What kind of cancer is this? My tumour wasn’t diagnosed as it was “mobile” (GP) and “non existent” (breast doctor at clinic), didn’t show up on mammogram but did show on ultrasound and was confirmed as ILC by core bipsies. I’m having an MRI next Tue, not sure what for. Does anyone know about ILC? My tumour is 1.2 cm x 9mm.
hi Rosemary
don’t know about ILC but think the MRI is to check that your bones are all OK …mine we’re fine re: cancer (good news) but I didn’t really want to know about the impending arthritis in my left knee!
the other thing is I am about 2 stone overweight - well probably 3 now and there is a big gap between the end of the bones and the beginning of the skin … so you get to kow what fat looks like …
apart fom that and the fact it’s a bit uncomfy it all went well!!!
good luck
love FB xxxx (you’ll have to excsue my sense of humour)
Hi Rosemary,
Invasive Lobular is notoriously difficult to spot on a mammogram!! After a few new tumours/recurrences I was having a regular mammo and got the all clear. 6 months later I found what i thought was a large lump when I was showering which was eventually dx ILC and found to be 7cm. My cancer is a particularly aggresive fast growing type and even with a needle biopsy and core biopsy was still not correctly diagnosed but because of my history was suspect. This was all 9 years ago now - my original dx was 18 years ago. Sometimes in younger women they will do an MRI scan of the breasts, but you will know if this is what they are looking at cos you end up with your boobs in a basket LOL. Otherwise it may well be just to check out what they call ‘baseline’ for the record and future reference. Good luck.
Dawn
Hi Rosemary,
I can second what Dawn says, though she has a lot more experience and knowledge than me - I had invasive lobular cancer last year which did not show on a mammogram but did on the ultrasound - I’ve just had my first yearly mammogram which was followed up with an ultrasound because lobular is so hard to spot - mine was exactly the same size as yours. I had an MRI which showed the tumour, but not the LCIS (lobular cancer in situ) which is pre cancerous cells which was found in the histology from my lumpectomy so I had a mastectomy as my consultant said it could remain as is or become invasive eventually so would be mad to leave it.
I think lobular is quite rare - 10-15% of all cases.
Don’t know if this helps but you’re not alone!
Love
Sally xx
I think you wil find a lot of ladies on here have lobular cancer. I didnt know when i was diagnosed there were different types of cancer.
When you have your lumpectomy they test the lump anyway to check that there are clear margins around it.
I got told lobular is like a splat of paint rather than a clear lump.
My breast was mishapen and i think the cancer had been there for a long time. I had 4 mammograms taken at different angles and the consultant still would not say it was cancerous until i had the results of the needle biopsy.
I wont bombard you with too much info its better to get the surgery over first, ask about sentinel lymph node biopsy. I had this and my nodes were clear.
Just come on here and ask and you will get lots of help from everyone.
It is a very very frightening time for you, I had a bone scan and ultra sound scan at diagnosis.
Take Care
Love Rx
I was was diagnosed with invasive lobular 11mm in left breast last November. It was picked up in a ultra sound scan. Had found a cyst which didn’t show on the mamogram but did on the ultrasound and that is when two suspicious areas were identified. Followed by MRI scan, needle biopsies, lumpectomy and then diagnosed as lobular. Due to it being lobular and its position under the nipple I had to have a mastectomy and a sample of lymph nodes were taken.
They were clear but as there was only a 1mm margin between the margin and the chest wall this was followed by radio therapy.
If you type in lobular to the ‘search’ at the top of the page you will find recent threads on there which may be useful.
It seems that about 10% of breast cancers are lobular, slightly harder to identify and slightly higher risk of recurrance in other breast . There is more informtion on the bcc site.
There are quite a few of us ‘lobular ladies’ around, obviously we are as rare as the type of cancer, so you are looking at a smattering of about 10% of us throughout the site. But I quite like being classified as rare and less common just confrms how ‘special’ we are!!
All the best for the mri scan. Its very noisy, you have to lie on your tummy and place your boobs into two containers which looked like ice cream cones - I am afraid it set me off laughing. There was cotton wool in them to stop my breasts from moveing from side to side. As I told the operator being 34A there was no way that my breasts were going to move full stop let alone from side to side, she then had to get more cotton wool to fill in all the gaps 
Seriously though I do hope it goes well
Magsi x
Hi Rosemary
Another lobular lady here, 48 diognised last December, had WLE,rads and now Tamoxifen, physically fine(ish) emotionally a mess(LOL). It is a frightening time. I was going to suggest the same as Magsi type in ‘lobular’ in the search facilitiy. It may answer some of your questions. With regard to having an MRI I was never offered this (part of me wishes I had) and you will read on the other threads it varies from hospital to hospital. I would be pleased that they are being thorough and not penny pinching!
