Our mastectomy guide

✨ We are happy to launch our new guide on preventive mastectomy, created by patients for patients, with input from our Scientific Committee ✨

Over the past 7 months, a group of incredible women who have already undergone or are considering a preventive mastectomy came together to co-create this precious guide. Their goal? To share their experiences, insights and feelings with those who are considering to embark on a similar journey.

The guide “Preventive mastectomy: how to prepare and what to expect” is now available! This guide is a practical resource, filled with insights and shared experiences, designed to help you prepare and understand what to expect during your journey.

Whether you are considering a preventive mastectomy or just want to learn more, this guide is here to support you in the long-term.

✨ Testimonials ✨

Rasoanirina, 41 years

Finding information and associations related to the BRCA genetic mutation and preventive surgery was very complicated when I made my decision. It wasn’t enough for me, because I needed to hear from other women in my situation, to exchange ideas, to anticipate each stage. It’s an emotional rollercoaster, with questions galore and moments of doubt.

I found my own journey in this well-documented guide, with very useful links. Preventive mastectomy is a very personal process. For me, taking this route was more challenging than I had imagined. This guide is reassuring. It will help other women to access information, consider several possibilities or not, make a free and informed choice and prepare to take the plunge.

As far as I’m concerned, it’s a relief, I’m reborn.

Yasmine

I had my first mastectomy following a diagnosis of breast cancer in February 2024, and following the discovery of my genetic mutation I decided to have a preventive mastectomy of the other breast as well, with prostheses on both sides, in September 2024. 

Mastectomy can be frightening, especially because it seems unknown and brutal. The reality isn’t quite so daunting nowadays, and I had two very successful operations. This guide is very useful for preparing for the operation and its after-effects. The reconstructions on offer today are very beautiful and you can really learn to love your new breasts. I was also able to resume all my physical activities (jogging, tennis, weight training) quickly after the operation, so I’d also like to reassure sportswomen that a mastectomy with a prosthesis is not a barrier to activity, even intense activity!

Mathilde, 28 years old

In a few weeks’ time, I’m going to take an important step: having a preventive mastectomy. When you embark on such a personal and sometimes trying process, it’s easy to feel alone when faced with a multitude of questions. The guide is there to reassure us, with concrete answers based on real-life experience.

Everyone goes through this process differently, and the guide helped me to anticipate practical aspects that I hadn’t even thought of or been told about (particularly the administrative aspects, which aren’t my cup of tea, the checklist, the post-op advice, etc.). It offers a compass in the unknown and helps to prepare the mind and heart a little better for this decisive stage.

Beyond the practical considerations, it deals sensitively with subjects such as self-image, reconstruction and the emotional upheaval that accompanies this process, both before and after the operation. By opening up a space where these reflections are not only possible but also legitimate, he has given back to my feelings all their importance.

Milica, 26 years old

Facing the reality of carrying the BRCA1 gene mutation and losing my mother to breast cancer drove me into making the life-changing decision to undergo a double mastectomy at the age of 25. This guide offers the essential knowledge and support that I wish I had received during that time. I believe it will empower others to make informed choices about their health and give them a sense of control during an incredibly challenging time.

Martina, 30 years old

I underwent a preventive mastectomy with immediate prosthetic reconstruction in March 2024. I decided to have this operation as soon as I found out I was a BRCA1 mutation carrier in 2018. It took me about 5 years to find the right time, between finishing my studies, starting my career and a new love affair. The search for information wasn’t easy. I drew here and there from various foreign sources, but I was missing a place where all the information was concentrated.

This guide, written with many other patients, reflects everything I would have wanted to know before my operation. It is a gift that we offer from the bottom of our hearts to all those who are going to undergo or are considering undergoing this operation. This guide, along with our association’s BRCA+ buddy programme, is there to remind you that ‘you are not alone’!

Stéphanie

I come from a family heavily affected by breast cancer.  In February 2022, my mum, who was 72 at the time, decided to take the test to find out whether my brother and I were at risk of inheriting the family’s well-known gene… My mum has not had cancer and is monitored by MRI/Mammogram every 6 months.

My name is Stéphanie and I’m 45 years old with a 15-year-old daughter.  I’m in a couple.

I was diagnosed with BRCA2 in July 2022.  Immediately afterwards, I had a mammogram (to reassure myself) and then, bingo, a lesion… which turned out to be high-grade ductal carcinoma in situ. I quickly underwent an adnexectomy and mastectomy of the affected breast.  In February 2023, I said goodbye to my second breast and also received my definitive prostheses. I took this operation as an opportunity… ‘Life or a pair of breasts’, the choice was quickly made for me.

If there’s one little thing that has helped me accept my scars, it’s that they’re sometimes ugly, sometimes not so ugly, depending on my mood…. I took a lot of photos in hidden mode on my iPhone before and after the operation. When I had the impression that my scars were ugly… hop hop, a little back in the photos and finally it was less and less ugly….until today 1.5 years later when I continue.

I still haven’t made up my mind about reconstructing the areola with a 3D tattoo… so, while I’m waiting for my final decision, I bought some decal tattoos online, in the shape of 3D nipples and extremely well done!

To get through this adventure, I got in touch on FB with two girls from my region, and we helped each other out with photos of our scars… it’s also really good to talk to someone who knows….

That’s it, now it’s over! But I’m happy to share my experience with other people who have the same problem as me… and who have to go through these complicated stages.

Alessandra, 34 years

Making up my mind as to whether undergoing a mastectomy with reconstruction was not easy. Thanks to this guide, which builds upon the real-life experiences of patients, I could anticipate what to expect from the surgery and the post-operatory phase. The information provided allowed me to better engage with healthcare professionals and make truly informed decisions concerning my health. This guide has been a truly helpful and empowering instrument for me, and I recommend any person considering a mastectomy to check it out.