Stage 3b IBC chemo resistant?

agriff127

Hey ya'll! Wondering if anyone has a similar situation. I'm 32 and was diagnosed earlier this year with stage 2b breast cancer. I had a local recurrence while on AC chemo in May. My ONC then switched my chemo to Taxol + Carboplatin and it seems it was also resistant to that combo! I just underwent a mastectomy a week ago due to my tumor growing very large (they were saying it was hematomas for a month before my breast swelled and the cancer ended up on the skin of my breast!!! ) Today I got amazing news that my margins were clear from my mastectomy surgery!!! Have any other triple negative ladies/gents on here been chemo resistant? I know i still have options like trials and radiation to prevent it coming back, I just wanted some feedback about what other people have done with this same situation.

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IntegraGirl

Hi there,

I am also TN with IBC. Great combo! I finished chemo Aug 1 and found out this week that a new mass developed and has been growing despite chemo. I'm going for tests this week to make sure it hasn't spread. Surgery is scheduled for Aug 31 and radiation will follow.

It's still such new information for me with more information to come from the tests that I don't have a fully developed game plan but wanted to let you know that someone else is on a similar path.

agriff127

Hey IntegraGirl, sending so many positive vibes your way for the upcoming tests! Are you getting a CT scan (or maybe it's called a PET scan?) before surgery? I promise once you get your surgery done it will feel like a huge weight lifted off your chest (pun intended lol) I'm a little over a week post op and I feel so much more confident about going forward from here. I was just getting bad news after bad news since January that staying super positive was starting to wane. This surgery has given me a new boost of positivity and hope and I'm ready to be confident in cure moving forward. Surgery was a turning point for my surgeon and I and we are looking forward to keeping my cancer free!!! I really hope you have a huge loving support system around you These forums are very new to me, but talking to people who know what you're going through is so nice bc I feel like even though I have a great support system they sometimes cant wrap their heads around whats going on inside my head.

IntegraGirl

Thanks so much for your thoughts agriff. Great news on your surgery. I hope I'm feeling the same way afterwards.

No CT. I'm getting bone scan, chest X-ray, mammogram and US on my other breast and US on my liver.

Traveltext

Well, Agriff and IntegraGirl, you've got a little IBC club going! You'll find other IBC forums here including the famous IBC Lounge which has a bunch of long-termers ready to help. Also some TNs there who are doing well IntegraGirl. Good luck with your surgery.

Agriff, glad your margins were clear, how was the path post op? Did you achieve complete pathological response? I didn't, and that's often the case with IBC. Nevertheless I'm three years NED post treatment and powering on

agriff127

hey Traveltext I'm not sure what a pathological response is? My surgeon had mentioned that it appeared to be chemo resistant? Is that in the same ballfield? I have another surgery follow up appointment Thursday and hopefully I can gather some questions to ask him. I was just so excited about clear margins that i'm not sure if i really heard anything else he said

Traveltext

Agriff, a pathological complete response is when there's no sign of cancer in the tumor post op. That's the same as your surgeon saying your tumor was chemo resistant.

Clear margins are a good sign and, remember you've had the tumor removed. You could ask your surgeon if he/she thinks radiation is necessary in your case. Let us know how you go.

Kicks

A complete pathological response (CPR) is when after neoadjuvant (pre-surgery) chemo is finished, there is no cancer cells in the surgical path. report.

Most wwe ll have a TX plan that does 2 different chemos neoadjuvant (pre surgery) but I did both neoadjuvant Chemo and adjuvant chemo but most don't. My TX plan was never to get a CPR but to do neoadjuvant Chemo to get 'nest' to form a lump with good margins and get it out. Which it did what was wanted - at UMX Surgeon was able to get it 'all' out but the IBC was still present in path. report. Then did adjuvant chemo to be sure there were no cells hiding 'somewhere'. Makes a lot of sense to me to do what I did and it was 8 yr ago when DXd and still 'here' and NED.

agriff127

Kicks; before i had my mastectomy (which was scheduled after i went to the ER after missing chemo 2 weeks in a row bc of levels and had bumps/rash on the side of my lumpectomy scar) I was being treated with AC chemo after my lumpectomy (for my original diagnosis) and i had a recurrence during that AC chemo so they switched my chemo to Taxol + Carboplatin and my recurrence continued to grow on that chemo as well (went from about 3mm to 10mm they found when they did my mastectomy) but they kept telling me the growths were hematomas.... Needless to say after the mastectomy they found they overlooked the huge lumps until I finally got an CT scan while in the emergency room... When we got the pathology back my surgeon told me that the tumor seemed to be chemo resistant and grew to 10mm BUT after a really crazy and long surgery and taking most of my skin and taking 3 hours to figure out how to close me up WE GOT CLEAR MARGINS It's the best news i'v got since January!!! Now that the surgery is behind me I'm looking forward to looking into chemo resistant preventative trials and rads!