Hello Misty K. I was incredibly lucky in that my ILC made my boob feel heavier than normal which took me to GP despite clear mammogram six months earlier. I was luck that ILC invaded a duct and what was spotted by a very eagle eyed consultant radiography was a small ductal tumour. The biopsy showed lobular features so had an MRI when my 80mm ILC was found. MRI also showed a grade 1 tiny thing in my other boob. So I had a lumpectomy and one lymph test on the left for the little thing and a mastectomy and lymph on the right. Right came back 2/3 lymph positive so having a full axillary clearance this Thursday then Chemo about six weeks later with Radio at some point in all this. Like you I have done a lot of reading and there is so little known about effective treatment for ILC. My chemo benefit is 5-9% between 5 and 15 years so happy to go for it. Thank you so much for starting this thread the lobular world can feel a bit lonely at times.
Hello jennyb1
Thank you for your appreciaton. Iām just glad to have pulled we lobular ladies together here. x
Hi, I found a lump around Christmas 2023, inner, lower, left quadrant. I saw the GP early February, 1st time seeing him, he was rude and abrupt so I didnāt bother telling him about my lump and just told him my antidepressants werenāt working. I had my hubby with me at the time but as I not told him about the lump he couldnt speak up for me.
April I couldnt feel the lump but could feel a different one upper, outer, left quadrant.
3rd May I again saw the GP, by now hubby knew of it. GP referred me on the urgent 2 week referral. Appointment came through and wasnt until mid June. We paid private for tests.
24th May I had mamogram on both, 3D mamogram on the left, ultrasound on both and both armpits, followed by biopsies. 9mm on mamo, 7mm on ultrasound. I was then told I had cancer.
4th June biopsy results 7mm invasive ductal, ER8, PR5, HER2 (low) grade 2, stafe 1. the report said I have a mix of fatty and dense breasts.
I was transferred back to the NHS.
24th June I had lumpectomy and sentinal node removal.
4th July surgery results. Clear margins, 1 node taken and clear. But it was now 35mm and multifocal, invasive ductal and invasive lobular. Now stafe 2.
None of the lobular showed on any of my pre surgery tests. My oncotype score was 14. Currently waiting to start radiotherapy, oncologist appointment is on 4th September.
The consultant and the MDT are refusing to do any further tests until my annul check in July next year. I have no idea if the first lump is still there and whether any hidding in my right boob.
I have twice been refused brca2 testing, 2012 England and 2018 Wales, Iāve been referred again to genetics after my surgery.
My mum had cervical in 1977, lobular in March 2012, reoccurrence in 2018 and died Feb 2020. Her sister, their mum and a few other family have all had breast cancer. My mum, aunt and grandma where 66/67 when diagnosed, aunt and grandma lived just under 5 years, my mum just under 8. My dad had prostrate Feb 2012.
Im 61.
Sorry for the long post. I donāt know what to do next to get further tests and I cant live on 3 hours sleep for the next 10 months.
Sorry to hear that. If I were you I would push for both more genetic testing given family history, and also an MRI scan. I had a lump which didnāt show up in mammogram and they did an MRI of both breasts because of that. Found another lump in my other breast, so had both removed and radiotherapy. Now Iāll get annual MRIs. I also have dense breast tissue.
Hi Lobular Ladies.
Having read through this thread so much has resonated. I had a lumpectomy early august with 7mm 'pleomorphic ā lobular BC. ER and PR+ 8, HER2 neg.
Everyone said its all very positive etc, good prognosis. When i mentioned lobular i felt it was always brushed off āoh it doesnt make any difference etcā. Then i looked at 'pleomorphic ā which raised a lot more questions - less than 1% (some studies say poor prognosis) - still no answers.
Had an appointment last week with what i was told would be an oncologist but turned out it was tha radiologist to plan the radiotherapy. Apparently im not due to see an oncologist or have an MRI or oncotype. I rang the breast care nurse and she said she would ask the radiologist my questions but he didnāt know the answers before so whatās the point?
