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Old 08-08-2014, 09:30 PM   #8
CoolBreeze
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Join Date: Dec 2009
Posts: 562
Re: Nipple sparing -- risky or safe?

Okay, so I don't know anything about nipple sparing but I would go by what your doctor says as far as relapse goes rather than your friend. So that's a question to ask.

As for a double - here is a study in the Journal Oncology that shows a massive jump in rates of double mastectomy in women with DCIS and early stage invasive cancer.

http://jco.ascopubs.org/content/27/9/1362.full.pdf

This spike has happened despite numerous studies that show that there is no survival benefit for doing this type of surgery.

I wrote a blog post about it here and in that there is also a link to a New York Times article on the subject written this weekend.

http://www.butdoctorihatepink.com/20...st-cancer.html

(My title is copying the times article, don't judge based on that!)

I say that not for you to read my blog but to read the responses from the women who have been on both sides of this situation. It will give you a nice overview. Nobody pushes one thing over another, just women sharing their experiences.

My only warning to you is that mastectomy is not always benign. I had a uni so only removed the cancerous breast. I am not alone when I share the problems I have had: numbness, frozen shoulders three times, loss of function and range of motion in my right arm and chest, back problems, pain since the day of exchange, muscle spasms and an itch that will not go away. The implant is also very uncomfortable, is cold, feels unnatural but that happens to most.

This is, unfortunately, not uncommon. While it doesn't happen to everybody, and may not happen to you, it is a possibility you should be aware of. I would not have believed I could have had all these issues because I was so strong and healthy - but I have. I am very, very grateful I only did a uni because having these problems on both sides - not being able to raise both arms for the rest of my life -that would be very difficult, especially with all that I've been through.

Many women, but not me, have infections and reject the implant. It's really not a benign procedure and it is nothing like enhancement.

The alternative side to that is I didn't get a very nice reconstruction. It looks fine in clothes but not in clothes it is not even. However, evenness is not as important to me as sensation and I at least have feeling in one breast, so I don't mind and honestly, where my cancer was located I was not going to get an even result either way. I lost my infra-mammary fold and that can't be recreated so there would have been no use in removing the other side.

Here is a question to ask your doctor: if you decide to only remove the cancerous breast and decide in a year you decide that you haven't had any issues with function and don't mind the numbness, then can you get a prophy on the other side?

There is the Women's Cancer Right's Act which states a woman is allowed to have surgeries and revisions to try to achieve symmetry but I am unsure how long you have to do it. Can you do it ten years down the road?

Remember, implants are not lifetime devices and have to be replaced so more surgeries are likely no matter what.

If there is no medical reason to remove the healthy breast, then you may have time to make up your mind and decide. Since there is no survival benefit than I think it might be a good way to bridge the gap and wait and see if you are allowed.

And, of course, this is an extremely personal decision. If you have the BRCA gene than you probably should do a prophy, and there are many other reasons why it can be done. I am not telling you which way to turn at all, I am just sharing what happened to me so you can realize it is not the "perky new boobs" you probably have been told you'll get.

Good luck with your decision! *big hugs*
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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.
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