Wishing you all the best for Tuesday, take care Alice.
Hi all
Another lobular one here. 44 diagnosed this Feb.1.9mm. The only extra piece of knowledge I can give is there is a 10-20% chance risk of lobular occurring in the other breast at some time or in the future.The MRI scan picks it up better as mammograms find it difficult due to our younge age and denser breast tissue. It worth having as the MRI scan gave the all clear for my other breast but showed in my affected breast another suspicious area which after surgery was identified as lobular cancer insitu, a papilloma and a cyst… I had a mastectomy in the end, my choice as I wanted rid of it all. Now having chemo as had one node affected. Im hoping they will offer me MRI scans in the future along side mammograms but dont know yet.
I know you can get one privately for a few hundred pounds Alice if you want piece of mind.
Lyn x
Hi
Another lobular lady dx this feb 08. Like Dawn aggressive and I am to have Herceptin. You are very lucky to be offered MRI - this is the only accurate way of identifying lobular. Mine was not picked up on a mammogram in August 2006 apparently I was clear. By christmas 2007 I noticed the nipple was inverted and went to GP. He founded a thickening and was straight to hosp. I found ultrasound in my case unreliable identifying apparently three tumours (multifocal) 1 ins, 1/2 incs, 1/4 ins and told mixture of lobular and ductal. I was told no choice but to have a mastectomy. Immediately before op I asked surgeon if tumours could have grown - i had to wait 5 weeks for op. Was told extremely unlikely. I was given SNB as well as again ultrasound apparently showed nothing in nodes and I never remember them being examined. After op tumours were both lobular and found to be 5cm and 2cm and it was in 3/4 nodes. So back for full clearance. Now on chemo route with 4 FEC/4 TAX which I guess is because of node involvement and size of tumours. At this point in time it is fair to say i do feel very bitter that i followed the system had regular mammograms which were of no use to my sort of cancer. Yet I asked BCN if mammograms could spot lobular and she said yes. I have a worry what is happening in the other breast what with the aggressive nature of my cancer as well. But I know I should be grateful I found it when i did and am being offered every treatment going and Herceptin is now available and hope it all helps.
Once found the treatments are the same. Good luck in your treatment. You will get much support on here.
Starfish x
I’m also a lobular person! I was diagnosed on 14th May. Had an MRI week last Tuesday. I was told this was to see if the cancer had spread to the other side as apparently it spreads more easily than ductal cancer. On the plus side, it is easier to treat. The MRI showed a small growth on the other side which was then checked again by ultrasound. The doctors are pretty sure that the growth is nothing to worry about and there is no spread. I know how easy it is to worry. I’ve known about the cancer for nearly 7 weeks now and am still waiting for treatment. My surgery will be next Friday. Thankfully a cancellation came up or I would have been waiting another 4 weeks.
Hi
me too DX 21st Dec04 with ILC after first mamo which didn’t really show the hugeness of it! just a tiny line ~ when I went to have the ultrasound (to be on the safe side) I was told that they didn’t think I had anything to worry about…WRONG!! anyway ILC is uncommon and doesn’t really show up on mammos ~ breast specific MRI scans are the best ~ wish I had had one! I had chemo first then surgery followed by rads and TOUCH WOOD!!! am well, so good luck. Rosemary
Hi Rosemary,
I’m so sorry to hear about your diagnosis. Good Luck for the MRI on Tuesday, I’ll be thinking of you.
I am just so worried. My partner is leaving me, he can’t cope with my panic. I can’t eat, sleep or stand up straight.
Hi again.
I was like you totally panicked, cried a lot, could only think about cancer and nothing else for weeks. Watched TV but didnt. My operation was a month from diagnosis. Horrible waiting. I lost a stone in weight with worry. I used my breast nurse a lot. Rang her all the time even though Im sure I was annoying for every little thng. It does get better. Im 5 months on and not in that positive zone yet as Im having chemo but life is bit easier. I also went to the GP for sleeping tablets . When youre body is so tired but mind active you did need help to sleep. I only used then for 3 nights.
Lyn x
Rosemarywine you are ahead of e I have just been dagnosed and get my core biposy results on thursday but bc nurse and cos say i will have to have mastectomy as my area of DCIS is 8 cms !!! Am absoluely sh*tting myself, so i do understand how you are feeling.
My heart goes out to you facing this with partner problems, can you get some counselling to try and deal with the emotional pain you are in? Ithink i have seen it mentioned on here somewhere, or maybe join a group and meet people who have had the same? Thanks god for this site - hey? I would be totally out of my mind by now without it.
Love
Dulcie
xx