Attention all Invasive Lobular Breast Cancer Ladies

Thank you so much for this
Yes MRI screening should be gold standard.

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Hello ladies,

Hope all’s going well with treatment and plans.

Klf hope your MRI went well and you’ve a treatment plan coming together now.

And Sammie, we followed a similar timeline for our mastectomies and recoveries - sorry to see you’ve had an infection, hope that’s all done and sorted out now and you’re back on track with healing.

Best wishes to all xx

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Hi Lobular ladies, I have been lurking on this site since my diagnosis in June 2023 (stage 3 - at surgery 14cm and 4 lymph nodes). I had chemo then surgery (masectomy) and am now waiting for radiation. It’s so helpful hearing everyone’s stories to not feel alone . Am struggling at the moment with a few things though and wondered if anyone else had similar. I watched the lobular moon shot video and am now pretty concerned that if a scan isn’t an MRI then it won’t detect spread. I had a clear CT PET scan post surgery and was elated but have got myself into an anxious mess again wondering if it’s pointless. I find when I speak to the oncologists nothing ever seems positive so I’m second guessing everything that I’m told.

I also have always been someone who struggles to put on weight and with the anxiety it just drops off and spirals my thoughts again. Does anyone have tips on how to put weight on? Had radiotherapy planning appointment today and not being very fleshy was so uncomfortable.
Thank you

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Thanks for your comments on this thread, very interesting.

I’ve had a similar experience to many of you after a diagnosis via screening in January. The full extent of it wasn’t clear until after surgery - at least 100mm extensive multifocal grade 2 ILC, with lymphovascular invasion, one sentinel node with focal extracapsular spread, ER8, HER2 negative. I had a mastectomy with immediate reconstruction (implant) 5 weeks ago.

Mammogram, US and MRI indicated the nodes were clear. The surgeon said it was possible the ILC was missed at my last screening 2 years ago. Monitoring will be annual MRI scans but only for 5 years. I believe the most likely time for reoccurrence is likely to be 10-20 years so would like scans every year ongoing.

I was intrigued by the surgeon’s phrase ‘largely radio occult’ and have been researching ILC which has never been specifically mentioned as a distinct or important subtype to me by my care team.

Here is a useful summary video from the 2023 International ILC Symposium (with is on the LBCA website) talking about the latest developments re ILC. The section from Matt Covington, MD, is really interesting if you want to know more about the issues surrounding poor scan detection of ILC, particularly with dense breasts like me (go to 54.30 mins into the video)

It helps to know this so you can ask for right scan technologies in future.

I’m now in the ‘high risk’ category, so start dose dense chemo in April, followed by RT, then ovarian suppression, Exemestane, Zoledronic acid and Abemaciclib. I’m very active and am dreading the thought of drug side-effects wiping me out for years, but aged 53 I guess I have to throw everything at it.

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@limehouse yes I’ll be having all of that too. I’m 49.
You seem to have a lot of detail from your surgical team, I just had a rushed call with the basic details, just feel like I’m hanging all the time.

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I’ve realised I haven’t checked in since my MRI . It confirmed the original tumour in RB . When the radiographer rang with results , he mentioned areas in LB “but we’ll just ignore those “.
I saw surgeon the next day and he checked the MRI report . They are confident that they are cysts and fibros.
They were on my 2 previous mammos going back to 2019.
I had lumpectomy and SNB on Friday , I will get my pathology results on 10th April .
All I know is ER+, HER-.
Size waiting TBC as 15mm , as well as lymph involvement ,MRI said clear .
When the radiographer put my marker in, he struggled to find the ILC . He said it didn’t show on the mammo but he thinks my consultant recommends MRI for lobular ladies .
I will check when I see him next week.

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Sorry to hear you’re going through it too. They should really be recommending MRI with lobular.

@Shots - I have the NHS app ‘My Chart’ and can see all the letters (incl test results, appointments etc) from the surgical team to my GP, which is where I have got the details. You can also access any letters from the hospital team to your GP if you have online access to your GP record.

