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May 12, 2019 12:29PM
Clarie, what you said above was basically what my point was when I said don't worry so much about MO vs BS. Just pick a dr who will listen to you and partner with you.
I was diagnosed in 2007 at age 38. Neg nodes, but pleomophic ILC. My original MO did not do physical exams post chemo, so I fired her.
Second MO, whom I was with for 6 years, wanted to stop doing my post-lumpectomy breast MRIs. I could tell her decision was insurance driven, not clinically driven, so I insisted we continue the MRIs. We compromised on doing them every other year, so skipped a year, then the next MRI--bingo, local recurrence (while still on Tamoxifen). All she could say in the followup appt for that was, "Now, why had I ordered this MRI for you??" Plus laughed that my hot flashes would get worse when I switched to an AI.
I fired the second MO, went back to my original BS/PS, and started up with an MO in her group. The BS/PS did a mx/flap reconstruction that has left me in chronic pain. She also did a lift of the "good" side. Both she and MO #3 insisted we wait on doing a breast MRI on the "good" side, due to post-op inflammation.
Both the BS/PS and MO #3 were dismissive of my post-op issues, with the MO going as far as telling me "my mind wasn't accepting the surgery". That same appt, he was also dismissive of information I brought him from the first annual ILC Symposium. All he kept saying is, "Why are they holding this in Pittsburgh? It's such a dump:"
So MO #3 got fired, along with the BS/PS. New MO #4 immediately ordered a breast MRI on the "good" side. It was hard to read, so she and radiology insisted on a followup breast MRI six months later.
Boom, new 8 cm primary, positive nodes.
Towards the end of neoadjuvant chemo for the new 8 cm primary, I was feeling unsteady. MO #4 ordered a brain MRI. She said it is so much easier for her to order whatever test she wants b/c she is in private practice. The other places I've been at (one being a NCI cancer center and major teaching hospital) were way too beholden to their protocols.
So, off I go for the brain MRI, and tah dah--brain mets.
Had I stayed with one of the other three MOs, or the BS/PS, I'd be dead already, probably several times over. I have a new BS, although I'm not having an mx on the new primary side now due to the brain mets, but if I ever need him, he is wonderful. He is very on top of ILC imaging issues.
I tell my long winded saga to reinforce my point that you just have to go with a dr who listens to you and partners with you, whether they be a BS or an MO. Too many of us have the unfortunate experience of dismissive drs with inflated egos, or ones who simply don't put any thought into us as individuals. Sometimes that later point is because they can't put thought into us--their employer dictates a paint-by-numbers approach in the interest of cost savings.
Stage IV Pleomorphic ILC, initially diagnosed at age 38
6/7/2007, ILC, Left, 2cm, Stage IIA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH)
7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel
12/27/2007 Whole-breast: Breast, Chest wall
3/1/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
4/24/2015, ILC, Left, 1cm, Stage IA, Grade 2, 0/10 nodes, ER+/PR+
5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap
2/1/2018, ILC, Right, 6cm+, Stage IIIA, Grade 3, ER+/PR+
2/15/2018 Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel)
6/20/2018, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 3, ER+/PR+
Faslodex (fulvestrant), Zoladex (goserelin)