← Return to Pros and cons of endocrine therapy
DiscussionPros and cons of endocrine therapy
Breast Cancer | Last Active: 5 days ago | Replies (16)Comment receiving replies
Replies to "Thanks for your input. Yes I understand that many who post on these forums (or on..."
@kbradtke I posted about the Lobular Breast Cancer Alliance awhile back. If you are in Boston, Otto Metzger at Dane Farber is an expert in lobular.
Cancer diagnosis for me was similarly complicated and contradictory. I was told I was HER+, then equivocal, then negative. I had already bought a wig! I had 4 opinion and Dr. Wulf at BIDMC listened to me and retested with more cells. These days I would probably be "low HER2+".
I was either grade 2 or grade 3 depending on the institution. I had mixed ductal and lobular but even in the supposedly ductal portion, had loss of 3-cadherin which means lobular. None of the 4 oncs I saw even mentioned lobular issues.
I had grade 3, highish ki67% (proliferation), lymphovascular invasion (lymph, focal) but a low Oncotype. No point in doing chemo if it wasn't going to do anything or even make things worse. I did 5 years letrozole and the Breast Cancer Index told me that despite high risk, there was no benefit in further meds. January 15th is my 10 year anniversary.
I had pretty bad osteoporosis and three fractures but did letrozole anyway. I started with anastrazole, had an immediate reaction to the fillers, switched to letrozole, then to brand name Femara. As I said, my endo was leery of Reclast for me due to afib but most women I know do Reclast or Zometa with their AI.
Things in my body seemed to return to "normal" though my forearm skin is thin.
Any lobular cancer makes me nervous because it is hard to see on imaging. My friend had it and recurrence was found in abdominal imaging for another problem Apparently lobular also can spread to abdomen. The difficulty in seeing it on imaging is one reason I had the other breast taken off.