I was diagnosed with ILC in June 2022 in left breast. (Also invasive mucinous breast cancer in right breast, which is the lump I originally referred myself for but about which there was less concern.)
Strong family history, so opted for double mastectomy. This was followed by Oncotype DX scoring which was low for both so no chemo. Then, as one node was involved (extracapsular at that, and NOT one of the two sentinel nodes … that’s lobular for you), I opted for axillary clearance rather than zapping blind with radiotherapy. No further lymph node involvement found. (Depressingly, I then developed lymphoedema within 6 weeks, as it turned out unnecessarily but one is not to know - there could have been several more nodes affected for all I knew.) I did have left chest wall radiotherapy.
Anyway that’s the back story. What I am really curious about is why, in most threads, the specific type of breast cancer is not mentioned.
Invasive Lobular Cancer is a specific subtype which is biologically, presents and grows quite differently from the most common type, ductal. There is no targeted treatment designed to attack lobular cells more effectively, so we are just treated with the same drugs as for ductal cancer. (Check out www.lobularmoonshot.org for lots of information and research funding activities.)
I am keen to hear from others out there who’ve had the same and who might enlighten me further about what treatments they had / are currently on and how they are faring. Thank you in advance, fellow lobular ladies.
Hi , I too have Invasive Lobular cancer with Sentinel Lymph node involvement. No clearance , grade 3 , stage 3. I did have chemo EC and Docitaxal and then 15 fractions of radiotherapy. I am ER 8 and,PR7 positive and HER2 negative. Due to this i was given targeted treatment abemaciclib and hormone therapy letrozole to hopefully prevent a reoccurance. Meds give me really bad chronic fatique (i am on lowest dose of Abemaciclib) but im plodding on.
Feel us Lobular girls get lost in the DCIS world and we have to hope the same treatment is successful on us. Hoping for more succesful research 
As ILC accounts for 15% of all breast cancers, there are quite a few of us out there!
I was the typical ER/PR+ HER2- grade 2. I was stage 2 with 3 nodes involved (one macromets and extracapsular spread, as well as lymphovascular invasion). Wasn’t give a choice of aux clearance, just given radiotherapy. I understand this reduces the risk of lymphodoema, but it does mean I will never know if there were more nodes involved - and hence would have fallen into the ‘chemo’ category. Funny how different hospitals have different treatment guidelines.
I share the concern that treatment is the same as IDC, even though it is a distinct disease. As a scientist, this makes absolutely no sense, but this is how medicine evolves. Something good is that surgery will always be the main tool, regardless of subtype, which brings some comfort to how primary disease is managed.
More appropriate screening methods and new drugs to prevent/treat mets are what are desperately needed. I feel lucky mine was picked up by mammogram, but very unsettled about my future as it often evades detection by current methods and so recurrence is harder to detect, plus the fact that the majority of drugs have been designed for IDC. Most trials and population studies do not stratify by IDC/ILC subtype. Yet the information is there on our pathology reports - so the details to support such studies is readily available.
A great resource is https://lobularbreastcancer.org/, where all these things are recognised. They have collated info specific to ILC including latest trials etc. Hope that helps.
Dear Katone
What a brilliant reply - thank you.
It’s just reassuring to know that there IS someone else on this forum who understands this issue in depth. Can’t get much better than a scientist !
Most of what you mention I have learnt by becoming involved with a woman who had advancing bone mets from ILC. She is spearheading an awareness campaign and fund-raising drive so that the Institute of Cancer Research in London can begin a project specifically looking at the different biology and behaviour of lobular cancer in order to develop a treatment to specifically target its particular weaknesses. They have access to all the data and lab equipment required, they just need the personnel and lab costs to conduct the research and trials. £20 million is required and the pot is just starting up. You may be interested to visit her website www.lobularmoonshot.org - they are currently making representations to the government for funding.
We need MRI screening as the gold standard. Annual mammos and some ultrasounds missed mine for, probably, 2-3 years. I had an amazingly diligent surgeon who went hunting for trouble off the back of a self referred lump (which was the mucinous breast cancer in the opposite breast) ! After various types of scans and repeated biopsies, the lobular was finally revealed. So grateful for his persistence. My 2 dyed sentinel nodes were clear but again, his close observation during the double mastectomy surgery spotted the suspect node further away which proved to have extracapsular involvement, hence my choice to have the (as it turned out, impactful and unnecessary) axillary clearance. In advance of my meeting with oncologist at end of this month to discuss next steps and concerns I have, I’ve just stopped Anastrozole after 10 months because of sleep disturbance, lethargy and bone pain, particularly 2 months worth of debilitating levels in my dominant right hand. The side effects of this drug get increasingly worse over time - something that was not explained properly to me at the outset.
Anyway, thank you again for your detailed reply.
Hi Teresa_Jones
Thanks for your response. Isn’t it so frustrating that so few people know of the major difference between ILC and DCIS/invasive? Not one of the many medical personnel with whom I came into contact even commented on the subtype of breast cancer I had. I only knew its name from the path lab reports I requested.
I hope you can see my reply to Katone as it may be of interest to you, especially the web link. If not, let me know.
Wishing both of you all the best through your treatment / recovery / post-cancer life.
ILC here, perhaps with it often being occult, its tendency to recur after many years of dormancy and the lack of specific research and treatment the medical professionals don’t take too many pains to highlight to patients they have lobular vs ductal. Not sure I would!
For info 55mm tumour removed, along with one breast and lymph node clearance as 7/15 positive. Chemo & radiotherapy, oopherectomy. 3yrs Bisphosphonates, 10 yrs hormone treatment. Aromatase Inhibitors recommended but unable to tolerate, so on Tamoxifen.
Thanks for your contribution, Pyewacket. Everyone’s story so valuable in painting a more informative picture. Did you elect to have the oopherectomy as a safeguard, or were you advised to? Were you on Anastrozole? Which side effects did you find intolerable yourself? Thanks in advance.
Morning Misty. The oopherectomy was instead of the Goserelin injections, I was 52 by that point so didn’t see have in issue with having it done, especially with ILC liking to make a return to the ovaries.
I tried both letrozole and then exemestane, various physical symptoms but the red line for me was the depressive symptoms. Tried increasing the dose of the venlafaxine that I take which is the first anti depressant that’s worked for me to no avail. So I went back to Tamoxifen which I knew I tolerated well, as I was on it from diagnosis for around 9 months as my treatment was delayed during Covid.
Thanks for answering my questions. Hmmm, oopherectomy: another topic to discuss with the oncologist !
HER negative, invasive lobular here , 20 lymph nodes removed 9 with cancer cells, mastectomy first, chemotherapy, radiotherapy and after hormonal therapy estrogen to stop, and they will induce my menopause.
I am in Ireland, so different places different treatments, I have a friend with IL too and she had chemotherapy first and surgery after.
I don’t know if the oncology team have a curriculum or guidelines for the treatment, I am overwhelmed by the situation and I want the best treatment. I hope to receive it .
Good luck with your treatment 
Big hug to everyone
Thank you for adding your voice and story, Camy.
I guess it depends on the size / extent of tumours that determines whether they need zapping with chemo asap, and then get to the surgery after. How long ago did you have the radiotherapy and how did that go for you? Which hormone therapy are you on? Keep strong, but be kind to yourself too.
@MistyK I’m so glad you started this thread, it’s incredibly helpful to hear other ILC specific stories.
I’m a year down the line, and find I am spending an unhealthy amount of time thinking about recurrence. I understand that lobular is known for late recurrence (10 yrs plus), but I’m curious to know whether anyone experienced this earlier?
I often wish breastcancernow had a topic dedicated to this subtype. As well as a place of great support for patients, what a wealthy resource this could be for research.
Look forward to more stories xx
Oh no recovery really, it was keyhole surgery so there was no pain or problems at all.
Hi dear, 5 cm, removed in 6 July, I am on chemotherapy from September I will have radiotherapy from January 2024, not done yet with the treatment. I can’t tell you about hormones treatment as I don’t know.
