If you are facing a mastectomy or helping a loved one get through it, I can’t stress enough that you need to educate yourself. Lots of different types of resources are available to you online and in your community – you just need to take the time and seek them out.
1. First and foremost, find a SUPPORT GROUP. Whether it’s the traditional kind that meets at the hospital or a community center in your area, an online one such as a FaceBook group or a Message Board, or your surgeons’ former patients (just ask). The stories, experiences, photos, and support that can be found within such a group are invaluable. I personally don’t know anyone who has undergone a mastectomy, so these resources were, and continue to be, critical in helping me understand what I am up against.
- Prophylactic Mastectomy – Facebook group
- Young Previvors – Facebook group
- BRCA Sisterhood – Facebook group
- FacingOurRisk.org – message board
- BreastCancer.org – message board
“The Breast Reconstruction Guidebook by Kathy Steligo is an invaluable resource for anyone undergoing a mastectomy, whether it is in response to a cancer diagnosis or prophylactic. I have yet to come across a resource that has so much of the relevant information in one place – this really is a comprehensive guidebook. I am currently preparing for a prophylactic bilateral mastectomy and have spent many hours online researching the topic. I have been documenting the journey in a blog and after reading this book find that most of what I read elsewhere and wrote on my blog is in this guide. I wish I knew I could just read this book and everything else would be old news!
This guidebook presents all of the pros, cons, potential complications, options, and much more related to mastectomy and breast reconstruction in terms that anyone can understand. It also guides the reader through finding the right surgical team, how to deal with the insurance company, how to handle unsatisfactory results, and even has a section written specifically for friends and family outlining what they can do to help. I wish I found this amazing resource sooner! I highly recommend this guidebook.”
3. Visit some HELPFUL SITES and read all the info about mastectomy and options for breast reconstruction.
- Cancer.org or BreastCancer.org – Whether you have already been diagnosed or are considering mastectomy as a preventative measure, these are great resources.
- FacingOurRisk.org – Already mentioned this one above because of the message board, but there is so much more to this site. In addition to the forum, you can find a photo gallery (password-protected), surgeon directory, local group information, books, and more.
- MyDestiny-US.com – This site has a lot of great information about mastectomy, reconstruction, the BRCA mutations, questions for the surgeons, links to other sites and blogs, etc.
- BreastReconstruction.org and EmbracingMastectomy.com are also really great!
4. Read OTHER WOMEN’S STORIES. Many women blog about their experience. Some write books. Some make YouTube videos. If you don’t feel comfortable engaging a support group (I wasn’t ready to talk to others right away), find a blog or a website of someone who has been there, done that. If you found this blog, you know how. One person’s experience offers a different perspective than general info on a site or in a book. Check the Other Good Reads section of this site for some links.
5. Find a LISTENER. Whether it’s a shrink, someone from the support group, a friend, a video camera, a blog, a plant or a cat – find a buddy that will let you vent when you need to.