We have another wonderful guest blogger for you today. We're delighted to introduce you to the lovely Gabbie. Gabbie is a previvor who has been blogging about her experience of having a double mastectomy during a pandemic and living flat.
Gabbie sadly lost her mum to breast cancer; Gabbie was 19 and her mum was only 45. Years later, Gabbie underwent genetic testing and discovered she has a BRCA2 mutation. Gabbie has written so beautifully and movingly about her experiences in her blog thebooblesswonder.wordpress.com. We wholeheartedly encourage you to check it out. You can also find Gabbie on Instagram @thebooblesswonder.
Gabbie has written for us today about her decision not to have reconstruction surgery. Take it away, Gabbie:
"As soon as I heard I had a BRCA2 mutation, I knew I wanted a preventative double mastectomy. I had just turned 34 and was about to give birth to my second child. I couldn’t bear the thought of dying of breast cancer, like my mum had, and leaving behind my children. For me, the decision was easy: remove the breasts, reduce the risk.
But did I want breast reconstruction? That was trickier.
I have always felt fairly comfortable in my body. Fairly. Like most of us millennials who grew up in the nineties era of photoshopped models, I can’t help but carry around a mental list of my alleged physical flaws. Too short. Too white. Too hairy! Still, generally, I liked the way I look. Even after two kids and the permanent changes they had wrought on my body. Stretchmarks. Split abs. C-section scar. Wrinkly belly. After nearly two years of breastfeeding, my breasts in particular were unrecognisable. Deflated. But could I live without any breasts at all?
Right from the start, my gut instinct was that I wanted to be flat. But I also knew this decision was too important to make by instinct alone: I needed to consider every available option, and make an educated choice. I carried out a lot of research on different types of reconstruction. A lot. I read books, scientific articles, blogs of personal experiences. I joined multiple Facebook groups. I introduced myself, asked questions. Many, many generous women sent me pictures of their different surgical results, so that I could see what they looked like and consider whether I would want that for myself. For a while, my phone gallery was chock-a-block with boobs!
There seemed to be so many possibilities for reconstruction. Using my own tissue, using implants, using a combination of both. Saving my nipples or removing them. And so many potential complications! Rippling, rotation, necrosis. I was overwhelmed with information, fighting my way through it, trying to weigh everything up. But amid it all, I kept coming back to the idea of being flat. Turning it over in my mind, like a smooth stone. It was a calming idea, I found. As a surgery, it carried the least risk. Had the shortest recovery time. And I felt like it was the choice that would be truest to me.
When I met with the surgeon, I told her I was seriously leaning towards not reconstructing. Nevertheless, I asked her what she would suggest for me if she were to reconstruct. Not every reconstruction surgery is suitable for every woman, and I felt it would make my decision clearer if I knew which options were actually on the table.
The surgeon assessed me carefully, looking first at my breasts and then also at my body, for sites where she could potentially harvest tissue. As it turned out, my options for reconstruction were limited because of my body type – I am quite petite, with low body fat. I didn’t have enough tissue for DIEP-flap reconstruction, where part of your tummy is used to create new breasts. I could have an LD-flap reconstruction, where your shoulder tissue and muscle is used, but my surgeon said that without adding implants to boost the results, I would find them disappointing. My best option was probably to have a direct-to-implant reconstruction.
This pretty much decided me. I was certain I didn’t want implants. While I thought they looked incredible in other women’s reconstructions, I wasn’t open to the additional risks they posed for complications, however small those risks were. I am naturally very risk-averse. A born worrier. I knew that if I put implants into my body, I would be fretting about them for the rest of my life. And I just didn’t want to spend any more time fretting about my boobs. This mastectomy was supposed to be deducting worry from my life, not adding to it!
Ultimately, I decided to go with my gut and not reconstruct. It felt right. That’s not to say I wasn’t frightened about it – there was fear there, for sure. Not just about the surgery itself, but about afterwards. What I would look like. How people would react. How I would feel about myself. Would I still like the way I looked, after my breasts were gone? Would I still feel sexy? Would I get mistaken for a twelve-year-old boy?!