The focus from the screening and surgical teams has always been on the fact the cancer is ER+ and HER2 -ve - and therefore treatable, never focussing on ILC as a distinct subtype with its own particular recurrence risks. It’s only by researching all the terminology and abbreviations used in the diagnosis in the surgeon’s letters myself that I’ve got a much better understanding of the risks of ILC. Glad I have researched it, but it leaves me feeling flat.

I’ve got the impression at each stage so far that no-one really likes delivering the bad news. They tell you the minimum and hint at possibilities, give you a leaflet and kick it down the road. I have then got the shock of more bad news at every appointment when those possibilities they hinted at manifest themselves!

I would rather have been told up front that I have ILC which is sneaky, difficult to detect and could be much bigger than the scans are showing!

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@limehouse yes totally understand how you feel with the info we get given. I very much look at the long term survivor stories or even just those 3years down the line for positive input.

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Hi I was diagnosed with Invasive Lobular BC after I referred myself due to a lump in my right breast Nov 23 - this was cyst which was drained but my consultant was suspicious about an ATypical shade on my left breast mammogram- nothing showed up on ultrasound do I had a core biopsy and discovered initially 15 mm invasive lobular bc. On MRI scan it was 19mm and after the initial WLE (as recommended) 20mm, I had 5 lymph nodes removed 3 had cancer cells 2 clear. Had a second WLE and lymph node clearance Dec 23 - lymph nodes clear but no clear margins and some foli found. Now having chemotherapy - just had 3 EC and will have 3 Docetaxal starting 5/4/24 - then mastectomy planned and radiotherapy and then hormone tablets, bisulphate tabulates and another tablet I can’t quite remember. I’ve struggled to find good info so appreciate the links and any guidance.

Hi Ged , welcome . You’ve had a busy few months :cry:.
I had lumpectomy and SNB for 15mm ILC 10 days ago .
Results will be in 10th April, so I guess I will know then whether I had clear margins /lymph involvement .
I hope the chemo
Isn’t too bad x

Thank you - Sending you lots of positivity- chemo is/ has been ok - but I’ve been grateful for all the advice and support from others so happy to give back - without these forums I’d have been lost - good luck for 10 April

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Was very interested to read this. My lobular tumour was not visible at all on my mammogram from 2022 (nor the one immediately before my mastectomy op last December) so the offer of an annual mammogram is not reassuring. A fellow patient I met during treatment suggested asking for an annual ultrasound instead.
I had a pioneering treatment where the plastic surgeon joined my lymph system into the vein in my upper arm, to prevent lymphoedema. No oedema signs so far 3 months post op so all fingers are crossed. Surgeon’s name is Amer Hussain and he works in Leeds NHS.

Thank you for your post, badger81.

Very interesting to hear when the new innovations in the world of cancer/lymphoedema treatment are actually being offered. Sadly, too late for me; I developed arm/hand lymphoedema just 6 weeks post axillary clearance. I am keeping my fingers tightly crossed for you; it all sounds very promising.

I have been turned down twice so far (I’ll keep trying) for an MRI of my chest in the area of my ILC tumour. I had a double mastectomy (a different BC in the other breast! and strong fam. hist.) but developed an aching rib. Yes, it could be radiotherapy damage, but I just want my concern over possible bone mets ruled out at this stage at this site. Too much to ask, apparently.

Mine wasn’t visible on a mammo either . It was found on ultrasound by a thorough radiologist. I knew there was a lump inside because the GP had found it .
They struggled to find it on ultrasound when they put my marker in for surgery .

Hi bee2
Recovering well bit lost at times infection gone and trying to get stronger but feel it takes time I’m back working 6.5 days light duties instead of full on 8 hour days when I’ve finished at end of the day I sleep for a couple of hours I’m exhausted all the time tamoxifen ok hot and cold flushes are a nitemare but manageable
How are you doing ? Xx