upcoming surgery

tobi216

I will be having a unilateral mastectomy in a few weeks and have decided not to have reconstruction.  Believe it or not, the consult with a plastic surgeon changed my mind about proceeding with reconstruction.  I decided I just want to get this cancer out and be ready to heal/recover as quickly as possible and not have a lot of extra surgeries to look forward to in the future!  I stumbled onto this blog the day after consulting with the plastic surgeon and it was a welcome relief and encouragement to hear your stories!  Thanks for sharing them - very little is mentioned in the literature you receive about not going ahead with reconstruction.  So, I'm putting some questions to you all, knowing you've all been through this already and I would value your advice and opinions. 

I know everyone heals differtly, but I would love to hear from anyone who can give me a little information on what recovery was like.  How soon you were able to return to work or regular activity, what forms you were able to wear in those first few weeks and months?  Has everyone had the nerve damage that's been mentioned - if so, was wearing a form or prosthesis too painful and for how long?  Any suggestions on bras or clothing items I should buy ahead of time?  Any comfort items (pillows, etc.) that made the days easier?   When were you fitted for prosthetics or forms?  I've heard that it's important to get a good "fitter" when being sized for bras and prosthetics - any recommendations in the SoCal area?   Thank you for your time.

Erica3681

Hi tobi216,

I had much the same experience as you. I consulted with a plastic surgeon and even scheduled the reconstruction. But my anxiety started going through the roof and I realized that dealing with the cancer was my number one priority. I decided to try living breast-free and knew that I could have delayed reconstruction down the road, when I had finished my cancer treatment and had time to fully research my reconstruction options. I had been scheduled for latissimus dorsi flap reconstruction (prior radiation prevented implants and I was too thin for other flap surgeries). I'm very glad I didn't proceed, as I have since read many accounts of women who had lat flap reconstruction and were left with back and/or chest pain (though some women with lat flaps are happy with their results). I had my bilateral mastectomy in 2006 and have been very happy that I chose not to have reconstruction. I have no plans to pursue delayed recon.

Because, like you, I found it so hard to find information about not having reconstruction after a mastectomy, I decided to create a non-profit website to present non-reconstruction as a positive alternative to reconstruction. The site is called BreastFree.org and includes personal stories and photographs, many contributed by women I met here at breastcancer.org. There's also a section on Preparing for Surgery, which you might find helpful, and lots of information about living breast-free.

Best of luck with your surgery.

Barbara

Outfield

Tobi,

Check out the "new and future flat sister" thread in this forum, started by Bobogirl.  She asked a lot of questions, and the responses give a good idea of usual ranges of recovery times.

I don't think it's possible to do a surgery as major as mastectomy without some nerve damage.  It's a relatively long incision and nerves are everywhere.  On the other hand, we have a lot of variety in how we heal.  

Good luck.

tobi216

I can't thank you enough for creating the breastfree.org site!   Prior to my consult with the plastic surgeon I was 99% sure I would go ahead with immediate reconstruction-tissue expander.  Because I was a good candidate for the trans-abdominal tissue reconstruction (which I was never even considering due to length of surgery and recovery time) it seemed to become the focus of the consult.  When I tried to re-direct the conversation back to immediate reconstruction - the lack of patient satisfaction w/implants was repeated many times along with the other downsides.  I was very focused after that visit to do further research and had not really considered doing no reconstruction at that point.  When I Googled 'prosthesis vs. reconstruction'  I think the breastfree.org link came up first.  It is an awesome site with a lot of information and extremely encouraging to those of us considering our options.  The testimonials were what gave me reassurance and confidence in making my final decision. I will be revisiting the site again this weekend as my surgery date nears.  Thanks to breastfree.org my anxiety level is at a minimum! 

tobi216

Thank you - I appreciate the reply and I will check the thread out this weekend!   

bamboogirl

Erica, I wanted to thank you for creating your website, BreastFree.org. I am having an BMX in 2 weeks and gathered the strength and courage to decline recon after I found your site. The stories are moving and very positive. I look forward to loving and accepting my new flat chest next month. Thank you again ! 

Erica3681

Hi bamboogirl,

I'm really glad you found BreastFree.org helpful. You'll find lots of great support and advice here, too.

I hope your surgery goes well!

crystalphm

I was in the same boat 3 years ago, I was so upset and terrified of the cancer, I did not find BCO for a few months after surgery, but I did find Breastfree.org which prepared me to make the choice to be flat and remain this way. I greatly appreciated all of the information there and I even still look it all over now and then. What a fantastic website!

MaggiPgh

Erica,

Your website is very helpful.  One question...you give so many types of prosthesis, how can I find out what they look like and feel like. Are there stores you can go to?  How do I know which one is right for me, if I cannot touch them. sounds costly. Please help.

MaggiPgh