Anyone with invasive lobular carcinoma - er, pr and HER2 negative ?

have gone from a screening detected calcification and small DCIS to an incidental finding of an invasive lobular carcinoma - which is triple negative when re-excising for a larger margin. nothing seen on mammo or utrasound.   I can't find much out on this at all and it seems very rare with virtually no-one on any forum with it - either the triple negative lot or ILC. Feeling very low and lonely having had such a rarity - with little no information - if anyone has this type I would love to hear from you.  Thanks 

  • Hi Nckygrey,

    So sorry to hear about your diagnosis. I'm not able to offer you any insights I'm afraid, just wanted to say that I hope you get a treatment plan soon and that someone is able to give you more info.

    Sending hugs Xx

  • Hi Nicky

    I have triple negative invasive ductual carcinoma. I know it’s not the same but it’s similar. Sorry to hear that you are feeling low. Im happy to talk and help where I can. I have had surgery and just started my first round of Chemo. There is a triple negative forum which may get someone with ILC to reply to you. xx

  • I have invasive lobular but its pr and er pos and her neg 

    • X
  • Hi

    I had exactly the same as you. Mine was picked up due to going to the hospital with breast cysts.  Lobular tends to grow more 'stringy' and many ladies never feel a lump. I had surgery first (bilateral mastectomy) and then chemo. I am now 9 months post chemo. Any specific questions just ask away and I'll try my best to answer them for you. Please try and refrain from googling and find your info from forums and websites such as this one or breast cancer now.

    Take care

    Claire xx

  • Hi Claire - thanks so much I was having a real Friday downer. Only 1 week since diagnosis and  as shock as it is for all of us.  what chemo did you have ?  you are right googling has not be good and mine was completely invisible to mammo and US and no lump - not even string!   bw  Nicky xxx

  • Bi 

    1. My chemo regime was 3 x 3 weekly EC followed by 12 weekly Paclitaxel so 21 weeks in total.  This seemed so daunting at the beginning but actually went quite quickly xx
  • Hi that's what I am having I had my first EC chemo yesterday and feel really tired and sick I only know it's triple neg as waiting for family history appointment for genetic testing when you was on the EC chemo did they send you for heart scans at rest thanks 

  • Hi 

    At my hospital I didn't have any heart scans but I know other ladies on here have had heart scans so I think it does depend on your hospital trust.

    Keep on top of your meds for the nausea as they really do help.

    I felt the worst on EC. Paclitaxel was .uch easier, in my case anyway, but does have its own side effects.

    Take one day at a time xx

  • Thank you for that I am  at st James hospital leeds