Lobular Carcinoma

Hi

I was diagnosed with ILC in January 2023. Bilateral mastectomy in February - overoperated due to BRCA2 mutation.  Histology has come back and the cancer was significantly larger than they thought. I also had the Oncotype test which is 'intermediate' requiring discussion and referral to Oncology for possible chemo.

 

I'm devastated; going from a small tumour and curative surgery to this is overwhelming. Has anyone else had experienced anything similar? Im feeling very isolated.

  • Kt 

    do you no your oncotyoe score ? 
     

    love Lara ️

  • Hi Lara, 

     

    Thank you for replying!

     

    No not the actual number, only that my score means chemo may be on the cards after a discussion/referral to Oncology. 

     

    Xx

  • kT 

    I also had the Oncotype DX test my score came back low under 10 so you could be lucky I panicked over the test and to my suprise I didn't require chemo . 
    they refer to oncology for lots of things maybe hormone tablets ect it doesn't mean you will definitely have chemo 

    rve score for me would have to be extremely high gif me to have had accepted chemo as I didn't want it and was going to have to be pushed hard to actually have it .

    love Lara ️

     

  • My oncologist told me it's a lot to do with age also Im 48 if you are younger they do tend to push chemo 

    but make sure you are happy to accept as I no it's silly but I wasn't going to have chemo unless it was a high score it's said that a score over 26 requires chemo they will tell you your score if you call them 

    lovr Lara ️

  • Thanks Lara - I'll ask them. I'm 47 so similar to you. Xx

  • This happened to me my consultant told me prepare for chemo my oncologist rolled her eyes 

    I was 6 weeks in limbo buying wigs brows microbladed ect 

    then oncologist had a very different plan 

    love Lara ️

  • Kt 

    I was on your shoes they never mentioned Chemo then the last appointment with consultant they spray it on me that was my lowest point I flew through everything but when that was dropped on me I was in a bad mindset 

    but like I said oncologist has a different story I hope you will have the same luck 

    do you have to take the tamoxifen? 
    love Lara ️

  • Thank you - I hope so. I'm feeling very down but have faith that the oncologist will be better placed to tailor my treatment. 

     

    I think the plan was always for me to have tamoxifen. I go in Thursday for a re excision to obtain a clear margin as my tumour was right at the edge of the breast tissue. 

     

    Thank you again for taking the time to reply! ️

  • kT 

    please don't worry about tamoxifen either I was worried sick I'm on mo th 7 of these now I have had minor and I mean minor side effects don't listen to horror stories about these I promise you 

    I will only have the tillomed brand these are the best that suit me I will not accept any other brands I had the workhardt brand for a few days I had flushed sleeos tears after days I put them in the bin went back to my usual tillomed brand and felt like Lara again my chemist have made a note that I will only accept my preferred brand diva of course that's me but I'm a fizzy girl and neeed to stay being fizzy if you no what I mean 

    please come back here anytime I'm here to help chat along the way if I can help in any way lovely 

    love Lara ️

  • I was diagnosed with ILC in November 23. Had lumpectomy but margins were not clear and so recently had re excision.  Initially cancer 1.2 cm with plan of lumpectomy and likely radiation. But it seems goalpost now forever moving as cancer grade 3 and 2.9 cm with as said margins not clear.  Positively SLN clear.  I’ve had Oncotype test so now looking likely I’ll need chemotherapy  - score 28.   I’m confused as to why they didn’t do mastectomy if not in lymph nodes to prevent spread and I’m worried all this delay may result in it having spread.  I go back Tuesday for results.