Questions regarding treatment

Graceandbeauty1

I was diagnosed in May 2018 with three separate diagnosis'. Triple negative in the right breast and Her2+\HR-, and Triple positive in left breast. DCIS was found throughout entire breast on both sides. Grade 3 in all cases, Greater than 95%. The DCiS was grade 3, comedo , severe necrosis throughout. I had bilateral mastectomy in July 2018, no reconstruction due to health issues.

No other treatment has been done. Tumors were 1.12cm, 1.3cm and a .17 mm. No chemo, no radiation.

My doctor has done no scans except for a lung ct which showed 8 nodules 9-11mm last Dec. All she does is check my temp and push on my scar. The scar is a whole separate issue. She butchered me!! Didn't even attempt to make decent incision lol. I'm in and out in less than 5 minute.

Everything I have read says how aggressive the Triple negative and Her2+ is and that standard treatment is usually some type of chemo/meds even with smaller tumors. I have taken studies in, asked questions, and asked for additional tests/scans. Nothing. No blood work. NOTHING!!

Am I right to be scared, mad, feel like a number etc!!? I'm in the damn Research Triangle and this is care I have gotten! Why?

Any help/advice would be appreciated! Thanks!

I am also posting in the Her2+ page and Triple Positive page.

Trishyla

In a word, yes, Graceandbeauty, you should be angry. You are not receiving standard of care. Both triple negative and Her2 positive are extremely aggressive and are always treated with chemotherapy.

Like you I had as mixed diagnosis. Triple negative on one side and hormone positive (not Her2) on the other. I had five months of neoadjuvant chemo, BMX, then five months on Xeloda since I did not get a pathologically complete response from my initial chemo.

You deserve better care. Please seek out a second opinion. Your insurance should cover it with no questions asked. Look for an NCI designated facility, preferably associated with a teaching or research hospital.

Keep advocating for yourself. It's your life at stake here. Good luck.

santabarbarian

Trishyla is right. It looks like your instincts of being undertreated are correct.

BevJen

If you are in the research triangle, then you should be able to get to the UNC Lineberger Cancer Center, which has an excellent reputation. From their website:

"The UNC Lineberger Comprehensive Cancer Center is a cancer research and treatment center at the University of North Carolina at Chapel Hill. Serving patients at the N.C. Cancer Hospital, UNC Lineberger is the only public comprehensive cancer center in the state of North Carolina."

Dr. Lisa Carey is there, if you can get in to see her -- she is a medical oncologist, very up on the latest research, and if she can't see you, perhaps she can recommend someone else there who can. You should be on some sort of treatment and as others have said, your instincts are correct. Also, it sounds like you are simply seeing your breast surgeon. You should be under the care of a medical oncologist plus your surgeon. Shame on her/him for not referring your further.

Good luck.