My Previvor story starts with my mom’s diagnosis with Breast Cancer in 2006 Stage 1 and DCIS. She had a double mastectomy and hysterectomy within months. No chemo was needed. She had a lot of complications due to a rare bleeding disorder discovered while recovering. She had a wound vac for months and was allowed to take a break from it for my Hawaii wedding in March 2007. There were so many complications she decided against breast reconstruction.
During this time she was tested for the BRCA mutation and tested positive. I was tested in 2007 at the age of 24 and learned I was also positive. The genetic counselor was amazing and explained ahead of time what all this would mean and different options. I chose surveillance because I knew I wanted to breastfeed my children and didn’t want this mutation to make any choices for me or control my life.
I started getting scans, mammograms, MRI’s, ultrasounds and seeing high risk doctors. I wasn’t too worried at this point; I even skipped a year of appointments with my breast surgeon. This is not recommended! The standard of care is an exam every six months and a rotation of either an MRI or mammogram prior to these appointments. I was living life but knew down the line I’d have some preventative surgeries.
My first major scare was in January 2012 (age 28) during my annual exam with my OBGYN. She felt something and since I was high risk she immediately did a pelvic ultrasound and learned I had a bicornuate uterus (heart shaped) but she was concerned about a pouch. The three day wait for an MRI was the longest of my life. All kinds of fears ran through my head, not having kids, cancer, who knows. However, everything came back normal! What a relief!
It was after this appointment that I began getting very anxious and worried before each appointment with my doctors. I realized the seriousness of the BRCA mutation and that my doctors would order more scans and tests than they would for their non-high risk patients. Knowing this led to worry days leading up to appointments and scans and I would come home from appointments exhausted and emotionally drained.
I had another scare in November 2013 during my biannual appointment with my breast surgeon. He said my left breast was lumpy which led to an immediate ultrasound. The ultrasound tech couldn’t tell what it was so she brought someone else in. That waiting time, alone in the dark exam room, was terrifying! I was crying so hard while my mom and 11 month old son were in the waiting room. They ordered two biopsies. I walked out crying and told my mom, “they found something”. The wait and recovery from the biopsy were rough. Breastmilk began leaking from one of the sites and I had to get a stitch (annoying as it was it was also very funny!). All results came back normal! After this biopsy I knew I’d have a double mastectomy when done having kids. More anxiety for appointments occurred but I felt relief again!
I continued with biannual scans and appointments along with yearly pelvic ultrasounds. During one appointment my breast surgeon recommended that I get my hysterectomy first. This threw me for a loop! The reason for this recommendation, I came to learn was because it is much easier to detect breast cancer and there is no clear way to detect ovarian cancer until it is too late. I came home and cried to my husband out of fear of this surgery. He was and has been incredibly supportive of all decisions, no matter what. The BRCA related appointments were becoming very time consuming and took a lot of mental energy out of me.
In 2017 I had my second biopsy. This time a mammogram found spots. This was my first non-ultrasound since 2012 as I had been either pregnant or nursing from March 2012-January 2017. When I spoke to the nurse on the phone I assured her it was already biopsied as the previous spots were problems at each ultrasound because my breasts were always changing with nursing and pregnancy. She said, “these are different.” My heart sank and immediately called my husband, mom, and best friend. I was freaking out. I had another mammogram, then biopsy. Before the biopsy the radiologist explained what he thought it could be but also that it could be DCIS. I also spoke to my breast surgeon on the phone and he calmed me down and ordered the biopsy. Biopsy came back fine. Relief for a third time! At this point I knew I needed to start my preventative surgeries. I was constantly worried about cancer, wasn’t present in my life when waiting for results, anxious, irritable, and wasn’t enjoying life. It was beginning to do exactly what I did not want it to do - make choices for me and control my life.
A month after this my mom came over and explained that during a CT scan they found some spots on her sternum and in her lung. Her doctor said it was breast cancer but my mom didn’t have all the results yet. We had to wait a week for her results which came back that her initial stage one breast cancer had metastasized after 11 years. There was nothing she could have done to stop this and nothing she did wrong to cause this! She thought she was done with cancer and had been focused on her heart issues and pacemaker! My mom told me to have the double mastectomy and I knew she was right, I could not wait any longer. This was a very difficult time for everyone. Figuring out her treatment plan, finding a good doctor, and accepting this diagnosis.
The day my mom learned she has metastatic breast cancer was also my biannual appointment with my breast surgeon. I dropped my kids off at my mom’s, hugged her, cried, and hugged her some more. She seemed ok - how was she able to be so strong? I offered to cancel my appointment or find someone else to watch the kids. She wanted them over and they had a good time together (as always).
