HER2 Support Group Forums - View Single Post - No rads under any circumstances it seems.

Chelee · 08-19-2006, 10:40 PM

tousled1, Thanks for letting me know about the couple women you know that didn't have rads and haven't had mets. I am just stressed because they all (medical team) stressed how important it is for someone with a prognosis as mine. Then once I got the final decision NOT to do radiation I asked one nurse practioner down there what can happen if I get "local" recurrance where I can't radiate?

She told me sometimes the incision can split open and it can be hard to get it to heal up and it can get pretty nasty and smelly. (Gee...that made me feel great!) But I DID ask her. I have so many questions NOW that I know I can't have radiation. I bet a play heck getting any answers.

But THANKS so much for your support. Like I said before...I get more support and reason to go on from the help of this board then I do from my medical team. They really don't care if I live or die and they KNOW I am STUCK with them thanks to the way this HMO is.

They are finally wearing me down...I hope they are happy. I am sure glad I fought my surgeon on having a lumpectomy now. He really pushed me to have a lumpectomy. But I had made up my mind that I just wanted it GONE. I have been married 26 yrs and the tumor was 3.5 cm...so I thought there wouldn't be much left of my breast anyway. Plus I did NOT want to risk having MORE surgeries if he was unable to get clean margins.
Now that I know I not only had the 5 positive nodes...I find out I have that "extra capsular invasion" which I did NOT know about till last Friday. (That makes me mad that no one told me. (They have kept me in the dark since day one.)

I would be twice as stressed had I not had a mastectomy...so your right tousled1, I am GLAD I did that. Thanks again for your post. The other women you know that did NOT have radiation...were they stage III with positive nodes? I was just curious if they were at high risk like me.

Thanks for your prayers...I need them.

Chelee

08-19-2006, 10:40 PM	#8
Chelee Senior Member Join Date: Feb 2006 Location: Southern, CA Posts: 2,511	tousled1, Thanks for letting me know about the couple women you know that didn't have rads and haven't had mets. I am just stressed because they all (medical team) stressed how important it is for someone with a prognosis as mine. Then once I got the final decision NOT to do radiation I asked one nurse practioner down there what can happen if I get "local" recurrance where I can't radiate? She told me sometimes the incision can split open and it can be hard to get it to heal up and it can get pretty nasty and smelly. (Gee...that made me feel great!) But I DID ask her. I have so many questions NOW that I know I can't have radiation. I bet a play heck getting any answers. But THANKS so much for your support. Like I said before...I get more support and reason to go on from the help of this board then I do from my medical team. They really don't care if I live or die and they KNOW I am STUCK with them thanks to the way this HMO is. They are finally wearing me down...I hope they are happy. I am sure glad I fought my surgeon on having a lumpectomy now. He really pushed me to have a lumpectomy. But I had made up my mind that I just wanted it GONE. I have been married 26 yrs and the tumor was 3.5 cm...so I thought there wouldn't be much left of my breast anyway. Plus I did NOT want to risk having MORE surgeries if he was unable to get clean margins. Now that I know I not only had the 5 positive nodes...I find out I have that "extra capsular invasion" which I did NOT know about till last Friday. (That makes me mad that no one told me. (They have kept me in the dark since day one.) I would be twice as stressed had I not had a mastectomy...so your right tousled1, I am GLAD I did that. Thanks again for your post. The other women you know that did NOT have radiation...were they stage III with positive nodes? I was just curious if they were at high risk like me. Thanks for your prayers...I need them. Chelee __________________ DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes. Rt. MRM on 1-3-06 -- No Rads due to compromised lungs. Chemo started 2-7-06 -- TCH - - Finished 6-12-06 Finished yr of wkly herceptin 3-19-07 3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07 9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV. 9-28-09 Loading dose of Herceptin & started Zometa 9-29-09 Power Port Placement 10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head. 11-19-09 RT. Femur surgery - Rod placed 12-7-09 Navelbine added to Herceptin/Zometa. 3-23-10 Ten days of rads to RT femur. Completed. 4-05-10 Quit Navelbine--Herceptin/Zometa alone. 5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy. Results to FISH was unsuccessful--this happens less then 2% of the time. 7-7-10 Recurrence to RT axilla again. Back to UCLA for options.