Attention all Invasive Lobular Breast Cancer Ladies

I may be a little late to this party but better late than never!

I was also diagnosed with lobular 36mm ER+, PR+ HER- about a year ago.
Had a double mastectomy with immediate reconstruction (other breast for prevention due to strong family history) and now on monthly zoladex injections and Letrazole. I am also planning an oophorectomy early next year so won’t need to have the injections once that is done.

I did start on Exemestane but that eventually gave me carpal tunnel syndrome so I switched to Letrozole.

Been getting biphosphonates fusions every 6 months to prevent osteoporosis and today was my second one. I was told that my bloods showed the ca 1-53 marker was slightly up (last time was 20 and this time is 26). It has sent me into a wild panic as this is a distant recurrence marker.

Both oncologist and consultant told me they are not concerned at all and will just check my bloods again in a couple of months.
However, I feel like I have gone backwards a whole year and now stressing all over again :cry:

It begs the question; whether we will ever stop panicking over anything remotely sinister. @Katone i know exactly what you mean about worrying regarding recurrence as I feel the same. In fact, had quite a few scares already and all turned out to be nothing. We just need to soldier on!

Anyway all the best to you all and thank you for that lobular moon link. Going to check it out now.

Sending you all much love


Hi Carrott (not late at all - these topics remain relevant ad infinitum).

Your story is similar to mine in many ways - double mastectomy (strong family history) 11 mm invasive lobular in left breast ER+, PR+, HER2-, and mucinous in the right (concurrently, 16 months ago). As I am postmenopausal, I was only put on the aromatase inhibitor Anastrozole (following left chest radiotherapy) and given 6-monthly zoledronic acid (bisphosphonate) infusions. Like you, after the second one, I was told my calcium was slightly high but was not referred for it nor was any explanation given to me about what risk/s this poses. Are the infusions, in fact, just as likely to cause bone vulnerabilities as protect them? I’ve suspended the Anastrozole - debilitating hand joint pains the main reason. (All to be discussed with oncologist in a couple of weeks. Will also request several of the tumour marker blood tests on a regular basis as they CAN indicate early changes. But can merely signify other minor, temporary infections too. Only a concern if a continuing significant rise over a short period.)

I hate all medication. There’s ALWAYS a trade off, never the magic bullet. The impact the Anastrozole had was a wide range of issues caused by the oestrogen starvation. In combination, it all made me feel 20 years older. I rarely even resort to painkillers as I don’t want to become dependent, and anyway don’t like anything that dulls me. (Don’t drink much either!)
How long have you been on Letrozole and how are you getting on with it?
Regarding an oophorectomy, that too seems it can cause cognitive and cardiac problems. Sometimes I think maybe it’s better to take a chance on cancer than compromise so many other bodily functions. I never thought I’d say that at the outset.

Sorry to say that I think intermittant stressing is par for the course after cancer. There seems to be so much to be aware of and afraid of. Not necessarily full-on panic, but certainly a background anxiety a lot of the time. What I want to know is, what percentage of lobular ladies get away with just one incidence of it their whole lives with no recurrence or metastasis. A little ray of hope would be good to balance the picture!


Hi Misty,
I have been on Letrazole now for about 4 months (was on Exemestane before then).
I am finding it ok but if I don’t exercise for a few days, my body starts to get really stiff. It’s hard having to exercise so often just so my joints don’t cease up!

You’re right, our journey will always have these little scares along the way, hopefully we will get better at dealing with them.
I did read somewhere that 75% of lobular cancers do not return again but I cannot find it. From memory, I think it was from a reliable source too.

Sending best wishes


If you had the Oncotype test, it calculates your risk of future recurrence. I had a low Oncotype score (16) which meant no chemo, but a 15% risk of recurrence. Which kind of haunts me. (I needed to know everything, but not everyone does - I would only ask to see this stat if you’re comfortable knowing, and keep in mind that these are based on averages :slightly_smiling_face:).
However, as per your first post @MistyK , there is no accounting for IDC vs ILC in this test. I presume 75% of the cases they used to develop Oncotype were IDC.
And hello @Carrott - we have chatted elsewhere and it’s good to hear how you’re getting on!


