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hutchibk · 01-15-2008, 02:18 PM

This is timely for me...I posted on my local support group's website a month ago after attending the San Antonio Breast Cancer Symposium. I wanted the younger surviviors and first-timers to know that they have to do whatever is necessary to get the best care and results... and it included my diatribe about dismissive doctors.

"But the only way to fight this disease is to be a FULL participant in your care. Do your homework and always increase your knowledge about your cancer. Take new lists of questions to your Onc every time you see them. Become a sharp and compelling patient. It really does make a difference. You are your own best advocate. If your doc is not willing to answer your questions and help you become more knowledgeable, it might be time to consider a new Onc. If they are dismissive of your concerns, interest and contributions, and seem to have a disdainful attitude when you want to talk about vague new symptoms or new developments, etc... (e.g. treat you like you have no clue and won't possibly understand)- then it might be time to find a new Onc. I have a joke with my Onc that I am his Jr. Doctor, and he has really embraced me bringing in new info, questions, and all of my concerns."

Is there another onc in that office that you can switch to? I know it is convenient for you, but it does not sound like he has your best interest at heart... Let us know what you decide to do!

01-15-2008, 02:18 PM	#18
hutchibk Senior Member Join Date: Oct 2005 Posts: 3,519	This is timely for me...I posted on my local support group's website a month ago after attending the San Antonio Breast Cancer Symposium. I wanted the younger surviviors and first-timers to know that they have to do whatever is necessary to get the best care and results... and it included my diatribe about dismissive doctors. "But the only way to fight this disease is to be a FULL participant in your care. Do your homework and always increase your knowledge about your cancer. Take new lists of questions to your Onc every time you see them. Become a sharp and compelling patient. It really does make a difference. You are your own best advocate. If your doc is not willing to answer your questions and help you become more knowledgeable, it might be time to consider a new Onc. If they are dismissive of your concerns, interest and contributions, and seem to have a disdainful attitude when you want to talk about vague new symptoms or new developments, etc... (e.g. treat you like you have no clue and won't possibly understand)- then it might be time to find a new Onc. I have a joke with my Onc that I am his Jr. Doctor, and he has really embraced me bringing in new info, questions, and all of my concerns." Is there another onc in that office that you can switch to? I know it is convenient for you, but it does not sound like he has your best interest at heart... Let us know what you decide to do! __________________ Brenda NOV 2012 - 9 yr anniversary JULY 2012 - 7 yr anniversary stage IV (of 50...) Nov'03~ dX stage 2B Dec'03~ Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive Jan'04~ Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo. Sept'05~ micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only Aug'06~ micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin Feb'07~ Genetic testing, BRCA 1&2 neg Apr'07~ MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin May'07~ Started Tykerb/Xeloda, no WBR for now June'07~ MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic! Aug'07~ MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2 Oct'07~ PET/CT & MRI show NED Apr'08~ scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone) Sept'08~ MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers Oct'08~ dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion Dec'08~ Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable June'09~ new 3-4mm left cerrebellar spot zapped with IMRT targeted rads Sept'09~ new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors. Oct'09~ 25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen. Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen. June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen. Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice. Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots. Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011. Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah. "I would rather be anecdotally alive than statistically dead."