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Old 06-05-2011, 04:59 PM   #20
CoolBreeze
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Join Date: Dec 2009
Posts: 562
Re: Decision Time - Need Advice

It's interesting that they did chemo before surgery for you. I thought they only did that when you are stage III.

Here is the way I look at it. The recurrence and disease free survival are exactly the same whether you do mastectomy and lumpectomy. Also, cancer can and does come back in mastectomy scars; I've known quite a few women this has happened too. They cannot get all breast tissue when they do a mastectomy - they are only reducing risk, not eliminating it. And, statistics show it doesn't matter if you choose breast conserving therapy or not.

Once you take off the breast, there is no putting it back. With lumpectomy, you still have options down the road.

Taking off a breast is no simple thing. Breasts are not useless lumps of flesh, they are part of your body and amputating body parts has life long repercussions. For me, I have lost strength in my right side and I'm also completely numb from cleavage to scapula. I also have had a "phantom" itch for two years that I cannot scratch because it's numb. I am unable to do things such as push ups, or open jars, and that kind of thing. (I did implant reconstruction) I also had a frozen shoulder after my surgery, which - while not life threatening and which will go away - has been unbelievably painful and which has really delayed my recovery. It's been six months now. Sometimes it lasts for 2 years. Assuming I live long enough, I will have to have more breast surgeries. Implants have a ten year lifespan and need to be replaced. You also have to have MRIs regularly.

The ONLY reason I had a mastectomy was because I had multicentric/multifocal cancer. I wanted a lumpectomy but it went before a tumor board and they said no. It was spread throughout the breast with several spots of invasive cancer other than the large one. I fought long and hard to keep the breast but it was not to be. My left one was healthy so I left it alone and I'm glad I did - I can still feel the hugs of children, etc.

Now, that is my opinion and my feelings, and you do what is right for you. I presented my thoughts in case there was something you had not thought of that you would take into consideration. I know somebody said to go with your gut, but I disagree with that. This is a decision with consequences and you need to make it with logic, not feelings. You need to know the statistics and you need to know there are consequences to mastectomy, whether it's weakness and muscle problems due to reconstruction, or the lifelong use of a prosthesis, or questions if you don't.

Most of all, you need to make a decision that is best for you and your life and circumstances based on all the information you can gather. It should be one that you will not regret later. It is a difficult decision and you must make it thoughtfully.

What is right for me or another woman is not right for everybody. I know how hard it is and I wish you the best of luck.
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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.
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