Hi
I was diagnosed with lobular breast cancer 3 years ago on a routine mammogram.
Since then I have been looking at the evidence base of how services in UK manage annual screening of those diagnosed with LBC.
The evidence base for annual mammograms is not strong , studies show that mammograms false negatives can be over 60% . It seems like yet another example of how LBC & DBC are treated the same , they clearly aren’t
I appreciate that MRIs are very expensive , private ones seem to cost over £1000 but they are the evidenced based gold standard for detecting LBC.
I do wonder if the evidence that LBC tends to be diagnosed in older women isn’t because it actually occurs more in older women it’s that’s we get diagnosed later . There is some evidence that it’s slower growing .
I am very interested in how women with LBC feel about their annual screening mammogram . Do you feel safe ? Have you tried to get an MRI ? How would you feel about pushing to scrap your annual mammogram & going for a bi annual MRI ? This is what I am Going to propose to my provider .
We need more randomised clinical controlled trials looking at mammogram versus MRI follow up screening of women diagnosed with LBC.
Thank in advance .
Hi
I’ve recently been diagnosed( Nov 2023) with lobular breast cancer. I felt the hard patch which at mastectomy was 60mm. I had my first mammogram in Jan 2022 which was clear. When I went for my mammogram as part of the diagnosis they struggled to see it and had to do a cross sectional one. Like you I was wondering how helpful a yearly mammogram on my remaining breast was going to be… I have read about 3d private mamograms and wondered if they were worth the £300 cost compared to the standard NHS 2d…
Good luck with that! I agree with you and currently have annual mammograms on my remaining breast. I was diagnosed with IDC/DCIS and LCIS two years ago. I’m actually reasonably happy that the IDC and DCIS has been sorted with a mastectomy but I’m concerned that the LCIS makes me more prone to a lobular invasive cancer on my remaining side.
I’ve asked for scans which were refused. I paid for a private consultation myself and had an ultrasound which I also had to pay for. It was okay but I’m left with no reassurance whatsoever that I haven’t got LCIS or lobular cancer in my remaining breast. It certainly wasn’t spotted on my earlier mammograms.
They’ve sent me on my merry way with hormone therapy (I haven’t had chemo or radiotherapy), and they think I’m a bit neurotic! Granted I didn’t have any lymph or node spread and it was low stage and grade but how do they know it’s not there if they don’t scan? My nurse has a good feel around and says she can’t feel anything but they just won’t scan me!
I don’t get much reassurance at all from the annual mammogram (especially as I had been recalled three times from previous ones) but then told all was well. Things had been missed I’m sure. I’d really like an MRI but I know I won’t get one unless I pay for it myself. That somehow seems wrong. I’ve been allowed an appointment with my oncoplastic breast surgeon this month (haven’t seen her in 2 years). I’m dreading it really as I think it will be more of the same - nothing, and I’ve witnessed some eye rolling in the past 
. If the boot was on the other foot……
All the best x
Hi, I was diagnosed with LBC in June 23 and have since had a mastectomy an radiotherapy. After researching about Lobular, I’m also worried about the effectiveness of an annual mammogram.
Have you seen the site lobularbreastcancer.Org.uk? I found it a useful resource and they have a downloadable letter template to use to ask your consultant for an annual MRI. I’m going to do this but not sure it’ll do much good as I’ve been turned down verbally when I asked about having them.
Also there was a good podcast And Then Came Breast Cancer on 5 March about lobular BC - it’s by Victoria Derbyshire. Can recommend that.
Take care 
I had a normal mammogram in May 2021 but 6 weeks later noticed a lump. I was immediately referred by a great GP for reassurance. I had an ultrasound along with a biopsy of the lump which showed a 18mm lobular cancer. As it hadn’t been seen on mammo they sent me for an MRI. Thank goodness I did! It showed a larger lobular cancer in the other breast (turned out to be 38mm and this was still not seen on the mammo or felt on breast examination).
The initial statement for ongoing follow ups was annual mammograms for 5 years to which I just asked what was the point when absolutely nothing had been seen? The consultants took on board what I was saying and agreed to annual MRI but still want mammograms too as to quote” you might develop another type of cancer which does show up on the X-rays “. It’s essential, in my opinion, to have MRI for lobular but even that underestimated the tumour sizes so would not necessarily pick up very small ones.