I am taking day by day.
Big hug 
Hi, I am in both camps as I had one lobular (in one breast( and one ductal (in the other) removed by lumpectomy in May this year. Sentinel nodes not affected, one week radiotherapy on each breast separately. Prescribed 5 years on Letrozole. Been taking it since April, not really any side effects since. Neither of my cancers were seen on mammogram due to dense breast, only MRI. The lobular one was the one I went to the doc about as I felt a lump. Both types were grade 1 or 2 and about 7mm. Would be good to have a lobular section on the forum too.
Hi i had invasive lobular, invasive ductal , and low grade carcinoma in my rightbreast. Mine was er and pr positive and her2+. I had doxetaxel, carboplatin, herceptin and perjeta every 3 weeks for 6 months. I then had a mastectomy, with axillary node clearance. Chemo had no effect on my lobular i had 15/25 nodes removed after chemo. Then had three weeks of radiotherapy from my collarbone to under my breast and my under arm. I was on tamoxifen, then put on letrozole. Got my 5 year check soon, and will be on letrozole for 10 years. I now have asthma, miscropic colitis. Had an implant, which was removed after 9 months due to a infection . I have decided to stay flat, on my right. Not pretty after my infection, i can have surgery but i have decided against it. I feel ok apart from aches, but i have painkillers if i feel really bad. If i have any pain, i go straight to the doctors and dont take no for an answer.
Hi again Katone
The lady who started the Moon Shot Project was first diagnosed with ILC in 2012, then again in 2016 and yet again in 2021 when it had metastisized to her bones and was stage 4. So that’s at intervals of 4 years and another 5 years. I believe 3 / 4 years and 8 / 9 years are common intervals for lobular. Of course, this doesn’t mean to say all of us will follow the same unfortunate path as her. I’m living on the hope that some of us only get it once. I’d just like to know what the stats are for single-incidence cases. Like you, a little over a year down the line and I’m hypervigilant and super sensitive to every twinge, itch, ache. Currently trying to press for an MRI and regular tumour marker blood tests. Need to know from my oncologist appointment later this month by what percentage hormone therapy improves outcome. I’m taking a break from aromatase inhibitor after 10 months because of chronic and impactful bone/joint pain. I don’t know whether, in time, this will disappear or whether the effect is permanent … or in fact if it is unconnected arthritis, or whether the meds brought that on. SO many questions that need answers. Also, there seems to be endless permutations of approaches, treatments and different drugs people have been prescribed. It all feels rather random and not at all reassuring. (Can’t work out how to insert emojis.)
Hi. Thanks for starting this thread @MistyK! I was diagnosed in July with invasive lobular after regular mammogram. Showed as 10mm but it was actually 35mm. I hadn’t had a check for 6 yrs due to Covid. Suspect it may have been growing for a while and might not have been picked up in 2020 anyway.
Had WLE & therapeutic mammoplasty in Sept & starting 5 days radiotherapy on Friday.
When I asked my surgeon (who I loved!) whether yearly mammograms would be enough follow-up, she said yes in my case as my breasts are not dense. Which does make sense. But I know I will find it hard to be reassured by all-clear mammograms in the future.
I was so glad to find the www.lobularbreastcancer.org.uk website which, among other things, has this great little video which I’ve sent to all my women friends: What is Lobular | Lobular Breast Cancer UK
And this longer 1hr one on www.lobularmoonshot.org is very good to educate friends:
Lobular Breast Cancer Documentary: "My Journey With Lobular" on Vimeo
Women all need to know it’s not always a lump!
Hi greengoude
I’m so glad you found this thread and the link to the Lobular Moon Shot Project useful. Just doing my bit to get the word out there and to encourage people to donate to the cause through their website, either via Susan Michaelis’s Just Giving page or direct to the Institute of Cancer Research (details on the same website) for lobular-specific research and targeted therapies.
Approaches are now being made to government and the rallying call is to alert your local MP. Again, refer to the Lobular Moon Shot Project for more details if you’re interested but you will need to focus on yourself right now.
I wish you the best of luck with your treatment and recovery.