Diagnosed with invasive lobular breast cancer

Hi have just been diagnosed with triple negative invasive lobular cancer. It seems rare. I haven't had mri results yet and am really struggling. Does anyone else have this type and what treatment have they had ? 

  • Hello Flossyn

    I had Invasive Ductal Cancer HERneg Grade 2 whereas yours is Lobular. Your team will look at your results and decide the best treatment for you. It's a scary time waiting for results, but ask lots of questions when you see the Consultant and you will get through it. 
    Wishing you all the best

    Silver 

  • Hi Flossyn

     

    My mum has just been diagnosed with the same, Triple Negative Lobular cancer. May I ask how you have been getting on? 
     

    sending best wishes 

  • Hi there

    yes, no problem at all asking. I am doing ok thanks.  I am a week post mastectomy with reconstruction which has gone well so far.  The triple negative lobular which was discovered whilst getting a margin for DCIS was small at 5mm but despite repeat ops to get margins this wasnt happening for the DCIS.  i was given various options but decided with my surgeon that a mastectomy was the best option to get all affected tissue out.  I wont get the results for a couple of weeks.  It is possible that I will need chemotherapy.  I am hoping that there will be no more invasive lobular found but accept that may not be the case as detecting it by scans post multiple lumpectomies  is very tricky.  The pathology of tn lob is very unusual and i did ask for a 2nd opinion from another pathologist but I dont have that result yet other than a verbal  from my surgeon to the effect that is was the same result. I also got a 2nd opinion from an oncologist whose advice was to ignore the fact it is lobular and treat as if ductal which i found helpful as i was getting increasingly depressed about the fact that i had a rare type and couldnt find anyone out there in any forum with the same.  I did stop looking at forums primarily for that reason.  However, there is a very good UK forum /group for triple negative breast cancer (ukcharityfortnbc.org) which i found helpful as it is specific to tnbc.  The majority of people with TNBC are cured which is important to keep in mind amidst it all.  I hope you mum is ok and am sending my very best wishes to her and you.x