My Reconstruction Journey

My first round of reconstruction happened at the same time I had a prophylactic mastectomy. For those who do not know, this is a mastectomy by choice in order to prevent breast cancer due to a BRCA1 diagnosis. After losing my mother at the age of sixty to ovarian cancer, and watching my sister go through stage three breast cancer (with three kids) I wasn't taking any chances. Having a significant family history and being BRCA1 positive put me at very high risk of developing breast cancer in the future. I consulted with a breast surgeon who upon examining me commented "It's a shame as you have such lovely breasts". Mortified by his comment I stormed out to my car. Regrettably, I had not brought my husband to that visit being the independent person that I am. I sought out a new surgeon who was very encouraging, and made me feel very good about my decisions. She asked if I had a plastic surgeon for the reconstruction aspect of my surgery. I didn’t realize I needed a separate surgeon for reconstruction and went with her recommendation to see her brother-in-law who she said she likes to team up with.

The bright, glossy, pristine offices were quite impressive. The staff was friendly, and welcoming.  When I met the doctor he was very convincing that he was an expert in reconstruction. We discussed him putting me back together the way I was. He assured me he could do it. He quickly went over the potential risks of surgery, went over the paperwork, I signed the consent,  and I was ready to go. 

When I woke up from anesthesia I was in excruciating pain. It felt as though I had two heavy bowling balls on my chest. My nipples looked like dead pepperoni where they were sewn back on, and the skin across my breasts was painfully tight. 

About a week later my interior stitches started coming out through the incisions. The doctor prescribed antibiotics, and didn't seem worried. The incisions did not heal as planned, one opened up allowing a hole about the size of a dime, shortly after army green soup started pouring out of it onto my dress as I was literally getting ready to see the doctor. I remember choking back tears as I was so scared. The doctor poked around in the hole with a long q-tip explaining he could see the implant. He did a culture, and tried some different topical medication. I got the call that the culture came back as MRSA! I had MRSA in my implant cavity. I had to have surgery straight away to take out my implant.  I was left with one boob as the infection on my other side healed. This was heartbreaking for me. It hurt so terribly that there was no way I could wear a heavy prosthesis. I put a soft sock in my bra to give me symmetry. It was quite humbling to say the least. 

After a few weeks another implant was put in. The incision stretched again, and interior stitches popped out, but it held up. 

I never felt right on the infected side. The breast clung high up on my chest, and looked lumpy. I was so afraid of another surgery I just let it be. 

One year later, I had gotten used to being in pain, but now it was making me grit my teeth. My troublesome side was hard, and lumpy. I went back to see the doctor. He told me my implant had encapsulated which can happen, but he could swap it out. I was juggling breast implants as we talked, and joking said "can you put this bigger one in? "His face lit up ,and he said "Of course! It will be even better." So we decided to redo it all......I know what you are thinking! Forehead slap! Nooooooo bad decision, but I was very naive.

Well, I got my new implants which were larger. A week or so after my troublesome side starts spitting stitches, and a goopy hole formed yet again. My doctor shook his head in disbelief telling me didn't understand why this happened, but he had to take it out again. He insisted it was not because the implants were bigger. He discussed a latissimus flap surgery and he would put another implant in. He said he would pick the size at surgery.

At this point I lost faith in the doctor, and felt something was seriously wrong. I decided to call the oncologist to get a referral for a second opinion.  I made an appointment, and saw a new surgeon. After reviewing my case, and examining me he exclaimed @#$%! His nurse looked nervous, and after a pause I burst out laughing. I was so relieved. He also felt a latiissimus flap surgery was the way to go but NOT an implant. He told me no matter who I chose to do the surgery that I make sure they put an expander in to ensure the same problem didn't happen again. He also, explained that the expanders would have been the best route with my first surgery. He never bashed the first doctor, but I could see his bewilderment.

I went with my gut, and the new doctor did as he said. I had the surgery with an expander, and eventually a new implant with no infections. It was not beautiful, but I was not about to have another surgery just for cosmetic reasons especially with the infection risk.

About a year later, the other side that still remained from my previous surgeon became enormous, red, and rock solid. I went to my hero surgeon again only to be admitted to the hospital strait away, and out came that implant. It had somehow ruptured! I had no trauma, impact, or accident. It was a silicone gummy which is nearly impossible to break! Remnants of the first surgeon I bitterly thought. I had to use the “sock” trick again until he could safely replace the implant. It all worked out fine.

Flash forward another year, and I was diagnosed with stage 3 breast cancer. I was part of the 5% chance of getting breast cancer despite having preventative surgery. The cancer started in a milk duct and had spread to my lymph nodes.

I was not angry. Horrified, yes! I immediately told myself that I did everything I could possibly do to avoid this. Had I not tried, I would never have forgiven myself. 

My hope is that in sharing my story, I can encourage others to do their research in great depth instead of trusting the first surgeon you meet. It is also worthwhile to research the hospital as some are better than others. Not all are bad, but it is worth a second opinion at least. I know that some of you luckily have successful results. I have found that in speaking with others that complications happen more frequently than I thought. At the end of all of this I am healthy, safe, and found an excellent surgeon to help me .