By the way I am a retired radiographer so knew that mammograms have their limitations with dense breast tissue but even so was amazed there was no clue on the mammograms even in retrospective looks at the images.
I’m almost 56.
I have just been diagnosed with ILC, told 15mm and no lymph on u/s but awaiting MRI next week .
I had a normal mammo ( 2nd one) Jan 22.
August 22, I went to GP with a lump that I found in RB. Breast clinic didn’t do mammo as I’h had one < 12 mths ago. I had u/sound and was told was a cyst, which they drained. 3 days later, lump is still there.
I went private and had a thorough ultrasound, they looked at my mammo ( and Jan 19 one) but said sure was a cyst. It was 15mm, coincidence?
Fast forward to Feb 23 - a lump ( benign) on my breast skin but thorough GP could feel something inside. Referred me.
Had a mammo this time ( 2 years since last one).
When I went in, radiographer was looking at it with a magnifying glass. Did ultrasound. It took a lot of pushing to find the lump.
Biopsy confirmed ILC but am waiting MRI this Monday .
I asked did i have dense breasts, I’d seen Julia Bradbury talk about them. Radiogropher said yes, consultant said not particularly.
I’m going to get a definitive answer on this.
My planned treatment is lumpectomy & radio plus AI.
But i don’t trust mamos, that is my greatest fear when I’ve come out the other side- assuming no surprises on the way .
I’m just going to listedn to the VD podcast, as I found out this week that she had ILC. So do Tom Hanks wife.
You have so accurately summed up everything I am feeling at the moment. 5 wks post mastectomy after original grade 2 ductal cancer found . No lymph nodes involved.After op grade 2 lobular found on pathology report as well.
I feel so worried now as nothing was found on mammogram scan or biopsy. I am now terrified I have got the “sneaky” cancer in my remaining breast but noone seems concerned.
I have had a mammogram on the other breast but that is all I’ve been offered.
I can’t stop worrying.
So sorry, it’s certainly not ideal.
If you can, get a private referral and pay for a scan yourself. It’s not cheap but I can tell you it was the best £800 I’ve spent because it gave me peace of mind. You can get a referral to another consultant privately for about £200 and they can reassure you that alls been done that should have.
So keep in mind that you’re very early days and it is hard to come to terms with what has happened. It’s a process to get through that so be kind to yourself. I’m okay 2 years on and I’m sure you will be too. It it doesn’t stop me worrying. Do press to get the reassurance you need. Good luck X
Trading these comments is both validating of how I feel & shocking .
I know it’s wrong that we aren’t being offered MRIs at least every 3 years , but just not sure I’ve got the strength to have a battle .
Really resonates with me how we get labelled , difficult demanding , neurotic & the eye rolling .
I am
Thinking of a private MRI , the ones I saw were over £1,000 . If any one knows of reliable cheaper options please let me know.
We aren’t crazy or demanding , just intelligent pioneers who’ve done genuine research looking at evidence which should shape practices
Hi beats,
Well let me tell you. My consultant finally offered me an appointment to see her last week after two years. I’ve contacted my BC nurse with various queries over that time and she had done her best to reassure me, but it just wasn’t cutting it.
Went along expecting the consultant to at least have a look at me, check my lumps and bumps that type of thing but she didn’t lay a finger on me! Soon as I sat down I got the lecture, basically pull yourself together or words to that affect. She did suggest moving forward groups that type of thing but as far as my BC was concerned it’s perfectly obvious that she thinks she’s done and dusted with me! I hope she’s right!
My GP had sent me for a hip and chest x ray as I was in so much pain and was coughing for 4 months. They came back okay but I’m not convinced a basic x ray is adequate. The GP obviously heard my concerns and did his best.
I brought up LCIS and the fact I’d never had an MRI to check my remaining breast after mastectomy and her hackles were clearly rising. Apparently I don’t need one and it wouldn’t be seen anyway. I was told to put my phone down and get off Dr Google. I left within 10 minutes feeling like I’d had a rap on the knuckles and apologised for wasting her time. Got back to car and just burst into tears.
I couldn’t help thinking if the boot was on the other foot! I’m thankful for everything she did for me previously but her positivity in how tiny my cancer was seemed a bit hollow back then when the post op pathology confirmed it was bigger than she previously thought and definitely hadn’t been sucked out with my biopsy! I wish!