Hi again Katone
Similar position as me - I scored 12% on Oncotype (bearing in mind this took into account 2 different, but concurrent, tumours, ILC AND mucinous breast cancers - scored 9 and 7 respectively). Low percentages are good but there is always going to be a risk. If you’re unlucky, you’re unlucky.
I, too, am the sort of person who wants to know everything! Just to try to make the best informed decisions which could make the difference between surviving long term or not. I even started looking at trial result papers (when trying to decide about adjuvant therapies - radiotherapy, medication etc) because I was blind-sided by the fact it was ME who had to decide what I did and didn’t want to take on! However, there was a limit to the terminology used that I understood and I kept going down rabbit holes. So many hours spent getting swamped with confusing, sometimes contradictory, information. Hard to ever find the definitive answer, because it is not yet a precise science. And, as you say, these are not ILC-specific statistics, so only a limited guideline.
The great benefit of this forum is that each of us can find people in similar circumstances from which to take a degree of comfort.


Thanks for responding Carrott.
That’s what I need to do, then, get moving more!
Regarding hopeful news, I’ll hang on to 75% for now!
I’m hoping the universe decides that as I was unlucky re developing lymphoedema, it will cut me some slack re recurrence/metastisis. (Winking emoji)
(Can someone tell me how to get these emojis to embed.)


Hi ladies ,

Its interesting and terrifying to real your stories. In was diagnosed with ILC and IDC with Pr & Er in my left breast. I only have my diagnosis 4 days so all very new. I did not have a lump as such, more or a think line of hard palpable mass. What’s worrying me is that I was in the breast clinic 6 years ago when I noticed a new crease in the bottom of by breast. The breast nurses dismissed it at the time and told me it was nothing, I did have a mammogram and showed nothing. I’m wondering could I have had the lobular cancer since then? And also if this caused the IDC ? Is it normal to have both types in one breast? I’m am going for MRI on Tuesday and am aware this could reveal more, in other breast or that original tumour bigger than thought. Really sounds like they are using a lot of guess work at the moment to treat lobular.


Hi all just found this thread. I was diagnosed with ILC in May 2022 after finding a lump in my right breast. I had a mammogram in June 2021 which was clear and even the mammogram in May 2022 after my GP referral was clear so I was one of the unlucky 20% whose cancer doesn’t show up on a mammogram. I had noticed the breasts had been different sizes for a few years but out that down to kids and breast feeding/aging etc, never knew it was an indicator of lobular breast cancer. Wish I had.
So after MRI I had multi focal tumours with node involvement which meant a mastectomy, node clearance, chemo & radiotherapy. After active treatment I started Letrozole in April 2023, had my first zoledronic acid infusion in May (which floored me worse than chemo) and started Abemaciclib in May 2023, which I have only just got under control with diarrhoea but I still get terrible stomach cramps and diarrhoea about 1/2 a week.
I have now though developed stage 1 lymphodoema in my arm so really cheesed off at that. I feel a complete wreck and I’m desperate to try and keep the lymphodoema under control. I guess at least it takes my mind off of recurrence. Hugs :hugs: to you all.


Sorry for late reply,
I had 4 EC session and one paclixatel chemotherapy, unfortunately I should have another 3 infusion of paclixatel or Taxol but chemotherapy damage my lungs with bad dry cough for 5 weeks and the oncologist stopped chemotherapy, he said is enough, now I am on steroids to treat the lungs pneumonitis, I will have the radiotherapy after,
Monday I will have the electrocardiogram then the following week Tuesday the scan to prepare for radiotherapy, probably 4-5 weeks, we will see.
The hormones therapy is Tamoxifen and Zoladex injection to induce my menopause, but I will start after radiotherapy if everything goes well. I am already in menopause induced by chemotherapy, I have hot flushes already but tolerable, neuropathy installed from the last chemotherapy infusion, and still have from 4 weeks ago even chemo stopped.
Hopefully you are doing well.
All my best with your treatment, big hug :hugs:

