has gone out into my body and is therefore not curable.  But it is treatable and these days, we are told to think of it as a chronic condition.   After further tests you will be given a treatment plan which will help you to see better how things will be planned for you.   I have a CT scan every 3 months (various other scans at the beginning to include bone scans and MRI scan) and my cancer is now treated with tablets.   No surgery, no chemo, just tablets.   I do get fatigue from the tablets and there are other side effects which affect people differently, but all in all, I manage to lead a near normal life.

    It would help you if you can join a group of people with a similar diagnosis - try Breast Cancer Now as they offer a lot of support.   I have joined a group which meets face to face each month and we support each other.   Some people have been on this group for many years, which gives us all hope.

    Good luck and best wishes


  • Hi Amanda, sending you lots of positive vibes. I was also diagnosed with Invasive Lobular Cancer today. The waiting to find out is torture but I hope you're feeling better after your consultation yesterday. I feel a lot calmer now I know what this is and that there's a plan in place. Did they say when you'll start your treatment? I've got an mri in 10 days to make sure there's no additional smaller areas and then will have surgery. They said I might get away with just radiotherapy if my lymph nodes are completely clear. Sending you lots of love ️ 

  • Thank you to everyone. At my MDT they explained I needed an MRI (which I had today) and that I may need more ultrasound and biopsies. It's a scary time but the support is amazing. It's just keeping the black fears at bay that's the hard bit.


  • Offline in reply to KLF49

    Me too. Lobular breast cancer on Monday.  Still waiting for my scan and them the plan. They did say I would be getting a lumpectamy and radiotherapy  and hormone tablets.