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Re: Appt today with my ONC - tamox or AI??
I went to my primary doctor yesterday, and I just love him!! He hit the nail on the head when I told him my feelings. He said it sounds like he is being to "Cavalier" and that is exactly it!! He said go to Indiana Unversity or he could give me a referal to a doctor in Chicago. But I decided I have an appt with my PS on January 27th, so I will talk to him about an ONC at IU. IU is a teaching hospital so he felt they will be the one to have trials and be more on the cutting edge of things. Hopefully, I won't ever have to go their for a reoccurrance, but I want to feel like I am being heard and not taken for granted or a number.
When my feet and hands were hurting they did an echogram, and I asked the ONC why did I have that for my feet. His reply; I don't know, and I said but you ordered it???? Then he glossed over it and back to having fun. I realize he doesn't want me to worry, and I don't know that I am. However, I want to be the most proactive and preventative I can and NOT be the perfect word "CAVALIER"!!
My primary doctor said about my feet and hands.....He said oh yes I have had patients and that is more common then not having that trouble from Tamox. Then he said for some reason ONC's will act like NO that isn't it but when one of his patients went off it stopped. Also, he gave me a new Vitamen to take or try and he said it really helped another patient of his with her hands and feet!! I picked it up last night. 
He took time, and I was heard!! My primary doctor and my PS are wonderful!!! Hopefully, soon I will have a new ONC that is the same.
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myleftlump.wordpress.com - started blogging my
IDC breast cancer
7/2012 diagnosed with multiple solid lesions
7/20/12 biopsy done. ER+ 30 PR -, HER+++,k167 80% Grade 2
9/2012 biopsy on lymph node - showed malignant
9/2012 Pre-adjunctive TCH chemo.
12/6/12 MRI after Pre-adj.
Results: Modest Decrease in size of left breast malignancy As well as the associated satellite lesions and auxiliary Adenopathy compared to prior study. Doctors hoped for better but good response it didn't grow.
12/18/2012 left masectomy with axillary nodes
Size 3.2 CM, Nottingham score 9/9
Grade 3, no evidence of in situ carcinoma
Areas of angiolymphatic are identified
Carcinoma is 0.5 cm from inked deep
Margin of excision
Attached axillary lymph nodes: metastatic
Carcinoma in 6 of 8 nodes.
Size of largest node 1.5 cm
Extracapsular
ER + 73%, PR+2%, HER2+
2/27/13 6 weeks of IMRT radiation finished
2/2013 Started on Tamoxifan 5 years.
8/2013 will take last Herceptin, 17 treatments total every 3 weeks.
BRCA1 & BRAC2 - Negative
August 28, 2013 DIEP flap on the left breast.
February 2014 Nip & Tuck
March 14, 2014 nipple reconstruction and removed port.
August 14, 2014 lump in lymph nodes under arm and above clavicle. Stage IV
August 28, 2014 herceptin And projeta starting and port put back in.
3/18/15 stopped arimidex.
3/18/15 progression....Tdm1
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