Mastectomy

Hi! I'm Nikki. I'm a 45 year old mom to my amazing son Alec. In 2020, what was supposed to be a preventative double mastectomy with reconstruction turned into a double mastectomy without reconstruction. Since then, people have asked me about my story and I always share it in hopes that it helps someone else going through it. 

This may be long, but I'll do my best to keep it as straight forward as possible. Due to family history (my mom passed away from breast cancer when she was 53 and I was 24), my maternal grandmother passed away from ovarian cancer in her early 60's when I was 11. My mom and grandmother raised me, they were my parents, and losing them both so young forever changed me. 

After my mom died in 2005, I had BRCA testing. It was negative, but I continued doing annual exams (at the time, the recommendation for someone in their 20's who had not had children was to alternate MRI with ultrasound). I didn't have any issues, but went to my appointments. I got married to my ex-husband in 2007 and we tried to have children without any luck. I saw a fertility doctor who ran a lot of tests and said that something was wrong. As a result of his testing, I was diagnosed with Lupus SLE. It was a shock, but I later learned that it may be related to the fact that I was born with PID (Primary Immune Deficiency), though no one knows the cause of Lupus. 

Some time went by, I got divorced and assumed I would never have a biological child of my own. I looked into adoption, which was something I was strongly considering. I ended up having a big surprise when I found out I was expecting my son. After a hard pregnancy (that I'll write more about in the future), a NICU stay for my son and a scary hospital stay for myself, my son Alec and I came through the other side just fine. 

A few years later I started feeling lumps and went for my annual mammogram. A biopsy followed and it was determined to be 'atypical ductal hyperplasia" ADH, a pre-cancerous condition. A lumpectomy removed the lump and some surrounding tissue. Due to ADH increasing the risk of cancer in the future, I saw Dr. Huma Rana at Dana Farber. She's one of the top genetic doctors in the country. She reviewed my updated genetic testing (90+ genes!) and said that while my genes only had variants of unknown significance, my family history combined with my pre-cancerous lumps, dense breasts and a few other factors, my risk was high enough to warrant a preventative mastectomy.

I had a feeling that day would eventually come. I was not able to nurse my son (due to the lupus medication I was taking at the time) and I felt like I was a ticking time bomb to get cancer like my mom did. I just knew it didn't feel right. The process to schedule a mastectomy isn't always quick. I met with a number of doctors until I found the right person. I also met with my rheumatologist (for Lupus) and my immunologist (for my immune deficiency). What I was met with was a confusing situation. None of my doctors would ever recommend that I get breast implants for cosmetic reasons, as the risk of an immune response would be too high....however, they all were concerned about the mental implications of me having a mastectomy without reconstruction. I would be disfigured, and I was still relatively young. 

I met with multiple surgeons, looked at all the options (including DIEP flap, which I was not a candidate for due to the intensity of the surgery and the ICU stay I would need and the high risk of my body rejecting the tissue). What I came up with, was that I had no good reconstruction options. I was devastated, but determined not to let it control the outcome. I knew I had to make the right choice to give myself the best chance at staying alive long term for my son. 

I met with Dr. Michele Gadd at MGH in Boston. She is both an oncologist and a surgical oncologist, and she is incredible and highly recommended by many people. I explained that for about 5 years I had been meeting with doctors, researching options, and as more and more precancerous lumps popped up and the cycle of scans every 6 months followed by biopsies got more and more extensive, I was ready to move forward with a double mastectomy without reconstruction. Prior to meeting with Dr. Gadd, three other surgeons flat out said they wouldn't do the surgery on me. I would be left disfigured, and mentally impacted by such a dramatic change in my body. I was angry at the time, wondering how they should be able to make that decision for me. Dr. Gadd was patient, she didn't jump to conclusions. She listened to my story, even through my tears. She did ask that I meet with her plastic surgeon, hoping there may be an option for me, but there wasn't. Her plastic surgeon was very kind, and said she could "try implants" and take them out if I had a reaction, but that felt like a lot of risk and a lot of surgery, so I decided to go forward with the double mastectomy, unreconstructed. 

On September 15th 2020, I had my surgery. Due to my immune system, and the pandemic, I had to go to the surgery alone. My son's dad dropped me off at the door and picked me up when I was done. It was done as day surgery, so I wouldn't be exposed to the pandemic germs in the hospital. Totally wild right, just chop those girls off and send you on your way! But to be honest, Dr. Gadd was incredibly warm and patient with me when I was anxious and scared. I wasn't even scared of the surgery, I was afraid of the anesthesia. I had a complication during the birth of my son and I was so afraid I wouldn't wake up from the mastectomy surgery. The anesthesiologist at MGH are amazing. I woke up and went to dinner at my aunts house on the way home (she babysat Alec for me, who was 5 at the time). I had very little pain, thanks to a nerve block. I only needed Tylenol and Motrin. I had 2 drains for 10 days...they weren't comfortable, but it was manageable. A nurse came to my house to check on me. I'll write a separate post about recovery and what was helpful. 

On the 2nd day, the nurse told me to look in the mirror. She looked me in the eye and said "I'm going to say with you. You're going to look. Then you're going to cry. And you're going to get it all out. Cry as hard as you need. Then I'm going to help you clean yourself up and you are going to go on with your life as a healthy mom to your sweet boy". And I did. I don't know her name, but I am forever thankful. 

Now it's 6 years later. For the first 5 years I just stayed flat. I didn't love it, but no prosthetics I found felt okay. A few months ago I found a few companies that make soft lightweight inserts that are pretty good (nothing is perfect though) and I feel so much more like my old self. 

I realized over the last 6 years that life really changes after you go through something like that. Very early stage (stage 0) cancer was found in the pathology report. It was high grade and fast growing. I was lucky (if lucky is the right word). I started this blog because I am positive there are other women like me out there. Or women who aren't sure what to do, and feel like there aren't a lot of good options...and you're right, there aren't. But I believe you're stronger than you think. I'm pretty wimpy, and if I can do this, you can too. Knowing that I wanted to do everything I could to help me be here as long as possible for my son was my motivation. 

I hope this blog becomes a place for women to know they aren't alone. I also hope it's a place where you can see that regular life does return, you are just forever changed (and in many ways, in a good way....I feel so much more thankful for the small things in life). I love to watch my son do his gymnastics, I love reading, I love the feeling of an ocean breeze, I love my friends and my family and my cat and dog. I feel so very grateful for each day.