Then, with less than a month to go until my surgery, it was cancelled due to Covid-19. This was a major blow. I had really geared myself up psychologically, and to have the surgery whipped away when it had been in arm’s reach was so distressing. I was terrified it would be put on hold indefinitely, that I might develop breast cancer before preventative surgery started up again.
As it turned out, I was lucky. I live in an area that wasn’t hit hard by the pandemic, and my surgeon called me in to have my surgery the moment she could, in the first week of June. I’ll be honest: even on the journey into hospital, I was still worrying a little bit about whether I should have asked for a reconstruction. But the pandemic had crystallised things for me: the crucial thing was that the boobs, and the risk they posed to me, were gone.
I had to go alone to the hospital, due to strict Covid rules. I was fizzing with nerves, but kept myself calm by bantering with my nurse as I waited to be called to the operating theatre.
When I woke up, I was surprised by the lack of pain. I was groggy, but comfortable. It wasn’t long before I was able to get out of bed and get dressed to go home. As I removed my hospital gown, I decided to walk into the bathroom and look in the mirror. The moment I saw myself, I was so relieved. I knew I’d made the right decision for me. Being flat looked fine. I didn’t look freakish or boyish, or any of the things I had worried about. I just looked like myself.
I’ve been living flat for three months now. I’m having fun working out what clothes I can still wear (spoiler: most of them!) and sharing my journey on my Instagram account @thebooblesswonder to help other flatties and prospective flatties. I love being part of this club of brave, beautiful and individual women, all rocking their foobs or uniboob or no boobs at all."
Thank you so much for your wonderful blog, Gabbie, and for continuing to share your story and support other women within this community.
Hello everyone! Please extend a warm welcome to our latest guest blogger.
Gina has written a wonderfully insightful blog for us today about her experiences of having a single mastectomy with immediate reconstruction and the resources she found helpful in reaching decisions about what was right for her.
Here's Gina's story:
"My name is Gina Davidson, I'm 53 and I live in Northumberland. I moved north 23 years ago; a decision my husband and I made when we were expecting our first child as his family are based up here. I love the culture, the beautiful coast line, the ruggedness of the wide open spaces and it is the least densely populated county in the country - which suits me just fine!
My husband and I have 4 children; now aged 23, 22, 20 and 19. They are my world and give me a reason to stay positive.
I work full time for the local authority, ensuring children and young people maximise their opportunities for education. I am currently not working though as I am recovering from surgery - I have had my partially reconstructed breast removed and I have chosen to remain flat.
I was diagnosed with breast cancer in May 2019 and had a single mastectomy with immediate reconstruction. I hated the way it looked, the way it felt and the way it made me feel.
At the time of diagnosis, all the options for reconstruction were laid out for me and no discussion was had about the possibility that I may choose to be flat - who would choose that when surgery has come such a long way?
But I knew, as soon as I came round from the anaesthetic, that I had made the wrong decision.
After many many meetings with my surgeon and health psychologist - they finally agreed that to remove it was best for ME. I was due to have this surgery in May but because of COVID 19 it was postponed.
It was then that I started researching and looking for others experiences and opinions. Whilst I know many women who have been through breast cancer, most had had a lumpectomy or had had reconstruction surgery ( along with all the other stuff ie radiotherapy and chemotherapy) and were completely happy with the results of their surgery. But, although these women were wonderfully supportive, I didn't feel that I knew anyone who was struggling in quite the same way as me. I took to social media and found many supportive communities out there and yes it was ok to feel the things I was feeling and it was ok to choose to be flat!
@FlatFriendsUK is an amazing group that wholly supports women without reconstruction with lots of lovely ladies sharing experiences and anecdotes so that women can come together to talk about the practical and emotional issues related to living flat. I heard from another group about 'in your pocket' - a phrase that signifies empathy - I absolutely love that phrase.
@thetittygritty, who fronts the #changeandcheck campaign, has many supportive followers and she hosts live discussions about all sorts of cancer related issues in an extremely safe environment with lots of humour thrown in for good measure.
Through these communities, I have really improved my awareness and knowledge of what was happening to my body and knowing there were others out there like me boosted my confidence to start doing guest blogs and I was even interviewed for the Lorraine show (my 30 minute interview was cut down to just 30 seconds haha!)
