New TNBC - Need Advice

oddboood

I was just diagnosed with TNBC stage 1A, grade 3, Ki-67 80%. I met with a surgeon at Johns Hopkins and she said the protocol for stage 1 TNBC is lumpectomy, then chemo, then radiation. She poo-pooed Keytruda, which surprised me. Apparently, the norm at JH is to meet with the surgeon but not with the MO until after surgery. Does that make sense? I'd like to meet with the MO before I commit to treatment here, but I also just want to get started killing the cancer. Any and advice appreciated - especially about how to communicate and self-advocate with providers.

MountainMia

I had similar characteristics to yours. I was treated at a major NCI-designated cancer center in the midwest. I had a lumpectomy, chemo, and then radiation, just as your surgeon is saying. Keytruda, according to its own site, is

"KEYTRUDA is a prescription medicine used to treat a kind of cancer called triple-negative breast cancer (TNBC). KEYTRUDA may be used with chemotherapy medicines when your breast cancer has returned and cannot be removed by surgery or has spread, and tests positive for "PD-L1." "

https://www.keytruda.com/triple-negative-breast-cancer/

So in your case does not seem called for.

I did meet my MO prior to my surgery. Otherwise, my sequence was the same. My tumor was IDC 1.5cm, with DCIS of about 2.6cm.

Good luck making decisions.

b00pster

keep in mind that everyone's journey is different, take comfort in knowing that they customize YOUR treatment plan to YOUR specific needs. i had chemo first, but mine was a bit larger, so chemo first to shrink it, then surgery, then radiation.....but I have spoken to other BC patients that had they treatment in a different order.....and that is OK because there are so many factors that go into your treatment plan.

Hang in there, always try to find a happy place in your head.....you will need to visit that place often during your journey. I also had one of my good friends promise me that if she didn't hear from me via text or something every single day....to come over or call me because it probably means I'm not in a good mental space. Surround yourself with encouragement and don't EVER give up, because you CAN beat this - modern medicine has come a long way.

Make certain to research any and all drugs they are going to give you.....especially what the side effects are. I had the very UNfortunate experience of getting almost ALL of the side effects during my treatments.

BUT.....I did have a complete response to chemo and surgery.....i did have to go through radiation as well....although I did question if I really needed it.

I am now on a maint. plan and was put on Xeloda and Keytruda....I stopped Keytruda because of serious side effects (it caused severe hyperthyroidism-which I now have to be on meds for that the rest of my life). Which is why I say research EVERY med. they put you on and don't be afraid to ask questions. Remember everyone is different and react differently to things.

It's been 1 year exactly this month that I finished my chemo treatments and had a clean PET scan (which you have to get every 6 months-I have another this month).

I wish you the inner strength to weather this storm you are entering and the endurance to see it all the way through. And don't forget ASK questions, do not leave your appts. until ALL your concerns are addressed, if your dr. is good they will spend the time to address everything - as they should with something this serious.