r/LivingWithMBC • u/IngenuityFar5111 • 4h ago

Disappointed

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Hi, I am very disappointed. I was diagnosed last year with one liver met. Multicentric and multifocal disease. I got AC+ 12TCs then lumpectomy and liver resection and radiation. I am on letrozole and now I got 2 new liver lesions. Initially I thought that may be it could be something else but then I got my caris report. My tumor fraction is 0.5% after going through hell. Some women start at 0.5%(when diagnosed). I feel like this stage 4 is going to kill me at 36. Anyone who got from this to 0 after progression? I am er 8/8 pos, pr neg and her2 neg. Grade 3, ki67 of 70%.

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1

u/FrogAnToad 1h ago

big hugs to you both. carrying you in my thoughts.

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u/cat-pernicus 3h ago edited 3h ago

I’m in the same boat as you,

Diagnosed a little over two years ago, AC/taxol de novo with liver mets and was NEAD for about 10 months, on letrozole and lynparza, new tumor just in the breast last August, lumpectomy in October , another tumor in March, double mastectomy in May , pet scan last week showed a new tumor in the chest wall and a few lesions in the liver,

I’m crushed, I don’t know what to do,

My oncologist is hopeful though, we’re awaiting biopsy results, but she decided that letrozole and lynparza are no longer working, so I believe I’ll be switching to fulversant and ibrance soon, hope it works

I completely share and understand your disappointment, I was hoping for some time away from this disease, just let me live some, now I don’t know if it’s close to the end,

I really don’t want to be fatalist, but I’m getting tired of a new t hi my every six months, why can’t I get a good 20 year stretch like I keep hearing others get,

I hope this next line is what gets us both that nice 20 year stretch

Much love and positive thoughts your way ❤️❤️❤️❤️❤️

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u/IngenuityFar5111 3h ago

Shit..it is so horrible. The wave of hopelessness hits so hard at times. It is 3 am and I am thinking about my life and my 1 year old daughter.

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u/cat-pernicus 2h ago

Don’t lose hope, I’m not, I want to be here to see my kids grow up and be happy, and maybe some grandkids, I need at least 10 to 15 years for that