Diagnosed with invasive lobular breast cancer advice please

  • 73 replies
  • 267 subscribers


I’ve today been diagnosed with ILC

all over the place mentally

one minute strong then catastrophising and terrifying myself my googling things

 as you can maybe see from the time can’t sleep!
heres my story so far and I’d love to share notes and especially love any reassurance

noticed a lump about a month ago

a mammogram last week showed nothing , neither did my routine one in january

a ultrasound last week did show a suspect lump (the one i felt)

axial looked normal on ultrasound 

biopsy done then

results today show ILC, grade 2, early stage ( he wouldn’t give a number)

its oestrogen positive don’t know yet about herceptin (I was told ilc usually negative) 

plan is mri tomorrow to check size and location and to check the other breast and lymph’s before probably lumpectomy in july

then radio then meds for 5 years

i think i can handle all that and actually wondering if I’d be better with a mastectomy as this kind of BC notoriously hard to find …..any thoughts?
also I’m completely  freaking out that it’s spread, sounds silly but now I can feel like my underarms are swollen! And I had awful heart burn earlier this year which I’ve just found out (thanks google )is a possible symptom of spread in ilc. I’ve been fit and well my whole life

oh and now I’m also stressing they will find it in other breast on mri

basically just having a middle of the night complete whitey

lonpve to compare notes or take advice


  • Bless you completely normal to feel this way Rolling eyes I had ILC stage 2 7cm in total one 5cm one 2 cm in same breast.Ask for a CT scan as that gives you reassurance that no spread elsewhere. It is an awful rollercoaster ride but you will do it. Waiting results is the hardest part. I had a mastectomy and node clearance and 10/14 nodes showed signs so thank goodness I had it. That bought adjuviant chemo into the mix as well as radio. Can't say was easy but not as bad as I feared. I just thought do whatever to carry on with my life. Positivity is the way. But times you need to just let it go. It is 3 years this year from diagnosis so you got this girl  Thumbsup

  • Thankyou so much

    they are doing an mri today 

    I will ask about the Ct scan too

    May I ask how did they first spot your ilc?

  • Hi c22

    Sorry to hear that you have been diagnosed with breast cancer.  What you are feeling is not silly, once we are diagnosed with cancer our mind goes to all sorts of places.  If you are looking for information on your type of breast cancer rely on sites like this one and breast cancer now as the information is much more up to date than google.

    Wishing you the best of luck with your mri.

    Best wishes


    Community Champion Badge

  • Hi 

    I missed a routine mammogram due to COVID restrictions. I had been swimming and had a slight pain in one side of my breast I thought I had pulled something. I felt a disc like ridge so went to GP.Two week referral and told straight away it was suspicious! And it was . Once you get all results and get a plan it seems to help you face the next stages. Bless you Heart

    • Do not Google x
  • Hi, I'm sorry to hear you've been diagnosed with ILC. It's not surprising that you're really anxious and can't sleep. We've all had similar reactions, but please don't google as it'll only worry you more and a lot of the information is out of date. I was diagnosed with grade 2 ILC last May, and I had a mastectomy and reconstruction in June, just a year ago. (That's because I had 2 lumps in the same breast. Now on Anastrozole for 5 years and Alendronic Acid for mild osteopenia).It was really stressful, and the waiting before surgery and a more precise diagnosis is the worst part. Try to keep busy and do things you enjoy doing, even if that's really difficult, because it'll help to focus on other things. I asked for a CT, but they wouldn't do one. Take heart in the fact you've been told it's grade 2, early stage. Once you know more, you can focus on the treatment. Let me know if you have any other questions about ILC. Take care x 

  • Cherry tree Thankyou.

    i have a BUNCH of questions - do you mind if I ask? 

    out of interest did they spot yours on a mammogram/ did you feel it?? How big was it?

    im frightened that the ultrasound has underclubbed mine and the mri will tell me that it’s bigger and wider spread.

    the surgeon did reassure that even if this is so it doesn’t massively change the plan (well apart from a lumpectomy becoming a breast removal!) 

    when did they find out it was 2 lumps (at mri?) or did you know that from the start? And was it boob and nodes or just boob? Did you have radiotherapy? 

    gosh - sorry . That’s a lot please feel free to ignore?

    congratulations on being a year on. What a lovely inspiration. How are you feeling about the new boob?? 

  • Hi c22, I felt a small lump and went to the GP. Three weeks later I had a mammogram and an ultrasound. They saw it on the mammogram and when I had the ultrasound they took biopsies from the two areas. The second area was more of a subtle thickening, which I hadn't noticed. The US measured the lumps at around 1 cm each, but after surgery I was told they were both 2 cms. It's quite common for ILC to be larger than indicated on mammograms and scans. I had to have a mastectomy because it was 2 lumps and also a SLNB and they took out one node, which was clear. I didn't need radiotherapy or chemotherapy because the node was clear. I think they do radiotherapy for a lumpectomy. I'm quite happy with the new boob, which is an implant. At first I really didn't know what kind of reconstruction to have, but in the end I decided that I didn't want a scar from hip to hip from a DIEP reconstruction. However, I know that a DIEP reconstruction gives a more natural feel. I'm also quite small (B cup) and I just have a small scar to the side of my new boob, which is fading gradually.  The surgeon did a good job and it's a good match to the other one. I found the following site very useful for ILC: LobularbreastcancerUK Please try not to worry too much about possible spread etc until you have more specific results. If I've learned one thing in the past year, it's that it's best not to torture myself with possibilities, even though I know that's hard in this situation. Keeping busy and active has kept me sane. Feel free to message me if you need to ask any more questions. Let me know how you get on.

  • Ok that’s really interesting and such a positive outcome. The more I think about it the more a mastectomy makes sense- especially how tricky ilc is to spot. Seems like your process was tough but completely logical and so pleased to hear your outcome was good.

    I'm quite small boobed - and Breast feeding trashed them anyway!!  just be interested in symmetry I think. And decreasing the risk of a come back most of all. 

    anyway that’s for another day. Thankyou for your help!

    how long until you were up and running as normal after your operation (I do actually literally mean running if that’s a thing you do!) 

  • I was out for short walks withing a week and back at the gym, starting with gentle exercises after about 6 weeks. Probably up and running after 8 weeks. Doing the physio exercises regularly after the surgery also helped. my arm was quite sore for months afterwards, but it's a lot better now. I felt very tired after the surgery, but my energy levels gradually got better.