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May 31, 2013 09:18PM
nk - I was dx'd right outta the box with ILC STAGE IV, METS TO SPINE, RIBS, NODES. I had mammo every year...religiously. Sept 2010...then in late Jan 2011....felt a hardness (not lump) just hard area...like 1"x1/2" just to the right of my nipple on right breast. I had implants back when I was very young (1978)...so all my breast tissue was on top of the implants. Anyway...went to primary doc....he chocked it up to 'encapsulation' of the implant (very common), but never so close to the skin of my breast. So off to Plastic surgeons. By now, my right breast swollen, red, warm to touch. One PS said 'encapsulation', other said he wasnt sure. So in March I ask 2nd PS if he is comfortable with just replacing my implants...he said NO! So he order Ultra Sound...inconclusive...so wanted MRI of breast. Well now since I was 6 mos out from my last mammo...insurance wanted another mammo b4 approving MRI. By now (April) my right breast was 2x size of left and red and nearly 'hot' to the touch. Long and short...went in for mammo...Tech and Radiologist said 'HELL NO'. On the table with more intense ultra sound, then one (non-compression) mammo pic...Radiologist told me...'I am sure you have ILC'. That was April 20, 2011. My biopsy was next day...then in May I had my PET only to discover it had spread to my spine and ribs. It was THAT FAST!!!
Good news....I started Taxotere/Carboplatin/Herceptin, (TCH)... (I was triple positive) on May 23, 2011. I am not familiar with FAC that your mother is doing. I responded well...my 9cm tumor is all but gone...still a little thickening of the breast skin...my axillary nodes shrunk to 'not operable' size. I am still on Herceptin and Xgeva shots (for my bones mets) but last PET in April showed NED...Mammo/MRI early May this year...NED. I am sooo grateful!!
They still want to take my breasts...Bi-lat mastectomy. I WILL NOT let them do that as they cannot 'guarantee' that my down time for surgery will be given 'back to me' at the end. In other words...because I am stage iv with mets....why put my body thru the 'risks' of surgery when they can't tell me it will give me another 3, 6, 12 months, 2 years??? they don't kno. But I do kno what surgery does to the body....the lower immune system, the stress of even having surgery, and sooo much more. It's an incredibly personal decision...I cannot walk in your moms shoes. I don't remember if your mom is triple positive...and I am NOT an expert on the diff treatments out there. But this site is absolutely powerful in research and finding answers to your questions/concerns.
I will be 59yoa this Nov....I have a totally different 'outlook' on life now. If I can be of any further assistance...please feel free to PM me.
Love, Prayers, Healing energy to everyone, always!!
'Princess Silver Thighs' says....Yesterday is History, Tomorrow a Mystery, Today is a GIFT!
4/20/2011, ILC, 6cm+, Stage IV, Grade 3, mets, ER+/PR+, HER2+