Triple Negative Breast Cancer: What treatments are you having?

Thank you for the suggestion about trying to arrange genetic testing of tissue samples from the mastectomy. I'd started wondering about that, thinking it might be a good thing to see if I could arrange it. If I can get into Mayo before the surgery, hopefully they could help me navigate that.

A second opinion is a good idea. I'll see if I can arrange it. Guess I've been hoping that's what Mayo would be, if I can't get there in time to have them be my primary oncology team.

With prior cancer, it may change the treatment options as well.

I think immunotherapy is important for TNBC since it doesn’t respond to hormone treatments. I’m on that and chemo for 1/week for 12 weeks to get a complete result (no cancer detected) before surgery. I know everyone’s path is different though. I am getting my treatments at Mayo. I think their standard for a tumor size T3 not spread is AC and immunotherapy for 12 weeks. Then another combo for another 3 months for a total of 6 months before surgery. I am in I Spy 2 study too though which is a d escalation less harsh path. Get all your options, take someone with you to take notes. Ask all the questions for each treatment option. When you do a study, they have to redo biopsies and MRI’s and wait for your drugs to get selected (2 weeks in my case) so it delayed treatment start by 3 weeks which was nerve racking and not for everyone. Let me know if you have questions!!

I don't know which companies, if any, offer genetic testing that could provide valuable information about your situation. Buy please research that so, when you have surgery, tissue samples will be held for submission to a genetics testing firm. I'm a big believer in using any avenue to gain valuable information and the clinical biopsies and such, while important, can't measure every variable.

Also is it possible to make an appointment with another oncologist in your area while you wait for an opening at Mayo? You can always cancel an appointment if you need to and someone else will be grateful to grab it who also might be dealing with cancer for the first time and otherwise unable to see someone fast.

I am nearly 68, but had previous Hodgkins lymphoma at age 35, with radiation and chemo. So I am not able to have radiation again. My body has been declining much more quickly than my 67 year age implies (at least some of my health issues are definitely due to the treatments 30+ years ago).

I'm encouraged to hear what your oncologist recommended. I wish there was some data that could tell me it is worth the mastectomy alone (which is also not easy – but easier on the body than the chemo for TNBC). Without your info, I was feeling pretty lost – that choosing that path might really be just wishful thinking. But if it is recommended by Alberta's medical community for those who are older, that means there must be some real benefit.

Being ok with a decision is incredibly important when on a journey as unsettling and uncertain as this one. I'm glad you are there. Hopefully this will help me get there, too.

Thank you so much for sharing your path. Good wishes for continued peace of mind and health to you, too!

Hi, @cindyhikes
I used the American Cancer Society's statistics when determining my care for TNBC. I am 2 years in for Stage 3, which did get in my lymph nodes and chest wall.
https://www.cancer.org/cancer/breast-cancer/about/types-of-breast-cancer/triple-negative.html

Thank you so very much for this. It is possible to do surgery first, but I've been reluctant to do that if there really is no chance it would be enough to stop the cancer. I'd like to know if it is actually possible that might do it before I go down that path.

Or if it might slow the progression a few months or a year, it still might be worth it.

Hi @cindyhikes, welcome. You'll notice that I moved your question about choosing mastectomy only for treatment of TNBC to this existing discussion:

– Triple Negative Breast Cancer: What treatments are you having? https://connect.mayoclinic.org/discussion/triple-negative-breast-cancer/

I did this so you could see the choices others have made and to more easily connect with triple negative members like @thielmann1 @markagottlieb @kimann @sharonemma @destincindy and more.

I believe that @jjhhdd and @skay (caregiver for her mom) chose surgery only.

Cindy, you didn't mention the size of the tumors. Might it be possible to do surgery first and then decide whether or not to have chemo and/or immunotherapy?

I am a 67 yo who had radiation & chemo for Hodgkins 30+ years ago. I was recently diagnosed with TNBC, Grade 3, Stage 2, localized with 2 tumors and no sign of lymph node involvement.

My doctor recommends standard NAC, mastectomy, AC, but I'm considering mastectomy only. I've hunted but can't find any data on chance of survival.

Does anyone know if that information exists? It would greatly help as my oncologist is urging we start right away – on one path or the other.

I am trying to get into Mayo, but am in a triage queue that I've been told is 7-10 business days long.

Thank you and good luck to you also!!