Why are we never told? Just found out I have pleomorphic invasive lobular carcinoma

Just got my letter that goes to my doctor. And it says I’m grade 2 pleomorphic invasive lobular carcinoma. Why didn’t he mentioned to me at the meeting on the 1st of November that pleomorphic word. Iv just googled that and says 2 years to live. Who invented Google :( now I’m worried. 

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  • Hi   and so very sorry that you find yourself here.

    I would feel the same, why didn’t he mention the specific type. But I think you have to be very careful on Google as you can more or less find anything there if you search, and then not know which search results are just plain wrong and which apply to you.

    I have lobular too, it is different to most other breast cancers. If you do Facebook there is a private group there called Linking Lobular Ladies. It is a mine of information, Personally I have found it very useful.

    One day at a time. Sending you hugs xx

  • Hi Really-Scared

    I also have Lobular and have tried to join 'linking lobular ladies' so I can talk to other women going through the same experience as myself.  When I log into my Facebook account it states 'your membership is pending you'll be notified if your request to join has been approved'.  I was wondering how they notify you or in the absence of any response does that mean I cannot join, joining this site was instantaneous, so I am not sure what happens on linking lobular ladies can you advise please?

    Thankyou :-)

  • I’m also a member of that page on Facebook. Maybe unrequest and re do it maybe just missed. X

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