Invasive lobular breast cancer

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I finally got my diagnoses yesterday and it was what I had expected and what they had prepared me for, they diagnosed Invasive Lobular Breast Cancer, which I think they said feeds of oestrogen (sorry all a bit of a blur so can only remember bits of what they said).  Since than it has been non stop as had blood tests and am booked in to have a bone scan and a body one too. Hoping to have a mastectomy before Christmas depending on scan results. I have now gone in to overdrive with panic of what if it has spread and it postpones surgery etc. How do you all cope with the days/weeks after diagnosis as there is so much to get your head around. Have to say what a wonderful team I have looking after me, I am so grateful to be in such good hands. This group also has been a godsend, I have felt so supported by you.

Sending love and healing hugs to you all xxx

  • Hi. 
    Reading your post is like looking back at my life only a couple of months ago! I had my first clinic appt on Aug 31 and this was followed up by bone scan, ct scan, mri scan, bloods, pet ct scan, appointment after appointment! Full on. I was diagnosed with the same - invasive lobular breast cancer. Being at work and continuing with my usual daily routines was a massive help for me. I only told a couple of people until I had the full picture about the diagnosis and treatment plan (which took a while as there were delays with one specific and necessary result). Anyway, had the lymph node biopsy in Oct and then mastectomy with immediate reconstruction on Nov 5th. Both easier to manage than expected. Recovery continues to go well for me. I saw my consultant today for my Oncotype DX results and have been told that I won’t need radiotherapy or chemotherapy. I’ll go onto hormone therapy. I have a meeting with the oncologist next week. 

    sorry, that’s a massive amount of info on my situation, but hopefully it helps you to know that you’re not alone and you will get through this. I would say keeping busy is helpful, and definitely stay away from Google and looking at all the potential scenarios. I found it easier to just deal with what I was told, rather than go looking for all the potentials. I too worried it had spread, but luckily they got my results quickly and reassured me it had not. Hopefully will be the same for you. 

    If you have any questions, I’m happy to answer. Take care. Xx

  • Thank you so much for your message it means a lot and I am so glad you are recovering well. I think my biggest fear right now is that I am going to be told it shows up on other areas from the scans, but I am trying to keep positive and remain working etc. Sending lots of love xxx

  • Oh gosh. I feel your pain. I think in some ways this is the worse bit. Once you start the actual treatment process weirdly your anxiety drops off a bit. It’s kind of out of your hands?? And it sounds like you have safe hands there. Those are amazing scans and sounds like they are being super thorough. I remember having my first meeting with the breast surgeon and mri scan the same day. I was a zombie. Just awful- looking back. But you have to remember it’s their bread and butter - there’s nothing they can’t handle. 

    most lobular is estrogen positive. And I think I’m right that tends to have a lower likelihood chemotherapy treatment path. 
    my guess - and it is completely that - is that you will have operation, maybe radiotherapy and definitely hormone treatment (either AI or tamoxifen depending on if you are pre or post menopause). Those are a whole different story but generally manageable.

    keep busy , keep as fit as you can. I really believe the stronger you go in the stronger you’ll come out. The wait is the worst. You’ve got this 

  • Thank you so much for your message, it means a lot. It was all such a blur in the room when the consultant told me. My husband brought a note pad but we both sat there in tears so didn't get to write much down. Sending lots of love xxx

  • I was diagnosed with lobular in March . I had never heard of it , assumed breast cancer was a lump but lobular doesn’t tend to do that .

    once you have the scans , you will know more . I had an MRI before my lumpectomy . 
    That showed 1.5cm but after the op it was 2cm.

    It’s really hard . Just take one day at a time x

  • Hi

    There is a fab FB page called Linking Lobular Ladies that you can join. It's for ladies going through exactly the same as you and the support on that page has helped me get through some really dark times.

    Please join us, you will be made to feel very welcome Pray tone3 

    Sending lots of love

    Jo

  • I’m on there , it’s great .

  • Do you post much on there? I've made a couple of good friends on the page that I also private message. The support on there has been amazing and really helped me these last few months x

  • Thank you so  much for letting me know about this group, I have put a request in to join xxx