Diagnosed with invasive lobular breast cancer advice please

Ok i need to start thinking about the long game here. 
short time sh&t for long term gain.

you have inspired me to make some changes in my life……. Nothing can be harder than what you guys coped with. You are seriously my inspo!!

now I need to stop worrying about my blooming hair! 

Loved reading your story and you are an inspiration.  Sounds like you are a free spirit enjoying life and smaller new breasts are probably more comfortable too.  Keep going and enjoy traveling.

Thank you x

They told me when I got node results and it hadn't been mentioned before. In fact they kept saying it hadn't spread to lymph nodes so it was a huge shock. 

There's some amazing cancer inspiration on here, take what you can from them to make your journey easier as it's yours and still scary and emotional. 

Be kind to yourself xxx

ditto ange. All scans etc implied it was “just” a boob lump for me so a massive shock to realise it was on the move

but I’m really going to try and reframe it this morning having read a lot of stuff yesterday.

the odds are still good - yes the journey might be tougher than expected- but tbf a few weeks/ months ago none of us exorcised any of this. The aim is to get rid……eyes on the prize right?!

seems like ilc doesn’t always mean chemo because it’s typically hormone receptive so the hormone blockers etc are the absolute first must have……. I suppose the chemo comes in if the oncotype is high. So maybe the way to look at it as I’m pleased I’m getting the oncotype information?? So I can take action. Although obviously I’d rather not have had to get here for sure…..

You are truly inspirational.  I'm a really positive person but you're beyond awesome!

Thank you for your lovely comments.

Please keep me informed of your progress x

Dear c22 - your posts have caught my eye as I lurked in the shadows, reading and not posting till now, your experience so far sounds quite similar to mine. have just 'come out' and made myself a profile which I'll copy here - apologies for the length of it, my fault for leaving. it until I am well into this journey. Lovely to read the posts from a few other ladies on this chat XXX

ILC E+P+ He-

Hi Everyone - it's time for me to stop lurking in the shadows (reading but not posting!) and come out and say hello!

I am 62 (but like to think I'm super young-  ha!) , prided myself on being super healthy and fit...then, only just over a year after a clear mammogram, diagnosed with ILC left breast. This was April '24. Seemed at first lumpectomy was the way...then advised radiotherapy as well, then, whoops, two more tumours detected on MRI so mastectomy advised.

Was then reassured that at least with mastectomy you won't need radiotherapy or chemo, just Letrozole.

Apparently I was down as 'clinically node-negative'; MRi, PET and US all showed normal looking nodes. So I felt confident in the extra time needed to plan reconstruction. June 15th I had left mastectomy with DIEP flap reconstruction, symmetrising reduction on the other side and SNLB.

My surgeon is considered pretty hot stuff, extremely experienced, and definitely not the type to throw around false hope or sugar-coat. So I was blissfully happy, thinking I'm out of the woods. Surprise! Positive result from the node biopsy. 

Provisional plan now is radiotherapy ( 3 weeks 5 days a week) planned for August and Letrozole (already started), with Oncotype Dx pending to advise on whether chemo would also be beneficial. 

After my first oncologist appt last week, she ordered a new Ct, this time with contrast, to see if we can find out more about any other potential lymph involvement. Waiting for the result of that too, so chemo is back on the cards pending both OncoDX and CT.

My biggest problem now is that I have lost all confidence in 'what we can know' or be reassured of.

I am almost hoping for chemo as it would give me greater peace of mind.

To only having taken one node and for that to be positive makes me feel that i want to be treated as strongly lymph-positive as possible as we know know one 'out of one'

I know that radiotherapy is just as effective as ALND but after so many reassurances and for it to go this way has really dented my confidence - argh!!! Hope the oncologist can convince me of the reliability of any decision making post test results, or I may be badgering her for voluntary chemptherapy at this rate!!

This is turning into a book now, thanks for your patience, anyone who reads it, and look forward to participating more in future, hope I can be of help to anyone out there too! X

Welcome! And I’m going to write back a longer reply when I have a better moment

but just wanted to say - gosh - that’s a similar tale to mine…… I’m so so many ways.

im waiting on results of second lumpectomy , like you having been told how straightforward it was all going to be

possibily now facing masectmy and chemo and radio and ht……I mean how did I get here……

I know! Its a shock to think you're in one 'category', then find you're in another! I guess that what we dealt with in the very beginning, and this uncertainty continues doesn't it? I suppose we will learn eventually that nothing is ever certain. Like the lady with the camper van further back in the chat, I hope that some good will come out of this crazy experience X