Should I get a preventative mastectomy

Deciding whether to have a mastectomy to prevent breast cancer is an absolute journey. It's not something that should be decided lightheartedly. Unfortunately, one person's decision cannot and should not influence another's decision because we all have unique bodies and genetics. However, I think that it is important to hear from other's experiences as part of the informed decision process. I will tell you my journey because at the time of my decision I wished that I could have talked to someone who had made a similar decision. 

In 2012, I woke up one morning and discovered a small lump while doing a self breast exam...something I rarely did but that morning something prompted me to do it. To make a long story short, I ended up at the St. Luke's High Risk Breast Clinic as my sister had recently gone through Stage IV breast cancer treatment. What I found turned out to be benign; but, in the process of all the scans I found out that I had highly dense and cystic breasts which meant mammographies and even MRIs might not catch a malignancy. From 2012 thru 2018, I had regular visits to the High Risk Breast Clinic with mammography, ultrasound, and a yearly MRI. I had several biopsies done throughout this time and had an intraductal papilloma removed. In 2017, the results of my MRI indicated that it would be beneficial for me to have an MRI every 6 months vs every 12 months. It was at this point that I seriously considered a double mastectomy. I had thought about it in the past but this time was different. I felt like I was bidding my time before a cancer diagnosis. I had my sister, who was thankfully almost 10 years out from her cancer treatment, give me her advice after reviewing my results. I was all over the place with my decision. Was I being too radical with the results of my MRI? Should I just hedge my bets and keep my breasts? What's the big deal about a mastectomy, it's not like I'd be losing much (I was an A cup). In the end, I decided to have a nipple sparing double mastectomy with implant reconstruction in January 2018. I would never know for sure whether or not cancer would have developed in my breasts but in the end I determined that with the density and cystic nature of the my tissue and my sister's breast cancer history that I was better off without them. Have I had regrets? Sure. I don't think you cannot ever ask "but what if I would have never developed breast cancer?" Unfortunately, that's a question without an answer and you eventually stop asking it. I am thankful that I have reduced my risk of breast cancer as much that I can. I am thankful for my surgeons Drs. Neblock-Beirne and Spencer Egan and their wonderful staff. I am thankful for the care and guidance of Donna O'Reilly RN WHNP at the St. Luke's High Risk Breast Clinic who left no stones unturned when looking for suspicious lumps and never forced the idea of a prophylactic mastectomy. In the end, my implants and me were not a perfect match so in 2022 I decided to have an explant. So now I am flatty unless I decide to wear a prosthetic in my bra. And you know, it's actually kind of freeing! And that's a whole different journey! In the end, I think you just kind of know when it's time. When you've had enough with the scanning and prodding and uncertainty. There is life without breast tissue. You are more than your cup size! I'll be praying for you in your decision making. 

Thank you so much for sharing your personal journey.  Your story is inspiring. I appreciate how carefully you considered all the factors before making your decision to move forward with surgery.  Something I often fail to do!

What resonates most with me most is how you mentioned wishing you had spoken with others going through similar decisions before making yours. That is great advice.  I will continue to have these conversations before I make my final decision.  This is one of the reasons I love this website!!  It will likely be on ongoing analysis until I finally decide the time is right.

It sounds like you made the right choice for yourself, and I’m happy that you have reduced your risk of breast cancer. My sister had a similar experience with multiple false positives, and knowing what she does now, she would make the same decision again. Thank you for being so open.  It makes a difference to hear about your journey! 

Hi there ladies,

I second that it is extremely important to speak with others when considering a prophylactic mastectomy. I thought I read every single article online prior to getting mine and as it turns out, I had barely turned over a stone.
so here’s my story… My youngest sister was diagnosed with triple negative breast cancer at the age of 31. She was the cherry on top, throwing my risk to almost 40%. Myself and all siblings were tested for a genetic mutation all of which came back negative. My genetic counselor told me that Sometimes you just have to apply common sense. What she meant by that was not all gene mutations have been discovered and when looking at my families history, it is clear that there was a pattern.