Another community that has really been inspirational to me is @MastectomyNetwork founded by @mastectomyjay. Her 'Become Visible' campaign that ran in October for Breast Cancer Awareness month, was devoted to increase the awareness of ladies with a mastectomy and to give us a voice and a platform to share our experiences. It has been fascinating to learn, through this community, of the stigmas we live with imposed on us by society; we should look a certain way as women.
The Become Visible campaign involved courageous women sharing photos of their scars on social media. No names or faces were used. Unbelievably, some of these were taken down as they went against 'community guidelines' on nudity and sexual activity.
These images are not sexual at all - they are powerful and inspiring. I featured in one one of them - it was incredibly liberating - no one knows what is going on under our clothes but these photos made us visible.
For the first time in over 18 months, I am beginning to learn to love me again - to feel confident and sexy. With just 1 boob. Today I was at the hospital yet again to get my foob. I don't feel I need to wear it as I am quite happy as I am but I feel I need the option in certain situations, so that others don't feel awkward around me. Some don't understand that when I have elected to be flat, why do I want a prosthesis - I cannot explain but I just do.
I have posted a lot on social media sites about my journey, which after today, I feel is finally coming to the end ( disregarding horrible hormone therapy for ........... years and 6 monthly check ups with my oncologist ). Some have commented on my posts or sent me private messages and if just 1 person is helped through this then my experience will be a slightly more positive one. I will continue to fund raise for Breast Cancer Now and will constantly shout about #changeandcheck.
Cancer no longer defines me like it did, but I will always be a BC survivor and now I wear my scars with pride - a badge of honour so to speak - a statement to myself that I can overcome and thrive. I will continue to support others by making sure women feel supported and have a voice to make decisions about their treatment that can be life changing.
As an end to this, this is the 3rd guest blog I have written ( the others can be read on my Instagram page: @ginalouisedavidson). This one is very different to my last ones as I am in a very differnt place both mentally and physically right now - thanks to the support of family, friends and the whole BC community. No one is alone x"
Thank you so much for sharing your story with us today, Gina, and for sharing these incredible resources which have been (and continue to be) so valuable to so many.
Hello everyone and welcome to our next wonderful guest blog!
Today’s blog is written by the lovely Casey.
Casey is 33 years old and BRCA1+. She had a prophylactic total hysterectomy on 26th May 2020 and a prophylactic bilateral mastectomy without reconstruction on 30th June 2020.
Casey’s mission is to help normalise flat closure among previvors and young women, as well as to inspire the flat-chested among us with outfit ideas as she “shops her closet” post-op.
Casey has always loved fashion and clothes and having no boobs has presented a fun new challenge for her as she gets dressed each day.
Casey says that she is a beach girl through and through. She lives with her husband and three kids in St. Petersburg, FL, right near the Gulf of Mexico.She loves paddleboarding, reading NYT bestsellers, making art (collage mostly), and drinking iced coffee on road trips with her family.
Casey would love to connect with you all on Instagram @theflattiecloset!
Here’s Casey’s story in her own words:
“I have a hard time wearing high heels because I feel like I’m lying about my height. I’ve only ever dyed my hair with semi-permanent dye because I’m happy living with my natural hair color. I never liked the idea of push-up bras because they felt a little dishonest. Heck, I didn’t even get french tips for my wedding (all the rage when I got married) because I rarely painted my nails and I wanted to present myself accurately.
Now that I write that all out, I’m realizing how completely neurotic I sound. But stick with me! The point of these bizarre confessions is this: I like feeling like the person that I was made to be. Celebrating my unique genetic makeup. Being the one and only Casey. Being my true self (cue the Disney ballad).
So: when a BRCA1 gene mutation reared its ugly head and I needed to do something about it, I wanted to simply morph into a new, natural version of me: a girl who was losing her boobs in an effort to prevent cancer, and gaining some pretty badass scars in the process. In fact, I barely even gave implants the time of day. I knew in my heart of hearts that I wanted to go flat and stay flat. That might sound pretty crazy to most women my age, and I get it. I basically turned down a boob job. And believe me, after breastfeeding three babies, my chest could have used the revitalization. But in the end, I had to be true to who I am, and that meant opting out of further reconstructive surgery. Just scars, just flat, just my skin on my ribs.
