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CoolBreeze · 11-30-2013, 01:29 PM

I didn't read any of the answers but I do want to remind you this is your sister's decision. My understanding is that a lumpectomy and mastectomy have the same recurrance rates but that is up to her doctor to discuss with her, not strangers on the internet.

What I am going to tell you is my own experience with mastectomy. I had no choice but to have MX as I had multi-focal areas of invasive cancer and that calls for Mx always. I had a right Mx with tissue expander and left my left breast alone. Immediately after the surgery to put in the implant, I began having problems. Back problems, shoulder problems....I was diagnosed with frozen shoulder. It was in my right arm, and incredibly painful. It lasted well over a year, with numerous steroid shots to control it. Then it hit my left arm and then my right again. Not only that, but I have had some terrible lower back pain and cannot lie on my stomach (my preferred position). I have a constant itch in the missing breast, to the point where I have scratched holes in my skin. (It's numb so I can't feel it.)

I am Stage IV now with mets to the liver. So it is staying as I can't subject myself to another surgery. But if I had stayed a lower stage, by now I would have taken this implant out and tried without it. Although I think cutting pockets in our chest muscles is something not everybody recovers from anyway.

So, to make a long story short and if I could go back knowing what I know now, there is ZERO chance I would have had the mastectomy. I didn't want it in the first place and have had nothing but trouble since. It is hard enough being stage IV and having to undergo everything that I have: 4 years of chemo, half my liver removed, gamma knife, sepsis, c-diff, without problems with arms and back.

Mastectomies are not benign by any means, for everybody. It is, most definitely, an amputation.

If her doctor says her odds don't change with either surgery, than dont' try to talk her into mastectomy. The most aggressive choice is not always the best choice, it is just the most aggressive.

Good luck to your sister.

11-30-2013, 01:29 PM	#24
CoolBreeze Senior Member Join Date: Dec 2009 Posts: 562	Re: mastectomy versus lumpectomy for HER2 I didn't read any of the answers but I do want to remind you this is your sister's decision. My understanding is that a lumpectomy and mastectomy have the same recurrance rates but that is up to her doctor to discuss with her, not strangers on the internet. What I am going to tell you is my own experience with mastectomy. I had no choice but to have MX as I had multi-focal areas of invasive cancer and that calls for Mx always. I had a right Mx with tissue expander and left my left breast alone. Immediately after the surgery to put in the implant, I began having problems. Back problems, shoulder problems....I was diagnosed with frozen shoulder. It was in my right arm, and incredibly painful. It lasted well over a year, with numerous steroid shots to control it. Then it hit my left arm and then my right again. Not only that, but I have had some terrible lower back pain and cannot lie on my stomach (my preferred position). I have a constant itch in the missing breast, to the point where I have scratched holes in my skin. (It's numb so I can't feel it.) I am Stage IV now with mets to the liver. So it is staying as I can't subject myself to another surgery. But if I had stayed a lower stage, by now I would have taken this implant out and tried without it. Although I think cutting pockets in our chest muscles is something not everybody recovers from anyway. So, to make a long story short and if I could go back knowing what I know now, there is ZERO chance I would have had the mastectomy. I didn't want it in the first place and have had nothing but trouble since. It is hard enough being stage IV and having to undergo everything that I have: 4 years of chemo, half my liver removed, gamma knife, sepsis, c-diff, without problems with arms and back. Mastectomies are not benign by any means, for everybody. It is, most definitely, an amputation. If her doctor says her odds don't change with either surgery, than dont' try to talk her into mastectomy. The most aggressive choice is not always the best choice, it is just the most aggressive. Good luck to your sister. __________________ http://butdoctorihatepink.com 08/17/09 Dx'd. Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS HER2+ ER+/PR- Grade 3, Node Negative 10/20/2009: Right mastectomy, reconstruction with TE 12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy 03/31/2010: Finished chemo 05/01/2010: Began tamoxifen, the worst drug ever 11/18/2010: Reconstruction completed 12/02/2010: Finished herceptin 05/21/2011: Liver Mets. Quit Tamoxifen 06/22/2011: Navelbine/Zometa/Herceptin 10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure! 11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years" 03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa 10/10/2012: Progression continues, started Halaven, along with herceptin and zometa. 01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa 03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta. 04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success! 05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo. 06/07/2013: Fiducial placement for SBRT 07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone 07/25/2013: SBRT (gamma knife) begins 08/01/2013: SBRT completed 08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa 06/18/2014: *** NED!!!!*** continuing with Perjeta, Herceptin, Zometa 01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly. 11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted. 5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean. I’m beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now I’m 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.