HER2 Support Group Forums - View Single Post - DCIS HELP NEEDED -- I'm just thinking...

Andrea Barnett Budin · 07-19-2007, 01:29 PM

Anita, I really appreciate your taking the time to respond to my distress call. I have urged Sandy to get a second opinion. Even a third! (I actually had 5. My husband said to me, I don't mind, but when do we stop?) With each wonderful onc came a little bit different spin, something to add to the mix, to make me think and reflect.)

I also have read that we should get 2 pathology reports. Surely when I was a *newbie* I didn't have the wherewithall to think of such a thing. I was reeling. And, my sweet Sandy thinks she's in good hands and needn't give matters a second thought. I keep gently nudging.

My present onc looks back at my 12 yr old pathology and is surprised that I am ER/PR- AND HER2+ w/ILC. Very unusual, "if you are" he says, doubting the report. Wish I had a 2nd opinion. Not that it really matters at this point, but I'd like clarification and no doubts or wondering.

I have noted that those who had the radiation fared well and have questioned my not doing it. It was suggested as something to think about after the chemo. After the chemo, it wasn't addressed again and I guess I didn't want to bring it up or pursue it. I felt I had had it. Then, I recurred.

My friend Rochelle was dx 4 mnths after me. She had chemo and Tamoxifen and actually did Tamox for 6 yrs, sure it was keeping her alive and afraid to let go. She stopped in '01 and is fine. I'm having dinner w/her and her husb tmrrw. Hope you have as good an outcome, w/all yr insurance (chemo, radia, Tamox). Sending loving energy full of wellness to you, Anita. You're a sweetheart for hearing my call. Thank you so much... ANDI

07-19-2007, 01:29 PM	#3
Andrea Barnett Budin Senior Member Join Date: Oct 2005 Location: LAND OF YES! w/home in Boca Raton, Florida Orig from L.I., N.Y. Ever hovering IN THE NOW... Posts: 1,904	Thanks Anita -- I Hear You Anita, I really appreciate your taking the time to respond to my distress call. I have urged Sandy to get a second opinion. Even a third! (I actually had 5. My husband said to me, I don't mind, but when do we stop?) With each wonderful onc came a little bit different spin, something to add to the mix, to make me think and reflect.) I also have read that we should get 2 pathology reports. Surely when I was a newbie I didn't have the wherewithall to think of such a thing. I was reeling. And, my sweet Sandy thinks she's in good hands and needn't give matters a second thought. I keep gently nudging. My present onc looks back at my 12 yr old pathology and is surprised that I am ER/PR- AND HER2+ w/ILC. Very unusual, "if you are" he says, doubting the report. Wish I had a 2nd opinion. Not that it really matters at this point, but I'd like clarification and no doubts or wondering. I have noted that those who had the radiation fared well and have questioned my not doing it. It was suggested as something to think about after the chemo. After the chemo, it wasn't addressed again and I guess I didn't want to bring it up or pursue it. I felt I had had it. Then, I recurred. My friend Rochelle was dx 4 mnths after me. She had chemo and Tamoxifen and actually did Tamox for 6 yrs, sure it was keeping her alive and afraid to let go. She stopped in '01 and is fine. I'm having dinner w/her and her husb tmrrw. Hope you have as good an outcome, w/all yr insurance (chemo, radia, Tamox). Sending loving energy full of wellness to you, Anita. You're a sweetheart for hearing my call. Thank you so much... ANDI __________________ Andi BB '95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive... '98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!) + good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either... Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...