I think i might have to see someone privately
Hi Iām so sorry you are not getting the answers to your perfectly reasonable questions.
I take it that you did not get an MRI scan before your lumpectomy surgery.
I was diagnosed after finding a lump through ultrasound, the mammogram never picked up my lobular cancer.
Initially told lumpectomy and rads , only after MRI did they discover 2nd 6mm lobular.
Missed on both mammogram and ultrasoundā¦which changed my treatment plan to single mastectomy.
Itās so important to insist on MRI for lobular, and my oncologist has agreed to push for annual MRI checks rather than just mammograms.
I think it does vary enormously on where you live as to the treatment you receive. I was very lucky that my local hospital had a specialist breast care centre, with everything in house.
The team have been absolutely amazing , informative, reassuring and thorough , but I know not everyone is so lucky.
Trust your instincts and keep asking those questions. You deserve answers, is it a financial or medical decision behind the lack of MRI?
Wishing you all the best in your recovery.
Hi. The radiologist said that they normally order an MRI for lobular but because mine was small and an actual lump it wasnāt thought necessary.
The pleomorphic bit worries me because the studies ive seen say it can be more aggressive, but again he said it wasnāt important. But if heās not an oncologist and actually didnāt know anything about it, how could he know?
I had a lower likelihood of recurrence than you in the next 9 years but Iām overwhelmed by the thought that it can be dormant for ten to 15 years and therefore more likely to recur after that period anyway.
Thanks, Caron, useful to me too.
(Just pegging this by responding, so I can find this later 
)
Just found this and the video link - really helpful thank you for sharing
Hi badger Iād be interested to know if Bradford are supporting MRI for your annual checks - Iām at Pinderfields and so far (first one post diagnosis) they have refused 
Hi I am also interested in the mri issue as I have repeatedly asked for mriās for my annual screening but told I canāt have one, I know other areas in the UK do get them, I live in Nottinghamshire
Hi is a breast mri available privately if already have a history of bc
100% agree. Realism over Over-optimism is my preference too; I like to know what I am dealing with.
Oh my! What a lottery as to whose care you are under. I cannot imagine how you must feel having been refused genetic testing with your family history. Hoping things have moved on positively for you.
They refused me too. Calderdale and Huddersfield NZhS Trustā¦ Just had my first annual mammogram. Itās clear but I donāt feel reassured!
Hi all, I am a member of https://lobularbreastcancer.org.uk/
I went to an amazing day recently organised by them in conjunction with the Manchester Breast Centre and the Christie hospital. Lots of talks and a chance to ask questions. Lobular bc uk are aiming to get evidence to present to NICE about the importance of MRIs and longer term follow up for lobular breast cancer. Iām really hoping that this is successful, it seems so pointless to keep following people up with mammograms which donāt pick up lobular! It is unfair as well that it seems to be such a postcode lottery. Iāve been lucky in Manchester being offered annual MRIs since my cancers (lobular and ductal) werenāt picked up on mammogram.
This is really interesting to know. Iāve signed up to join the group and hope Iāll get further information about taking part in the NICE evidence gathering. I am also going to pester my consultant about annual MRIs now I know you can get them in Manchester (only 25 miles from me but different health authority). Cheers 
Hi Katone,
Ive just read your message here with regards to ilc, i had a 24mm size lump removed 2x lumpectomies for clear margins back in 2021, grade 2 no lymph node involvement, followed by rads and tamoxifen. I stopped the tamoxifen 6months later due to side effects, then put on anastrazole for a year. Caused alot of problems with my osteoarthritis, with the agreement with my oncologist at the time, was given a 5% chance of reoccurance.
To cut along story short, i then got diagnosed with sbc grade 4 extensive bone mets in December 2023. To say it was a shock was an understatement. If anyone wants to know more just ask i dont mind. Initial G2 T1, ER+/HER - 8/8.