31 years old, stage four IDC

Amandopando805

hi all

I was diagnosed at 28 years old. Did chemo, double mastectomy, radiation, chemo pills. Currently I'm on letrozole. I made it for about a year with clean scans until my scans showed a small spot in my hip bone. My onc put me on Ibrance for two cycles, and my next scans showed I developed fluid around my heart and the spot in my hip bone grew from 1cm to 2cm, and there's a 3mm spot in my spine. I'm stopping the Ibrance and starting erubulin chemo on the 16th.

I'm in Rochester Ny. Iv been thinking about seeking a third opinion. My first one was in Erie pa, which completely ignored my original massive tumor for years. Iv been in Rochester for a couple years now getting treatment.

Just wanting to post to see if anyone has anyguidance to give me. I am ER+ HER2-

Amandopando805

HER2-****

moth

hi, I'm sorry you find yourself here. You probably want to go to the stage IV forums. There is a thread for bone mets which would be very helpful. Have you had rads to any of your lesions?

Have you had.the mets tested or retested for er/pr/her2? Sometimes tumors change hormonal profile. Also if you do a genomic test like foundation or tempus you might find actionable mutations.

Is the cardiac fluid a result of chemo or a metastatic process?

Hugs

illimae

Amanda, I’d try for a 3rd opinion too unless you’re comfortable proceeding with your current MO and plan. I was diagnosed stage IV de novo at 41 with a single hip bone met too. If the new chemo doesn’t show improvement soon, you could ask about radiation to that spot. They usually reserve rads to address pain but it may be an option. Good luck

Moderators

Amandapando, we're so sorry to hear of this progression, and at such a young age, but we're so glad you've come back to our Community. You're always sure to find helpful responses and great support here -- we're all here for you!

As moth points out, there is a very popular and helpful thread in the Stage IV ONLY forum called Bone Mets thread, where we suggest you introduce yourself and share your story. You're sure to get lots of advice and encouragement there!

We hope this helps. Please let us know if you need anything at all.

--The Mods

buttonsmachine

Hey there, if you are thinking about changing oncology teams or getting a second opinion, it might help to go to an NCI designated cancer center, if you haven't already done so: https://www.cancer.gov/research/infrastructure/cancer-centers/find

I transferred my care to one a while back, and things have been much better since then. There is also a Stage IV and Under 40 thread around here, although it is not super active: https://community.breastcancer.org/forum/8/topics/872798?page=2#idx_57

Best wishes to you - it sucks dealing with this in our 30s.