I walked into the O.R. super sleepy at 5am, excited at the thought of anesthesia so I could go back to sleep. THAT is how nervous I was for reconstructive surgery after my preventative double mastectomy. Short answer: not at all. I was elated, actually. Thrilled for no more needles, no more tissue expanders, no more personalized Grey’s Anatomy episodes…
The Realities of Reconstructive Surgery
I’ve had implants inside my chest for over a year now and have zero regrets. The upside to all of this: I now have a 1% chance of being diagnosed with breast cancer. The downside? I lost all feeling in my breasts and, well, let’s just say they aren’t the most natural looking things all the time.
I went over the reconstruction discussion with my plastic surgeon time and time again. I was very lucky to have a nipple and skin sparing preventative double mastectomy, meaning that while all of my breast tissue and nerves were removed, I was able to retain some of the old me! While my skin and nipples stayed put, my breast sensation left the building. I’d been told that this would happen, but you can’t adequately prepare yourself for what that actually feels like until it’s upon you. My nipples lack any feeling. I can’t sense the slightest touch on my boobs and oftentimes they feel cold to the fingertips. Even the most simplistic tasks require more thought behind them nowadays – like being careful not to run a brush through my long hair and down my chest or wearing long necklaces that could puncture my skin or revealing my bare chest due to a shifted t-shirt. The best way I can describe it is that numb feeling you get when leaving the dentist in some areas and complete loss of feeling in others. Not ideal, right? Right.
Intimacy After Reconstructive Surgery
“Last night I was with my boyfriend and became extremely self conscious about everything. It wasn’t our first time since my surgery, but it was the first time that I was overwhelmingly aware of every ripple; every shift; the lack of no nipple. My boyfriend told me I was beautiful and simply chucked it up to a bad day. Today I searched the web and found your blog. Thank you, and thank you to the others who have commented. After reading, my boyfriend sent a text, reminding me I am beautiful. You blog reminded me I’m beautiful as well. We all are, no matter what route we choose.”
I frequently receive messages regarding surgery, but this one came into my inbox very recently and stuck with me. I resonated with it. Hard. Dating after a double mastectomy can be really weird. I can tell my story all day for advocacy and awareness reasons, but to tell a potential partner about what to expect is scary – no matter how confident I may be about my decision.
My most recent off-screen relationship has pushed me to be even more vulnerable – just like this blog post topic. Ever since going public with my double mastectomy, I fully believe that sharing stories saves lives and being an open book allows others to not feel so incredibly alone. It’s scary to throw the following portion out there, but I know I’m not the only one feeling this way so here goes nothing…
I was told about the logistical stuff– what to get before surgery, what I’d need after surgery, all the risks and side effects, etc etc etc. While I was aware about the lack of sensation, nobody discussed the self-consciousness I’d face when being intimate with someone for the 1st or 5th or 10th time. How exactly do you tell someone that no, that route of foreplay won’t work on me. Nope, still can’t feel anything there. Hey, easy on the squeeze, please. Yeah, that ripple you see there…that’s my new party trick, hope you like it!
It’s intimidating as hell in the beginning, but learning to communicate in this way is beyond empowering and beneficial to any relationship worth developing. For me, communicating all of this and speaking my truth has only fueled my self love – but I can’t lie to you. Not all days are rainbows and daisies. I have an inner critic that frequently tells me my chest isn’t normal. Then, my inner best friend comes into play and says DIFFERENT is SEXY, and she always wins.
Feeling or no feeling, your partner should find you sexy because you are, not because you’re brave or because they feel an obligation to say certain words to your face. It’s so important that the support and communication continues throughout a relationship, in and out of the bedroom, and on and off screen.
If you’re someone who is super attached to your breasts, losing a body part can feel similar to grief. In the end, we must work through the pain and accept the “new” and healthier versions of ourselves. Suffering, of any kind, connects us all. It unifies humanity in a way that always gives us some kind of common ground – reminding us that we are all beautiful no matter the route we choose.
Reconstructive Surgery with Implants
Reconstructive surgery looks different for everyone. Some choose implant reconstruction while others have tissue flap reconstruction, or using tissue transplanted from another part of your body such as your belly, thigh, or back. I ultimately chose the implant route because generally, this route is an easier surgery and easier recovery. Today I have 500 cc silicone, round, mid-profile sub-pectoral, non-textured implants. Say that 5 times fast, I dare you 🙂
I think it’s so important to speak openly about this topic year-round, but October 17th, Breast Reconstruction Awareness Day, is a timely opportunity to get the convo going, especially about new options like ReSensation.
ReSensation Technique
What it feels like to the woman has been a blind spot in breast surgery. The focus on how breasts look and feel to other people, rather than how they feel to the patient, is largely apparent. The loss of breast sensation isn’t ideal, but there’s a new technique out right now that regenerates severed nerves – all preformed during reconstructive surgery. Gosh I love science.
ReSensation™ is an advancement in breast reconstruction designed to restore sensation after a mastectomy. During a mastectomy, nerves that provide sensation to the breast are cut when breast tissue is removed. This usually leads to numbness and loss of sensation. With ReSensation, surgeons have the ability to connect the nerves that were cut to nerves in the patient’s newly restored breast, allowing the nerves to potentially regenerate over time.
What to know:
- Peripheral nerves are like wires – they transfer signals across a vast network and deliver data from tissues and organs to and from the brain to every part of the body.
- Physical damage to a peripheral nerve, or the inability to properly reconnect peripheral nerves, can result in the loss of sensory feeling or the initiation of pain.
- Free flap reconstruction with ReSensation enables breast surgeons to use allograft nerve tissue to reconnect nerves. This potentially offers sensation to your newly restored breast.
