Having a Prophylactic Double Mastectomy Based on Family History

About 6 years ago, I remember sitting with my doctor discussing how it would be best for me to have additional breast cancer screening since I have a family history of breast cancer.

She put all my information into a basic risk assessment tool online and found that my lifetime risk of developing breast cancer was 62.5% at the time. I remember thinking that was a high percentage, but figured that at least I could do scans every six months and catch it early.

What I didn’t realize was what 6-month surveillance really meant. Alternating a mammogram and MRI every 6 months seemed like an easy feat until almost every other scan showed something that would need to be biopsied weeks later.

The waiting for the biopsy procedures and biopsy results was almost unbearable. I share about those times of emotional and physical pain here: Trusting God in Tough Times | Why Does God Allow Pain?

Biopsies resulted in several benign findings, such as sclerodoma adenosis, PASH, and radial scarring.

Even when nothing showed up in scans, I’d think to myself, “Phew, I’m free from this for 6 more months!” But a couple of weeks before that scan, I’d start to get worried all over again about either finding breast cancer or the drama that would inevitably occur if they stumbled upon another benign finding.

I went to MD Anderson twice a year for preventative care and I even took Tamoxifen, a chemo drug, for 4 months to reduce my risk. The side effects of Tamoxifen proved to be too much, so I stopped taking the drug.

After the Tamoxifen wasn’t an option, I started asking questions about why my risk was so high. I was gene tested and fortunately, my test showed no genetic mutations like BRCA I or II.

However, since my mom is a breast cancer survivor and my dad’s sister is also a breast cancer survivor, this raised my risk level. Also, having extremely dense breast tissue raises one’s risk as well as findings in past biopsies. All of these factors combined gave me a high risk of developing breast cancer.

The average woman’s risk of developing breast cancer is 11% and anything over 20% is considered high risk. My risk assessment after final pathology of my mastectomy came to 70% because of some atypical hyperplasia that never showed up on previous scans. This is well within the same risk range as someone with BRCA I or II gene mutations

I decided I don’t want to just catch breast cancer early; I don’t want to catch it at all.

Most surgeons accept that a woman with a BRCA mutation has the right to get a prophylactic mastectomy. However, I represent a sub-group of high-risk women that do not have a mutation but are still at the same risk level of someone who does. For us, finding a surgeon is a little harder but not impossible.

WHY I CHOSE DIEP FLAP RECONSTRUCTION

Because I have celiac disease, which is autoimmune, I was concerned about my body rejecting implants. I didn’t want to go completely flat, so that left me with the option of using my own tissue.

DIEP Flap reconstruction is breast reconstruction technique where tissue from the lower abdomen is used to replace the original breast tissue. This allows the new breasts to be more natural-looking and your body is much less likely to reject your own tissue than implants. Also, implants need replacing every 10 years or so, but with DIEP flap, I’ll never have a need for future maintenance surgeries.

HOW I FOUND A SURGEON

After doing a lot of research online, I found a breast surgeon who had done well over 1,000 DIEP flap procedures. I saw her before and after gallery and was sold that I wanted Dr. Elisabeth Potter to be my breast surgeon. I called her office and asked what breast surgeons Dr. Potter likes to work with, and the first name that was mentioned was Dr. Julie Sprunt.

Within a few months, I had an appointment with Dr. Sprunt and Dr. Potter on the same day in Austin, Tx. Both of these women are at the top of their field and are brilliant at what they do. I have no doubt that Dr. Potter is not only the best DIEP flap surgeon in Texas, if not the nation. I’m so blessed to have of these amazingly talented and caring surgeons on my team.

My surgery date for my preventative double mastectomy with DIEP flap reconstruction was July 15, 2025. This surgery brought my lifetime breast cancer risk from 70% to 1-5%.

HOW I PREPARED FOR SURGERY

I had an insane amount of anxiety in preparation for this surgery. I was concerned about having complications and also my pain level after DIEP.

Dr. Potter told me about this guided meditation, which was an essential part of mentally preparing me for surgery. This award-winning guided meditation helped me to have such a great surgery outcome and a fast recovery. I also met with a Christian counselor every couple weeks as I was preparing for surgery.

HOW SURGERY ACTUALLY WENT

On July 15, 2025, I had a preventative double mastectomy and DIEP flap reconstruction simultaneously. Because I used Dr. Potter, my surgery was only 5 hours instead of 12-14 hours, which is usually standard. I had all four drains out within one week of my surgery and as I write this at 10 days out, I’m doing really well! It wasn’t nearly as bad as I thought it would be. I was in the hospital for two days and my pain has been well-controlled.

Because of this surgery, I won’t have to live my life 6 months at a time. Also, I don’t have to deal with the reality of a 70% chance of developing breast cancer hanging over my head. I won’t have to endure chemo, radiation, and 10 years of Tamoxifen like my mom did. Most of all, this surgery could have very well saved my life.

I don’t expect everyone to come to the same conclusion as I have. But for me and my family, it’s the right decision. I know this and God has laid a clear path ahead to make it happen.

At 10 days out from surgery, the reality of this decision is still sinking in…

One day in the future, I will look back at this decision and think it was the nicest thing I could have ever done for myself.

Recently, I came across a quote that said, “Maybe God is having you move this mountain to show others it can be moved.”

And today, I was reminded of Matthew 13:31-32:

He replied, “Because you have so little faith. Truly I tell you, if you have faith as small as a mustard seed, you can say to this mountain, ‘Move from here to there,’ and it will move. Nothing will be impossible for you.”

It’s such an encouraging reminder that I even with a little bit of trust, God can move the biggest mountains in life. I hope this experience serves to help someone else going through 6 6-month surveillance.

But I’m so thankful that God’s presence is with me in this process. He has proved to be faithful and has stayed close to me every step of the way. Feel free to ask me any questions below.

Much love,

Karin

4/25/26 – In a couple days, I’m going to have a Phase 2 surgery. That’s the typical protocol as the Phase 2 is a revision surgery to fix details. I wasn’t going to have this surgery, but I recently decided I might regret it later in life if I don’t. I also have a seroma that will possibly be drained in this surgery. More updates to come.