I would like to hear stories from those who have had invasive lobular breast cancer recurrence:
Primary cancer details (grade, stage, hormone status, nodes, LVI)
Timing after first diagnosis
Symptoms
How it was diagnosed (imaging, bloods etc)
Thanks 
Hello. I’m sure there’s plenty of us here that have recurrence of invasive lobular BC. I first had BC in 2009. 2 years ago it appeared around my bladder. I’m now on a clinical trial which is keeping it stable. I could write a huge reply with the details you’ve asked you but it’s not clear why you want this information.
Let us know what it is that’s worrying you and we’ll support, help and advise as best we can x
Thanks @NJB. And sorry, of course I should have explained why I’m asking.
I’m only 1.5 yrs since primary diagnosis and really struggling with the fear of recurrence. I’ve bothered my GP with a few symptom concerns over past few months and feel like they now look at me as paranoid, which then escalates my fear of something being missed. I’ve reached out with this question because if I have a better understanding of what to look out for, when, and whether my own primary puts me a higher risk, then I will manage my emotions more proportionately.
I know there is recurrence advice online, but most is ductal specific, and also it’s not as useful as actual patient stories.
(I’ve mentioned elsewhere that a dedicated breastcancernow forum topic for lobular would be really helpful 
)
I completely understand your worry. But I’m not sure that there’s anything in particular you can look out for.
My initial diagnosis was in 2009. The first few years after finishing treatment I was also paranoid about everything and had a few scans which put my mind at rest. Over time I learnt to live my life, although recurrence was always in the back of my mind. 2 years ago (13 years since initially having BC) I had strange symptoms in my bladder. A urologist kept asking about my BC history… I thought he was mad! Turns out that the original BC cells had appeared around my bladder. Of course I was terrified but tests show that it’s nowhere else, just 3 small tumors around my bladder. I’m now on a Clinical Trial which is keeping the cancer stable. I have learnt to live with cancer and can continue with my normal life.
What I’m trying to say is that none of us know what’s ahead. Be vigilant and aware of your body but don’t let it stop you from living a good life.
There are amazing treatments out there, new ones all the time. I hope the drug trial I’m on goes on to improve lives in the future. X
Hello again, Katone - we’ve communicated before.
I’m so glad you posted this question as I’m in a similar boat. My primary diagnosis was 20 months ago. Been through double mastectomy, axillary clearance, radiotherapy and have now given up on Anastrozole and bisphosphonates. The drugs scared me as much as the cancer and the side effects were becoming debilitating but I’m wondering if my choice will come back to bite me. Just last night I was thinking to myself “How can I shuck off this constant background dread that it’s going to come back for me, or that one rogue cancer cell got away and has set up home somewhere else?”
I have had some concerns investigated by CT scan and NM bone scan which have not revealed anything wrong, but was refused MRI (twice) of tumour site where rib can be very tender.
In advance of stopping all drugs, I tried to have more in-depth scientific conversations with 2 oncologists (one private, one NHS), neither of whom were willing to engage in a full and frank, respectful discussion with me. I wanted to know more about how all these drugs actually worked, biologically/mechanically, and how they specifically interfered with normal service around the rest of my body to cause the multitude of side effects. I also wanted a more accurate assessment of my risk according to my specific pathology and personal treatment path, and to know if I’d interpreted the very general stats correctly. This was the only way I would have made a fully informed decision. As it is, I’ve taken a leap into the frightening unknown and am trying to push the fear behind me to get on with a normal life while I can. Meanwhile every twinge, ache and itch is cause for concern.
I know where you’re coming from, if it’s of any comfort at all. Hope we’re both lucky ! x
Hi Katone,
We have met before on another thread. I feel exactly the same - always in fear. I am actually considering doing CBT (cognitive Behavioural therapy). I am hoping that can help.
Last week, I went for an ovarian scan which was standard procedure ahead of my oophorectomy next week.
The doctor was frowning during the scan and he took ages (but I had read it was a quick scan).
During this time; I had convinced myself he has seen tumours down there, it’s all over my ovaries, stomach etc etc
Apparently he couldn’t find one of the ovaries and that’s classed as normal so nothing sinister.
However; it made me realised that I am very scarred and that can’t be healthy.
Has anyone else considered getting any therapy or had therapy?
Carrott xx
Hi all, in case this is helpful, we have this information page about invasive lobular breast cancer: Invasive lobular breast cancer | Breast Cancer Now
Hi,
I was diagnosed in 2021 with a mixed carcinoma, 50% idc 50% ilc. I was unable to have rad booster as it was too close to my heart and couldn’t tolerate tamoxifen. I too have fears in the back of my mind of recurrent bc mainly because mammogram has never shown anything suspicious, only the idc was seen on ultrasound and mri.
It is very hard to have a informed discussion in follow-up appointments and feel that I’m treated as paranoid.
Last year I felt an area close to the previous bc that didn’t feel right, US only showed post surgical changes. This area has become more obvious and my gp refered me back to the clinic. The consultant was extremely flustered marked the wrong area and sent me for a mammogram and ultrasound. As before imaging only showed post surgical changes. I tried to discuss with them that US only showed 50% of the tumour previously but she said she would write to my gp. My gp has ask for it to be reassessed which they agreed but have now cancelled my appointment with a new appointment in November.
Whilst dealing with this frustrating situation, I am suffering with terrible back and hip problems. Xray has revealed several issues and i am now awaiting an mri report to reveal the cause. The consultant i had previously seen didn’t seem concerned about the back pain at all but i cant help wonder whether its linked.
I have resorted to seeing my surgeon privately tomorrow to seek his opinion as he has been the only professional that has treated me with any intelligence.
There is a lobular website that has a downloadable template letter, requesting annual mri instead of mammogram for previous ilc, whether they listen or not…
I think its normal to be concerned about recurrent bc but these fears aren’t helped by many professionals not listening.
Hi rnettle
So … a few similarities in our experiences. Please do report back to me after you’ve seen your consultant.
I’m a bit confused - have you managed to get an MRI done already? Was that because you badgered them with the lobular website letter template (which I did do)? Can I ask if you’re in the UK, and if so, which area?
Or was the MRI for your back problems, not specifically looking for breast cancer?
Wishing you good luck and a clear head for tomorrow ! I’ll be thinking of you. 