Hi everyone,
So I had my original hormone positive BC (er/pr +ve, her² -ve, Brca -ve) diagnosed in 2005 aged 28. Had FEC chemo, radio and wle. No lymph spread.
Fastforward to 2018, aged 41, DX with pleural effusion (fluid around outside of lung) caused by lung Mets and multiple lytic bone mets. Commenced on denosumab (for bones), zoladex (to stop hormones), palbociclib / Ibrance, and Letrozole. I have managed really well with this combination, have had amazing results. No change and areas look almost healed. Phew!
Had a routine scan in July 2020 and found an enlarged axilla lymph node, went on to have biopsy and found it to be triple negative BC! Had a pet scan, looks as if all my previous hormonal cancer is inactive! However, they have now found a new primary, same breast that has spread to lymph nodes in axilla, pectoral muscle, clavicle and in neck!
Can’t quite believe it myself!
I’m now starting new treatment in about 2 weeks of nab/paclitaxel and Atezolizumab immunotherapy.
Anyone been through similar? Consultant said I’m in a unique position but it’s pretty lonely in this ‘unique’ position!
Hi
Sorry that you have to find yourself in this ‘unique’ position, it adds confusion and interrupts your existing treatment. I have heard of this before but quite often the primary, that caused the second secondary (if you follow me!) isn’t always found. I have had a similar experience where one liver lesion, which I always called my ‘rogue’ lesion as it didn’t respond the way all the others did, turned out to be triple negative once it was biopsied after being removed during a liver resection. I have, and continue to be, hormone positive, HER2 negative so this was very unusual. As I didn’t have a new primary it was just understood that the receptor status had changed which is known to happen.
I hope the new treatment works well for you, I don’t think there are many, if any, ladies/gents on your combination of drugs so it is, as you say, a lonely place to be in.
Sorry I can’t offer more help.
Nicky x
Hi Monkeynuts
Just reaching out to say you’re not alone. I had my third primary diagnosis this year (also 41), and unlike the previous two (one per breast) this one was triple negative. I’m either incredibly unlucky, or very lucky to still be here!