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Old 06-03-2008, 08:13 PM   #20
Joan M
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Join Date: Oct 2007
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Hi Tonya,

My first oncologist was very nasty and his nurse was vicious so I switched. He didn't like being asked questions and said once, "Do what you want."

Well, in a way he was right. I was going to do what I wanted and I think that's because I really lacked confidence in him. So I think it's important for you to feel that your oncologist is on top of things.

He wasn't. First he screwed up my dose dense schedule by waiting 7 days to give me 1 neupogen shot for three days in a row, rather than waiting 3 days to give me 1 shot for seven days in a row.

No wonder my white cell count was too low when after two weeks I was due for my next treatment.

Admittedly, he did give me Herceptin off-label (after I twisted his arm), but then he messed up on the weekly Taxol dose by giving me one-third of the dose that's given once every three weeks, when actually the weekly dose given with Herceptin is 20% more than that.

I generally refer to him as the village idiot, and he has some kind of top doctor award hanging on his office wall.

My new oncologist is very smart, listens and explains things to me. She doesn't have a big ego and is not afraid of other opinions. In fact, she welcomes them.

I've been interviewing a lot of doctors lately to decide how to handle the second recurrence in my lung and I'm finding out that I favor the ones who talk to me about what's going on. But I think it's necessary to ask questions too, otherwise doctors probably have a tendency not to provide a lot of information in the interest of time and not overloading the patient.

If the doctor has a sense of humor that makes me feel comfortable too. Last week when I was interviewing an intervention radiologist at Sloan-Kettering about radiofrequency ablation he said, "Well, you've certainly done your homework. You get an A+."

I think it's important for the doctor to adjust to who you are, not the other way around.

Joan
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Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2023 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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