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My heart goes out to you, ‘tired’. (Also tired.)
My 2 different cancers didn’t show on annual mammos. Only found the one small lump on right and had instinct it was dodgy, not just a cyst. (That one was the rare mucinous variety.) Brilliant surgeon went searching via numerous tests in my other breast (dense with calcification) and finally found the ILC lurking there. Double mastectomy, axillary clearance, lymphoedema in hand and arm 6 weeks later (and that’s a really unlucky bummer, I feel most angry at fate about that) radiotherapy (late re NHS delays), Anastrozole (late through my own trepidation), stronger reaction to zoledronic acid than I expected (yes, floored me too for a good 2 weeks and seemed to immediately escalate all the hormone therapy side effects). Stopped Anastrozole for an 8-week break sanctioned by oncologist while I re-weigh up (for the 100th time) the pros, cons and risk percentages. Along with occasional wearing of compression garments (not nearly as often as supposed to), I have invested £1,000 in a pneumatic draining arm sleeve which I use every evening in front of the telly; seems to keep it to a minimum. (Machine is by Huntleigh, the ‘Hydroven12’ model … but take advice from lymph. therapist!) I do notice if I skip it for more than a day.
Hope some of this comforts / helps. Good luck.


Hope you are feeling better now MistyK.
Thanks for the tip for the arm drain, I will look that up. I’ve been working on my arm every day and it does feel better so that’s something.
Honestly cancer is the gift that keeps on giving isn’t it :smile:



I’ve just come across your thread! I was diagnosed with ILC in June and had a right side masectomy with lymph node clearance. I’m currently having chemo and will be halfway tomorrow!
I feel like getting cancer in the first place is a bummer but the lobular is even more of a bummer and I feel like it’s a miracle I even found it! It’s nice to see a thread for lobular ladies.
Hope you are all doing well x


Hi - I’ve only just been diagnosed with LBC - and didn’t even know there was different breast cancers - ignorance was bliss! Still on a very steep learning curve now so thanks for posting and I’ll get reading.


Morning, I’ve also been diagnosed with ILBC and I’m having surgery to remove my left breast in the morning ( hence the very early reply!)
I too didn’t realise there were different types of BC, it really is a learning curve isn’t it?
Just wishing you all the very best on your journey. Hope the New Year is better for us all.
Take good care of yourself.


Good luck for today, wishing you a speedy recovery x x


You’ll be ‘done’ by now - hope it went really smoothly for you. We’ve all had to find a new level of courage and you’ve just joined the club.
You’ll be groggy and still shell-shocked about the whole diagnosis for a while and I wish you all the best on the road back to normality - hope you’ve got your hiking boots !
When you’re up to it, you might find the following website full of useful information about lobular cancer (included in my first post on this thread but repeating here for convenience).
The founder Susan Michaelis is amazing, pushing awareness and a research funding drive. She managed to get MPs to convene for a drop-in at Westminster and much much more. The film on the website called ‘My journey with Lobular’ (1 hour long) is particularly enlightening. Just something you might be interested in a little later on.
Meanwhile, Good Luck for your recovery.


Thank you all so much. All went well, should be heading home about 7p.m. Think I’m still on an anaesthetic’high’! Fully expecting to feel a bit s…t later on, but for the moment that’s another hurdle over.
I wish you all love, luck and my very best wishes :heart::heart:x


Hope all went well jecs333 and that you are recovering well. Sending :heart: xxx


Good luck - hope all went well xx

Will you still be expected to cook the Christmas Dinner now lol?

All the best for 2024 xx


All went very well and I’m feeling surprisingly fine this morning, had a good nights sleep, although very conscious of the drain.
I’m well aware that I may still be on an anaesthetic “high”, so just taking each day at a time and hoping for good news at my appointment in 4 weeks​:crossed_fingers::crossed_fingers:
Not doing anything, as instructed, going to watch lots of t.v, read books and listen to the radio, no cooking for me on Christmas Day!
Thanks so much for your message.
Love to all xxxx