I knew that women went flat – I’d seen information online that indicated it was an option post-mastectomy. But when I went to search the all-knowing Google, all I found was very limited information, some clinical photos of scars, and a few forum accounts of breast cancer survivors who had gone flat. To be honest, I didn’t feel like I fit in. I wasn’t a breast cancer survivor, I wasn’t middle-aged; I was “just” a previvor in her 30s.
I started to wonder if there really was anyone else out there like me. Did women actually just walk around and go to the grocery store flat? Were they self-conscious at all? Would I regret my decision? Would it be good to get a prosthesis? How would clothes fit? Could I still wear what was in my closet? What did not having breasts feel like? How would my brain process not having boobs anymore?
The questions kept coming. But my biggest question was: where were the flatties? Specifically, where were the previvor flatties?
I turned to Instagram, and began searching all kinds of flat hashtags. Once I’d waded through the photos posted by owners of Flat-Coated Retrievers (yeah, the main “flattie” hashtag is co-opted by dogs – face palm), I started to get somewhere. I found a small army of amazing women to follow, but I also began to learn that flat closure after a mastectomy was an option that had been fought for for years by a crusade of brave individuals. This group of women had been campaigning, dealing with botched surgeries, picketing for their rights, and advocating for all women to get the surgery results they desired. Going flat was a bigger deal than I initially realized – it didn’t used to be such a simple, easy decision to make.
It’s because of these women that my breast surgeon didn’t flinch when I asked her for a flat closure. She was aware because this group of women had fought to make doctors like her aware, and for that I am so very grateful. Not only did I find the flatties, but I found that those flatties were beautiful and badass.
I’m now proud to join the crew as a newbie, adding my voice to the mix, sharing my love of fashion, and writing honestly about life as a flat previvor. I am still slowly trying to find more women who are previvors like me who have chosen to go flat – if you are one, give me a shout! We seem to be few and far between, and that’s one of the main reasons I started my Instagram account – I want to connect with you!
I want to be able to talk about what life looks like for those of us who haven’t fought cancer, but still need to fight genetic mutations. I want to showcase what clothes look like on a flat chest, and encourage women considering a flat closure that being fashionable is still an option. I want flatties and potential flatties to know that life can be good even without lady parts; that we are free to be ourselves, no matter what form that takes.
And I especially want previvor flatties to know that their stories are valid and important, and they are not alone.”
Thank you so much, Casey. We love Casey’s mission to connect with and support other previvor flatties.
Like Casey, we are so passionate about doing what we can to ensure that you feel empowered and confident and that no woman in this community feels isolated and alone.
It’s time for another fabulous guest blog!
Today we are delighted to introduce Kari.
Kari describes herself as a farm girl from Minnesota who now lives in the countryside in Wisconsin with her husband, two kids (ages 12 and 15), and her dog, Lucky.
Kari is a high school chemistry teacher and will shortly be starting her 21st year of teaching! Kari enjoys lazy lake days at her family’s cabin, reading, and spending time with those she loves.
You can find Kari on Instagram at @kekuhl
Kari has written about her experiences last year following her diagnosis. Here is Kari’s story:
“Life sure can turn on a dime and test you in ways you never expected.
Last year, 2019, was the year I never expected to have thrown at me, at least not yet. I was 43 and school was out for the summer; I’m a high school chemistry teacher. I was looking forward to lake days and playing chaperone to my two kids, ages 11 and 14. Instead, I spent the majority of the summer sitting in doctors’ offices, having biopsies and other myriad of tests, and finally the chemo chair. Oh, and let’s not forget about the 3 night stint in the hospital for a pretty bad deep vein thrombosis in my left arm.
