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twosenuf99 · 01-23-2012, 07:14 PM

Hi ladies
It's been forever since I posted but I do try to get on here and stalk the group everyday.. My thoughts are always with you all in this crazy journey of ours..

I am currently doing 5FU, Epirubicin, and, Cytoxin every 3 weeks. I have one left to go on February 13. I am also in the middle of reconstruction ie: getting expanded 120ccs in each "breast" weekly. By my calculations they will be filled to the max in about 3 weeks.

Originally the Onc told me I was Er-, PR- and Her2+.Then she said I am Er+ and PR+ along with Her2+ but the er and pr are so low she wasn't giving me the Tamoxifen.. Saw her today before my Chemo tx and she now says even though they are extremely low around 2. something she changed her mind and now will give me the Tamoxifen (even though she believes it won't help)with Herceptin when I am done chemo. She also wants to do 6 weeks daily rads. in 3 different places on my chest, subclavicle and underarm area.

My questions or concerns are like most others.. After reading some of the horror stories of Tamoxifen I am not sure what the benefits for me would be compared to the disadvantages.. I also am debating doing rads as after my mastectomy they could not find any disease. She is telling me it is protocol for stage 3c for as aggressive as it was to do it. I am also concerned with the side effects of rads compared to the benefits. I know if I do rads it can come back. If I do not do rads it can come back. She said there are no studies to give her any statistics on my particular cause since after the initial 16 weeks of chemo the 8 tumors and lymph node involvement was gone. Could not even find cancer cells to send to the study I was on.

I am not sure what to do as I feel whatever choice I make it may be a bad one. Please help me with your wisdom and experience..

Also on an easier note has anyone ever had the expanders filled 120ccs a week? My ps will not tell me what is normal. She said it is up to the individual.. Anyone ever expanded to the max (approx 840cc. ) The muscles are not bothering me half as much as the actual expanders digging into me are..

Sorry for the lengthy rant..

Tracy

01-23-2012, 07:14 PM	#1
twosenuf99 Senior Member Join Date: May 2011 Location: Gloucester City, NJ Posts: 73	Need some help!! Hi ladies It's been forever since I posted but I do try to get on here and stalk the group everyday.. My thoughts are always with you all in this crazy journey of ours.. I am currently doing 5FU, Epirubicin, and, Cytoxin every 3 weeks. I have one left to go on February 13. I am also in the middle of reconstruction ie: getting expanded 120ccs in each "breast" weekly. By my calculations they will be filled to the max in about 3 weeks. Originally the Onc told me I was Er-, PR- and Her2+.Then she said I am Er+ and PR+ along with Her2+ but the er and pr are so low she wasn't giving me the Tamoxifen.. Saw her today before my Chemo tx and she now says even though they are extremely low around 2. something she changed her mind and now will give me the Tamoxifen (even though she believes it won't help)with Herceptin when I am done chemo. She also wants to do 6 weeks daily rads. in 3 different places on my chest, subclavicle and underarm area. My questions or concerns are like most others.. After reading some of the horror stories of Tamoxifen I am not sure what the benefits for me would be compared to the disadvantages.. I also am debating doing rads as after my mastectomy they could not find any disease. She is telling me it is protocol for stage 3c for as aggressive as it was to do it. I am also concerned with the side effects of rads compared to the benefits. I know if I do rads it can come back. If I do not do rads it can come back. She said there are no studies to give her any statistics on my particular cause since after the initial 16 weeks of chemo the 8 tumors and lymph node involvement was gone. Could not even find cancer cells to send to the study I was on. I am not sure what to do as I feel whatever choice I make it may be a bad one. Please help me with your wisdom and experience.. Also on an easier note has anyone ever had the expanders filled 120ccs a week? My ps will not tell me what is normal. She said it is up to the individual.. Anyone ever expanded to the max (approx 840cc. ) The muscles are not bothering me half as much as the actual expanders digging into me are.. Sorry for the lengthy rant.. Tracy __________________ Baseline Mammogram November 2010, found 2 suspicious calcifications (right side). Second Mammogram April 2011, found 2 masses in the right breast, 1 in the lymph node and 1 in the left breast. 3 Biopsies May 11, 2011 Diagnosed right Invasive Ductal Breast Cancer which spread to my lymph node 5-13-2011. Between Stage 2 and 3 with tumors grade III. ER/PR- but Her2neu+++ PET Scan clear Breast MRI showed 2 masses in left, 5 in the right and 2 in the lymph node. Biopsy of left mass benign Joined clinical trial which required second biopsy of one of the right masses Port placed May 27, 2011 Began Chemo (Taxol, Herceptin and Tykerb) on June 1, 2011 - September 12, 2011 Bi-lateral Mastectomy with reconstruction (expanders) October 3, 2011 FEC 12 weeks Radiation 6 weeks Herceptin 8 months finish September 2012 Exchange surgery August 3, 2012 Been NED since October 2011 Lymphedema right arm since Nov 2013