To be totally transparent, I have anxiety, and when my sister got sick, it catapulted into a whole new level. It didn’t help that when I went in for my mammogram, I was given a birad-4 and had to go through all of the same steps as my sister, less than a month after her diagnosis. The fear of getting the disease personally outweighed what I was giving up. 
my initial surgery was at KU med Center. It was nothing short of a disaster. I was sent home a few hours after surgery with incredibly thin skin and the beginnings of necrosis. I was not offered a hyperbaric chamber even though the hospital has one. Rather, I was scheduled for surgery six days after my original surgery to explant and to remove nipples and areolas. I felt like I was chasing down doctors and even went to the ER twice to try and be seen. My other sister called a wound care specialist outside of KU med who traded me with DMSO which you can buy on Amazon or at tractor supply and help bring blood flow back to my nipples and areolas. This cream worked substantially better than anything. I was given at the hospital. It is used in hospitals in Nebraska and in California. I was eventually put in hyperbaric chamber for a few hours a day for three weeks after kicking and screaming at KU. 
I ended up developing a contracture which I fully believe has to do with the months of healing as a result of my poor surgery.

I would never go back to KU for that surgery and found a wonderful hospital in New Orleans known as the center for restorative breast care. The surgeons are micro surgeons and are leading experts on breast related surgeries. My experience was a 100 out of 10.  I not only felt better, but my results are better. Fun fact: I met a wonderful woman through the bra couture event that had my same doctor in New Orleans. I have implants and she had the diep procedure. 

If you are planning to stay local for this procedure I have heard wonderful things (and seen fantastic results) from Dr. Spencer Eagan and also  the doctors at Monarch plastic surgery. Please note, that Spencer Eagan Will do nipple sparing and monarch will not.

I know implants aren’t for everybody, but I have had a great experience with them post surgery in New Orleans.

For anybody reading this, I’m so sorry that it’s come to the point of having to make this decision, but I can promise you life on the other side of a prophy is just as sweet. For me personally it’s better because the paranoia around the disease has been eliminated. I am an open book and would be happy to speak to anyone about the prophylactic mastectomy. Here’s my cell 913-754-6433

We were also informed that our family may carry a gene mutation that hasn’t been identified yet. My mother and her three sisters had breast cancer six times between the 4 of them.  They all tested negative for the known cancer genes. Interestingly, they each chose different treatment paths: lumpectomies, mastectomies, and chemotherapy. Today, all of them are cancer-free and in their 80s.

I enjoy learning about the different paths people take and know that learning about your journey will help me and others make thoughtful and informed decisions.  

This is a tough decision.  I would try to educate yourself around your whole body health first.  A DNA blood test might show you what risk you have, a test I recommend is SNIP Nutrigenomics which will also give you the supplements to support your specific genes. My other recommendation would be to meet with an integrative doctor to review your specific risks, doctorlucas on Instagram used to work at Riordan Integrative Oncology in Overland Park and still see patients privately. I see a Dr in St. Louis- Dr. Christine Salter who manages my whole body health and offers thermography which can show inflammation in the body which can be a pre-cursor to cancer.  There are other places in KC that offer thermography as well. These Drs can also look at your whole body health and can help determine your risks. These options will cost money so I am not sure about what you are able to afford.  I would also look at drjennsimmons on instagram.  She is a former breast cancer surgeon who then had breast cancer and now does functional medicine around breast health.  She has a great book out The Smart Women's Guide to Breast Cancer.  In the book she talks about preventative measures.  I am personally doing the items I listed above to minimize my risk of my breast cancer returning and I wish I would have done some of them before I was diagnosed. I will be praying for you as you discern your next steps. 

I’m 4 weeks out from my preventative mastectomy with DIEP. Not one regret. Insurance covered everything. Always here to answer questions if you have any. It took me 6 years to finally do it.