Thank you so much for this
Yes MRI screening should be gold standard.
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Hello ladies,
Hope allās going well with treatment and plans.
Klf hope your MRI went well and youāve a treatment plan coming together now.
And Sammie, we followed a similar timeline for our mastectomies and recoveries - sorry to see youāve had an infection, hope thatās all done and sorted out now and youāre 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. Itās so helpful hearing everyoneās 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 isnāt an MRI then it wonāt 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 itās pointless. I find when I speak to the oncologists nothing ever seems positive so Iām second guessing everything that Iām 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.
Iāve had a similar experience to many of you after a diagnosis via screening in January. The full extent of it wasnāt 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 surgeonās phrase ālargely radio occultā 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.
Iām now in the āhigh riskā category, so start dose dense chemo in April, followed by RT, then ovarian suppression, Exemestane, Zoledronic acid and Abemaciclib. Iām 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 Iāll be having all of that too. Iām 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 Iām hanging all the time.
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Iāve realised I havenāt checked in since my MRI . It confirmed the original tumour in RB . When the radiographer rang with results , he mentioned areas in LB ābut weāll just ignore those ā.
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 didnāt 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 youāre going through it too. They should really be recommending MRI with lobular.
@Shots - I have the NHS app āMy Chartā 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. Itās only by researching all the terminology and abbreviations used in the diagnosis in the surgeonās letters myself that Iāve got a much better understanding of the risks of ILC. Glad I have researched it, but it leaves me feeling flat.
Iāve 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 canāt quite remember. Iāve struggled to find good info so appreciate the links and any guidance.
Hi Ged , welcome . Youāve had a busy few months 
.
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
Isnāt too bad x
Thank you - Sending you lots of positivity- chemo is/ has been ok - but Iāve been grateful for all the advice and support from others so happy to give back - without these forums Iād 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. Surgeonās name is Amer Hussain and he works in Leeds NHS.
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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 (Iāll 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.
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Mine wasnāt 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 .
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Hi bee2
Recovering well bit lost at times infection gone and trying to get stronger but feel it takes time Iām back working 6.5 days light duties instead of full on 8 hour days when Iāve finished at end of the day I sleep for a couple of hours Iām exhausted all the time tamoxifen ok hot and cold flushes are a nitemare but manageable
How are you doing ? Xx
Hi ngt,
How are you doing? Do you mind if I ask what you decided to do please?
I am looking at options and it is very overwhelming - I wanted a simple implant at the time of my single mastectomy but was told NO as i may need radiotherapy - BUT now like you I HATE the one sided boob look - but not sure if I want the tummy scar either - At the very least I want my remaining breast made a lot smaller but not sure what to do reallyā¦
Hi clare81 I too noticed a slight crease/lump at the bottom of my right breast several years ago (canāt remember exactly how long but it was well before COVID) and was referred to a breast surgeon in Bradford who just looked at my breast for 10 seconds, said it was age-related changes, nothing to worry about and sent me away without further investigation.
In November 2023 I was diagnosed with lobular cancer in the same breast with a 39mm irregular lump invisible on the mammogram because of dense breast tissue. 4 lymph nodes were positive so I had a skin sparing mastectomy, axillary node clearance of 29 nodes and immediate DIEP flap reconstruction and anamostosis to connect my lymph system to my vein in my upper arm to prevent lymphoedema. A monster operation! Had 15 sessions of RT and now on Letrozole for 10 years and ibandronic acid for 3 years.
To this day I have no idea if the lump was there at the time of the first referralā¦onward and upward x
Thanks so much @MistyK for starting this thread, absolutely invaluable personal insights and links to expert opinions.
I feel so bloody lucky that my two ILC`s in my left breast were found so early - stage 2 11mm and 6mm( 2 ER + HER2 - )
I found a hard pea sized lump initially diagnosed on biopsy as IDC , but following single mastectomy diagnosed as ILC .
Like many others , mine was not picked up on mammograms. It took lot of persistence between myself and very conscientious ultrasound operator to find and biopsy my 1st tumour, and it was only MRI that detected the 2nd tumour.
So whilst I appreciate Iām so bloody lucky that mine was found before any lymph node spread, meaning Iām just on Tamoxifen for now, Iām terrified of recurrence, and cannot see any point in annual mammograms when they donāt seem to be able to find lobular cancer, even when we know itās there!
I went for an immediate reconstruction ( 3 weeks ago) because I didnāt want to be lopsided but really not sure Iāve made right decision, absolutely hate the hard uncomfortable implant. I have a 14 year old cosmetic silicone implant in my right breast which is so soft and natural looking.
Thinking about having both removed if doesnāt improve.
Thanks again for the brilliant links, lots of homework for me, to keep vigilant for the future!
Hi Caron
You are very very welcome. Iām glad itās helpful.
I decided to āgo flatā as the least complicated and thorough option, just to get as much breast tissue erradicated as possible and to avoid further aggro re breast issues.
I had one node found to be involved and it was with āextracapsular spreadā which means I will always have the worry that there are escaped cancer cells, especially as I ditched the hormone therapy because it impacted my life to an unacceptable degree. Hard choices.
The very best of luck with your decisions. x
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@twinkletits Sorry for not replying sooner, just noticed this. I opted for immediate diep reconstruction. I think my NHS trust seems to work differently in that they will still do an immediate diep reconstruction even if radiotherapy is on the cards (although I think I will avoid radiotherapy due to the mastectomy with clear margins) The scar on the tummy healed really well. It is still very red however but I am sure it will fade and has given me the excuse to buy some lovely new high waist bikinis for holidays this year. My reconstructed boob is feeling more natural all the time (op was 1st Feb 24) and I am really happy with it, even with no nipple. I am quite small breasted so there was no need for any work on my other side. I know one other person who had the same as me (immediate recon but she also needed a reduction of the other side, she is delighted with the results of her surgery) Recovery was not too bad either, first week and a half was quite tough but every day after that I felt a big difference in what I could do.
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