I’ve decided to save up and get a private MRI this year. I’ve given up! I’m in Cheshire.
All the best x
Hi Frances . Where are you in Cheshire ? I’ve just had my MRI, pre op , confirms small lobular in RB.
Mammogram didn’t pick up anything untoward but a very thorough radiographer found on ultrasound .
Can you have an annual MRI?
Just thinking of the radio active dye they put in 
.
I’m going to ask the radiographer on Thursday when he puts my biopsy marker in .
Hi klf,
I’m not sure I’m supposed to say but suffice to say it’s south Cheshire. Sorry to read you’re going through it, best of luck and at least they’ve found it!
My cancer was a low grade invasive ductal but when they find LCIS as an incidental finding at biopsy, as they did with me, it can suggest you are at much greater risk for further invasive lobular cancers. I only have annual mammograms post mastectomy and it worries me that lobular cancer doesn’t show up well or at all on mammograms.
They’re adamant they won’t let me have an MRI. 
. Best of luck with everything x
You should have a message , click on your icon , it’s in the list .
I am in Australia. I had very small Lobular diagnosed in 2020 and had lumpectomy and radiotherapy and am on AIs. My diagnosis was via 2y mammogram in public health system. Everyone has said it was an amazing pick up. Lucky me. My surgery was private health and my surgeon referred me for MRI to check other breast. It was clear. I see my surgeon privately twice a year and private mammogram/ultrasound. I asked and he has given me an MRI referral if I want to use it. I have not yet. I see an oncologist (through the public health system) - it was twice a year and is now once a year. I read as much as I can about Lobular breast cancer and belong to BCNA in Australia. I think my MRI was about Aus$500 so about 250 pounds. A lot cheaper than in UK. I feel more worried having read this thread than I did beforehand. I think I will take up that MRI.
I am so sorry that this has made you feel more anxious , that wasn’t my intention , in fact the opposite . Cliche I know , but I do believe when it comes to our health knowledge is power . The problem is when you’re in a healthcare system that refuses to accept the emerging evidence around monitoring & screening of lobular breast cancer .
You are lucky that your provider will give you an MRI , I hope you have it & it gives you extra reassurance .
I’m still battling with my NHS provider .
As an ex nurse I find it deeply depressing that my experience of McMillan nurses is a lack of advocacy & courage to really critic practice , instead they act as gate keepers & will always push you into to cheapest options .
All the best to you & let us posted
My experience is similar to most of you ladies here. My two tumours did not show on the mammogram, even though one of them could be clearly felt (and seen, once I knew it was there) I haven’t had an MRI done as the two tumours meant a mastectomy of right breast. They said the left was clear as per the ultra sound. I asked about MRI for the follow ups and was told that they now have a baseline to compare future mammos on. This is not sitting well with me and I think I will be biting the bullet and getting private MRIs in between the NHS checkups. I am just about to start chemo next week and I actually wish I had gotten a private MRI done a few months ago as I still worry that something has been missed in my left breast. Wondering if I should try to get one done really quickly before chemo starts. I wish they had just done it back at the beginning!
Thank you to everyone who has replied.
There is clearly a major issue in how we are monitored & screened.
We are all gong through this alone , often
Demonised for trying to get evidenced based care .
I will feed back how I get on , it feels like a battle which we really don’t need .
So glad for this thread & knowing I am not alone . I hope I will find strength to take this further at a more strategic level.
I’ve had my marker put in today for my WLE tomorrow .
I’m at a Spire hospital.
The radiologist , who also found the ILC at an NHS Hospital was struggling to find it in ultrasound today .
I double checked and it did NOT show on my mammogram .
It’s 15mm, supposedly .
He said that 15% of BC do not show on mammograms . I think 10/15% of BC are lobular ? Coincidence ?
I asked about follow ups . He said that MRI is best and I can ask on the NHS . He thinks my consultant agrees with this for lobular but I will check with him at my post op follow up appointment.
Did anybody see the article about AI checking mammos on the BBC Today ?
Hello. It’s been two months since your WlE was due. How are you doing? Hope you’re ok xxx
Hi Jaynie. I’ve recovered from my op and I’m starting 5 sessions of radio in Wednesday.
Thank you ! X