- ReSensation is performed as part of a free flap reconstruction. It can’t be performed during implant reconstruction, as implants do not contain nerves needed to potentially restore sensation.
- The procedure can be performed during a mastectomy (immediate reconstruction) or after a mastectomy (delayed reconstruction).
That’s a lot to take in, but I find this breakthrough beyond fascinating because it can help. In happiness, in sexual arousal, in self-love, in confidence. If you take anything away from this post, take this: we are all beautiful no matter what route we choose.
Oneida Rodriguez says
Wow!! Thank you Lesley for being so strong and for sharing your experience with Double Masectomy! I wish you all the best in life. You are so brave and full of confidence! Every time you smile, you give hope to other women! Keep going! This too shall pass! 🙏🏻❤️🙏🏻🙏🏻🙏🏻
Jo says
I appreciate your words of truth and encouragement. I have breast implants but due to some recent genetic testing at the OB and my Mom and sisters problems with breast cancer, I am thinking about a preventative procedure and now I know to keep the nipples and nerves if possible.
Lisa R says
Great post! 6 years ago, after a breast cancer diagnosis, with 4 rounds of chemo, I elected for a double mastectomy with DIEP flap microsurgery procedure. Not gonna lie, it was hard. The tummy tuck was the hardest part.. the surgery was 9 hrs w two general surgeons and two plastic surgeons delivered the best outcome possible but more than how they look(awesome) or the fact that it was once and done when I woke up, was the fact that I had about 60-70% feeling restored over time through the nerve regeneration. It was worth the grueling prep and long recovery to have that somewhat restored, and would highly recommend it to anyone considering a double mastectomy. I had mine done at PRMA clinic in San Antonio TX and have never regretted it. (You can watch the video on their website for more info on flap options they offer.) I am 6 years cancer free and love my new girls!! 👀
Elise L. says
So uplifting and empowering of all women. Even women, such as myself, who haven’t had reconstructive surgery, can identify with your strong messages of self-love and respect for all women!!! I also love how your Instagram posts are always extremely raw and authentic. I love how you embrace all of your body and provide amazing commentary about not needing a thigh gap to live a fulfilling life. Totally resonated with me and makes me appreciate my curves more! Just keep being you:)
Mandy says
My cousin will be having a double mastectomy on 10/30. I want to be supportive but not intrusive. Can you suggest ways that I can be there for her before and after surgery? I’m not sure what to expect. Thanks
Becki says
Thank you so much for candidly sharing information about prophylactic mastectomy and reconstruction. Your story and your willingness and ability to continue on your travels and fulfilling life has been an inspiration to me on my mastectomy and reconstruction journey.
P.S. I get Areola tattoos in 3 weeks!! 😁
Peggy says
You are such a
Beautiful person Lesley. You are so Brave, and so
Honest. I hope you find an amazing man because
you are an AMAZING 😉 person.
Janie M says
Hey hey!
Im getting ready to get close to the same thing as you, prophylactic double mastectomy with nipple sparing and direct to implant. I’m getting the “ gummy bear” implant, round textured. Thank you for the 411 for after with intimacy. I’ll be honest I didn’t think about that very much. I’m scared and intrigued by the surgery! I have had large breast all my life and am eager to have smaller ones, but still unsure about recovery and what I’ll be feeling after. This has been super helpful for me to prep for the unknown. Thank you!
Victoria Oliver says
Lesley, THANK YOU for writing this. Since my initial comment to you, I’ve been coming into my own. And I’m right there with you…different is sexy! I still have my moments, as we all do about everything, and anything, but I know my left breast didn’t define me. My breast don’t define me. LOVE YOU LOTS!
Melinda says
Leslie,
Hearing about your journey makes me feel less alone. I can’t begin to tell you how thankful I am for you and your willingness to share your story! I found out I had the BRCA1 genetic mutation when I was 28, now at 30 I am finally looking into preventative mastectomy options. Are you considering doing anything about the ovarian side of it? The thought of going through surgical menopause (after kids, of course) is what scares me the most out of all of this. I would love to hear your thoughts on this! Wishing you nothing but the best!
Melinda says
I meant “Lesley”, oops! 🤦♀️
Susan Nies says
I had my double mastectomy in February and have decided to stay flat. I have also just had a hysterectomy to keep as much estrogen out of my body as possible as it was feeding my breast cancer. At this point, we have not been intimate. I never want my husband to see the carnage that is my chest but I also do not want reconstruction. As a result of BRCA1, I had to have all tissue, skin and nipples removed. My husband and I will find our way forward but I believe it will be while I am wearing a t-shirt! Thank you for sharing your story!
Rachel says
Please allow your husband to show you how much he loves you! Do not underestimate how he will react. I am sure he will be so tender and loving. Get pretty new lingerie and show off! You are beautiful Mighty Warrior. Allow your husband to share in your grief and allow him to love you through it. You are Amazing and your body has been through literal hell! Give yourself some grace and your husband. Let him love you! You are Beautiful! YOU GLOW GIRL!!
Priscilla says
I have not had sex with my long term boyfriend since my surgery in 2017. Double Mastectomy Ovaries out. I did a Dflap. I have no interest and He never asked and we Never discuss. Do we still have a relationship?? I still need a filling nipples were done and I need to color in. This is my very very first time sharing to probably no one. Lol. Thanks for reading
Kate says
I hear you and see you. I’m facing the same thing next week. Thanks for sharing. Every story makes me feel less alone.
Rachel says
Let your boyfriend in. Talk to him. Find out what he is thinking. Tell him what’s on your mind, how you feel. You have been through so much!! Be kind to yourself.