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Apr 25, 2019 07:45PM
HausFrau I think you are right to question your care at this point. I have never seen an NP, only an oncologist, through all my treatment. If I were you, I'd ask for a consult now with an MD, a Medical Oncologist at that clinic. Your issues are serious, and this is a timely decision, and a big one to make, whether it's stopping the AI or whether there's a different solution ahead.
My own daughter is an NP, actually, and I have huge respect for that training, and I realize that an NP in oncology knows a ton. But, for the complicated, ever-changing world of breast cancer treatment, research and complicated medication decisions, I've wanted only the most totally trained and qualified care provider possible. A Medical Oncologist.
My MO told me all along: I need to be on this drug for 5 years or maybe longer (the jury is still out--some research might eventually show importance of 10 years for my particular diagnosis, and I just started my AI 6 months ago)---it's my most powerful weapon against a recurrence. He said that if side effects became impossible to manage, we'd first have a 1-2 week 'vacation' from it, which he says (and I see research confirming this assertion) does a 're-set' in many cases, and those same side effects sometimes recede or disappear when you re-start. Then, he said, if that didn't solve the problem, we'd try the other versions of the medication. In other words, there's a whole plan ahead for me if there are huge struggles for me with side effects. Nowhere in his plan was the idea that if it's a problem I should just go off my AI.
Brain fog and anxiety sound awful, I'm so sorry you're dealing with all that.
All of your research and listing of your side effect struggles and your question about being offered something like an anti-depressant or other help for managing those seems very valid. I don't think this NP gave you complete information nor a complete discussion of options, if she simply said "there are other side effects to worry about." Well, of course there are. But the whole picture of everything always includes that discussion, the pros and cons, so you can be in a position to understand the cost/benefit ratio and be educated about it.
By the way, "my oncotype was low" doesn't seem relevant to your care at this point. The OncotypeDX score is a decider for importance of chemotherapy, and that's an initial treatment decision way back when, in early 2016 probably, for you. You're on an AI for the sole reason that your pathology report shows ER+ My MO says "any % is important, no matter now small." My ER+ percentage is low, and it's still a super important medication for lowering my statistical risk of recurrence.
3/2003, IDC, Right, <1cm, Stage IA, 0/2 nodes, ER+, HER2-
6/9/2003 3DCRT: Breast
8/7/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
4/25/2018, IDC, Right, <1cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR-, HER2-
5/22/2018 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
6/25/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
11/6/2018 Arimidex (anastrozole)
1/2/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant