Hello all you lovely supportive ladies out there - Just reading these forums over the past couple of months has done me good, so now I guess it's time to introducve myself - I hope i can offer support to someone out there too.
The below 'saga' I have put in my bio but just copying here as an intro! X
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
Hi riversidelady welcome to the forum. It sounds like you have been through the mill trying to get answers and confirmed diagnostics. I don't have experience of what is happening for you but I'm sure one of the lovely folks on here will be along soon and be able to offer some thoughts and advice . Best wishes for now. Xxx
gail
