My original diagnosis did not inlcude testing for HER2. The trial results were released just prior to my finishing A/C----I saw it on TV and asked my new onc about it, who then did testing and found that I was HER2 positive. This changed my treatment plan overnight and introduced a whole new set of questions that I needed time to wrap my head around.
After being home for a day or two and going over everything new I had been told, I faxed a long letter to my onc comprised of all my questions and concerns.
I first received a call from a resident answering all my questions, then my onc called to make sure that I understood everything and was comfortable with my treatment plan and did not have further questions.
Composing the letter gave me the opportunity to gather my thoughts and cover all the areas of questions and concerns. My onc and the staff at the cancer center were very attentive and thorough in their responses to questions and concerns, and have continued to be so throughout my treatment.
Perhaps putting all your questions and concerns down on paper and faxing them would be a possibility for you.
As you move into treatment, I think you will find that the journey, although difficult, is certainly "doable", especially in light of the benefit.
Wishing you the best of luck,
__________________
Rhonda (Sassy)
dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
3/17 Stop Evista--unwelcome side effects!
NED and no meds.......
14 YEARS NED!
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