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 Kirstymarie,

    I am sorry to hear that your doctor never mentioned this. This is the trouble with Google and it is why we advise people not to consult "Dr Google", when they start out on this journey. Most of the information is aimed at the more spectacular cases, is not appropriate to you, doesn't supply any answers and yet it manages to scare us even more. If you want to find out more about this type of cancer, why not phone one of the nurses on this site, for advice and more accurate information? Their number is 0808 800 4040 and they are available 9 - 5 Monday to Friday.

    Please keep in touch. As you know, we are always here for you.

    Kind regards,

    Jolamine xx

  • HI Kirstymarie,

    I know that you don't want to have chemo, if you can avoid it. Perhaps you would be better to consider having it, when this is such an aggressive type of cancer - maybe worth talking about with the nurse, if you do decide to phone? Having said this, I must stress that I am not a doctor, but talking with someone else may give  you a better idea of why your oncologist is recommending chemo.

    Kind regards,

    Jolamine xx

  • HI Kirstymarie,

    It's been a while since we were in contact and I wonder what you decided about treatment? I hope that you are doing well.

    Kind regards,

    Jolamine xx

  • Hello there. Iv had 3 surgeries now :/ lumpectomy and full axillary clearance. Then lumpectomy again as not clear margins and then mastectomy on 14th Feb so just recovering at the moment. I haven’t seen anyone again yet. But I know I defo am gonna be having radiotherapy but think I won’t need chemo xx

  • Hi Kirstymarie,

    My, it sounds as if you've been having a time of it! What a pity that you didn't get clear margins after your first surgery. Can I ask the reason for your mastectomy after 2 lumpectomies - did they not get a clear margin the second time either?

    I am sure that you feel glad to have all of your surgery behind you now and hope that your recovery is going well. Did you not need chemo after your mastectomy, or did you eventually decide not to have it? I'm sure that you'd be very relieved if you didn't need it.

    Please keep in touch and let us know how you get on. We are always here for you.

    Kind regards,

    Jolamine xx

  • Yeh not clear margins again. He said can do a lumpectomy again but might not get clear again. It’s so far over 77mm. I couldn’t have reconstruction yet. Got to wait a year which was up setting and still coming to terms with that. He said because of having to have radio. I said to him if the  percentage is low with the chemo I will properly refuse it. He said I would prob have a low onco score. But I suppose will have to wait to see what the oncologist says when I finally meet one as only met my surgeon so far.  
    xxxxxx

  • Hi Kirstymarie,

    The mastectomy was probably the wisest decision then. I faced a similar question when I had my second bout. I opted for a double mastectomy and have never regretted it. Unfortunately, I couldn't have reconstruction, due to scarring from previous, non-cancer-related surgery, but I manage fairly well with an assortment of prostheses for different activities. I am surprised that you haven't had your onco score yet - here's hoping that it is low. I expect that you'll see your oncologist sometime within the next month.

    It can take longer than a year to get a reconstruction in many areas, so don't be surprised if this happens.

    Kind regards,

    Jolamine xx

Reply
  • Hi Kirstymarie,

    The mastectomy was probably the wisest decision then. I faced a similar question when I had my second bout. I opted for a double mastectomy and have never regretted it. Unfortunately, I couldn't have reconstruction, due to scarring from previous, non-cancer-related surgery, but I manage fairly well with an assortment of prostheses for different activities. I am surprised that you haven't had your onco score yet - here's hoping that it is low. I expect that you'll see your oncologist sometime within the next month.

    It can take longer than a year to get a reconstruction in many areas, so don't be surprised if this happens.

    Kind regards,

    Jolamine xx

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