While waiting for my breast surgeon I sat in the exam room and cried. The thought of what my mom will be going through, the thought of losing my mom, my kids losing their grandmother, the thought that this was so unfair and didn’t make any sense, and the prayers I said that day was full of hurt, anger, and faithfulness.
My breast surgeon hugged me as soon as he came in and we talked about options. I felt selfish thinking about myself while my mom was just sitting with this news but I also knew I never wanted my kids to feel this way. We discussed surgery and he referred me to a plastic surgeon. After meeting with the plastic surgeon my surgery was scheduled for 1/15/18. I was nervous, scared, and excited to remove this 11-year worry! My mom’s eagerness to live life and her example of faith and joy were contagious through this time!
My breast surgeon of 10 years did my double mastectomy. I chose skin sparing with expanders for a lot of personal reasons. I wanted a shorter recovery and fewer surgeries, after all, I wanted to live life! My recovery time was good, I took the time to read, relax, enjoy my kids, and watch movies! Several things were very helpful: a pregnancy pillow once the drains were out, Vitamin C gummies, drain apron, button up PJs, zip front sports bras, and lots of help. It was difficult to do most things for the first week including getting out of bed and showering. My husband helped so much through this time and I experienced a lot of love and blessings from friends and family.
My exchange surgery was 4/25/18 which was a breeze compared to the double mastectomy. After that, I enjoyed life and found a deeper faith and joy that only God can provide! Are my new breasts perfect, not at all! I have ripples and indents at the top of my breasts but they are the new me, without an 87% risk of breast cancer.
The only issues I had during recovery were issues with stitches popping out. My body had trouble absorbing the stitches. This was a very minor issue but everything was still causing worries at this point. My plastic surgeon was amazing - he responded to emails immediately and even saw me on a Sunday morning to double check healing. Relief!
My fourth scare was summer 2018. I had horrible cramps, they woke me up at night and I wasn’t sleeping. This went on for 3 weeks. I saw my OBGYN and had a blood test which included CA-125. This came back high at 63. I was terrified! I had my double mastectomy and thought now I have ovarian cancer?! I had an ultrasound the next day and it came back normal. But the cramps didn’t stop! My periods have always been pretty painful but this was much worse. I eventually went to the emergency room one night and had a CT scan. This came back just fine! But I also knew that something could be lurking so I started talking to people and praying about the next decision. I met with three different doctors and decided to wait until fall for the hysterectomy. I LOVED my summer, trampoline with the kids, parks, swimming, playing outside, tubing, kayaking, movies, and ice cream! I soaked up the summer with my family!
My hysterectomy was 11/27/18. I was very nervous! Would I change? Would I have menopausal symptoms? Would estrogen be ok for me? I decided to have everything out, ovaries, fallopian tubes, uterus, and cervix. No more Pap smears! I removed several risks of several cancers all at once! My gynaecological oncologist used the Da Vinci method and I had one incision in my belly button. Things that helped were: colace, gas x, heating pads, walking, and taking it easy even when I felt I could do more.
It’s only been a few weeks since my hysterectomy but I feel the same! Normal surgery recovery things but nothing has changed about me! Estrogen is working for me now and my moods have been fine. This has been such a relief!
I recently had my one-year post op with my breast surgeon. I will only have yearly physical exams with him. I do have a scar tissue lump under my incision and around my implants, I can also feel two permanent stitches. My next step will be nipple tattoos.
My family and friends were amazing through my recoveries. My kids took it easy on me and were excited with each recovery milestone! Having three surgeries in one year was a lot on my family. We made the most of the in betweens!
My mom has been doing well and her scans improved and have been stable for a year now! Her first line of treatment has been working! She even organized a Metavivor fundraiser which raised over $20,000! I am in awe of her strength and courage through this. She has been so amazing and supportive through all of this. I am thankful that there are more treatments coming out and some specifically for BRCA patients! She is doing so much for local MBC patients. I am so proud to be her daughter and hope to be the same example for my kids.
The past 11 years have been full of anxiety, worry, and fear of the unknown. This year of surgeries wasn’t easy and my body looks different than it did before. Has it been difficult? Yes. Has it been worth it...definitely! As much as I have worried I have also grown, my faith has multiplied, and the love in my life has been so evident. I consider this BRCA mutation and all the stress it brings to be a gift. I am done with my BRCA surgeries! This is a relief I can’t explain. It is no longer a temporary relief before appointments, it’s freedom! I am so thankful for the opportunity to remove this weight that has caused such worry in my life for the past 11 years. Learning I am BRCA positive was scary but it truly was a gift. It has given me life! I am excited to move on from BRCA stuff and enjoy life, my family, and my mom.
I know my journey is not over. I’ll see my breast surgeon, gynaecologist, primary doctor, and dermatologist yearly. My kids have a 50% chance of having the mutation and we won’t know until they are 18. We have lots of fun to be had and memories to make!
Instagram - @brcajourney