HER2 Support Group Forums - View Single Post - Please Help Me Prepare a Breast Cancer Talk

StephN · 10-23-2007, 12:32 PM

Some good ideas here to cull out.

For me, I would like to get in a word about "bedside manner."

There have been SO MANY women who have posted here on how unsatisfactorily they have been treated either by someone on their care team or in the infusion suites. This is not the usual case, but gentle reminders might lessen these devestating encounters.

Our emotions are peaked and we "tip over" easily when fatigued and under a long treatment siege. A careless act or word can have such a huge impact on a patient.

The other half of that is that when we bring some ideas that are not in the mix for our treatment or questions, that the care team take time to listen and respond. We are not little kids in kindergarten who are unable to understand anything about this disease.

Thanks, and I know you will do a SUPER job with your keynote speech.

10-23-2007, 12:32 PM	#9
StephN Senior Member Join Date: Nov 2004 Location: Misty woods of WA State Posts: 4,128	Bedside manner Some good ideas here to cull out. For me, I would like to get in a word about "bedside manner." There have been SO MANY women who have posted here on how unsatisfactorily they have been treated either by someone on their care team or in the infusion suites. This is not the usual case, but gentle reminders might lessen these devestating encounters. Our emotions are peaked and we "tip over" easily when fatigued and under a long treatment siege. A careless act or word can have such a huge impact on a patient. The other half of that is that when we bring some ideas that are not in the mix for our treatment or questions, that the care team take time to listen and respond. We are not little kids in kindergarten who are unable to understand anything about this disease. Thanks, and I know you will do a SUPER job with your keynote speech. __________________ "When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau Live in the moment. MY STORY SO FAR ~~~~ Found suspicious lump 9/2000 Lumpectomy, then node dissection and port placement Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR - Adriamycin 12 weekly, taxotere 4 rounds 36 rads - very little burning 3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED! 2003 & 2004 no active disease - 3 weekly Herceptin + Zometa Jan 2005 two mets to brain - Gamma Knife on Jan 18 All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying Continue as NED while on Herceptin & quarterly Zometa Fall-2006 - off Zometa - watching one small brain spot (scar?) 2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava 2008 - Brain and body still NED! Port removed and scans in Dec. Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011 STILL NED everywhere in Feb 2014 - on wing & prayer 7/14 - Started twice yearly Zometa for my bones Jan. 2015 checkup still shows NED 2015 Neuropathy in feet - otherwise all OK - still NED. Same news for 2016 and all of 2017. Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.