The whole ordeal actually started in February. My husband found a lump in my right breast (yes, you can go down THAT road with assumptions!). He’s a family medicine physician and was able to get me in to see my doctor that morning and then an appointment that afternoon for an ultrasound. Luckily, it turned out to be a cyst. Fast forward 4 months. It’s now the end of June and I made the five hour trek with the kids to my mom and dad’s house for the weekend to celebrate my dad finishing chemo for bladder cancer. On the way, I started to get very intense breast pain and swelling. This was unlike anything I’d ever experienced. It was painful to move my arm and I couldn’t sleep, I assumed it was due to the cyst getting larger and having my period. A few days later, the pain and swelling began to subside, but I decided to have it checked out anyway, thinking I would need to get the cyst aspirated. My annual mammogram was due in a month, but I really didn’t want to wait. It’s a good thing I didn’t.
This time, as I sat in the waiting room of the Breast Center, I was much less anxious. After all, in my mind I already knew what it was. It turned out I was wrong. The cyst was indeed much larger and needed to be aspirated, but next to it was another mass that hadn’t been there in February, and it was not another cyst.
Two weeks later, I had 8mL of fluid drained from the cyst and the other mass biopsied. The next eight days were excruciating. I got the phone call the following day as I was in parking lot of our grocery store. I had triple negative invasive ductal carcinoma. I had zero risk factors but somehow cancer chose me.
Things happened so quickly I couldn’t breathe. It was like I was in a dream. I had a consult with a surgeon, a BRCA test (which was negative), an MRI, another biopsy for another mass that showed up on the MRI, my port-a-cath placed, a consult with oncology, a PET scan, and finally my first chemotherapy. Oh, I also had to tell my work I would not be returning to school that fall to teach.
Being an easygoing person, I had no idea what anxiety was until then. It was almost debilitating. Once I started chemo, it subsided some because I was actively doing something, but all I could think about was cancer. What if I died? How would my kids survive that? How would it affect my husband? What about my parents? I couldn’t sleep, had a panic attack while driving, and was so weak from the stress.
Miraculously, the chemo did not make me sick at all. That was about the only thing that seemed to be a bright spot. The anxiety kind of came to a head in August when I was in the hospital with a DVT, a deep vein thrombosis (blood clot), which was induced by my port. I spent 3 days in ICU being treated, and when they moved me to a regular medical floor, I finally broke down from the stress and anxiety when a nurse from interventional radiology happened to stop in to check on me. The poor guy. He had to listen to my blubbering and crying for 45 minutes. The next day I was finally on-board with taking something to help me out.
After this, things improved. I wasn’t sick from chemo, but I was horribly fatigued until I finished the first course (8 weeks of Adriamycin and cyclophosphamide). Once I started 10 weeks of taxol I bounced back and was able to go back to teaching 4 days a week, with chemo every Friday. I made it my mission to teach my students about how I was navigating cancer and how the treatments worked. The teacher became the student on Fridays, and then became the teacher again on Monday.
My hope is that my experience can show my students that when they are thrust into the cancer world at some point, either for themselves or a loved one, they’ll know that there is a light at the end of the tunnel.
I also learned a few things along the way that were not related to science. I found I had a far greater support system than I could’ve imagined.
My good friend, Tami, was there every day. She set up a Relay for Life team in my honor and also set up a meal train. She was with me for my PET scan and my first chemo. She came over when I couldn’t stand to be alone.
My kids, despite their own fears, were tough and resilient. My husband was steadfast, a calming voice of reason, and beyond supportive.
My dad, who had just gone through his own bout with cancer, made so many trips to be my babysitter I lost count. He was who I called when I needed someone to tell me I was thinking crazy thoughts.
I also learned that I’m a tough cookie and a positive outlook makes all the difference. I may not be able to change my circumstances, but I sure can choose how I react to them. It’s also ok to ask for help, both from others and from anti-anxiety meds. That was a tough pill to swallow.
Now it’s 2020 and a year later. I endured 20 weeks of chemo, a single mastectomy with no reconstruction, the removal of three lymph nodes (all of which were negative for cancer), and two other stints in the hospital for a DVT. Yes, two. I got another one five days after surgery. But here I am with hair growing back and, despite COVID, the excitement of a new school year because this year I get to go back on day one.
Cancer sucks. It ruled my thoughts and emotions for over six months. But it’s not getting any more of my energy.”
Thank you, Kari, for talking so openly about everything you have been through. We agree with you; you’re one tough cookie!