This post is about my personal decision to have my ovaries removed. I am a BRCA1 positive, breast cancer survivor that opted for a laparoscopic prophylactic oophorectomy to decrease my risk of ovarian cancer.
Why I Chose to Have My Ovaries Removed – BRCA1 & Oophorectomy
I recently had an oophorectomy at MD Anderson because I have the BRCA1 gene mutation. So, in order to help others who may be BRCA positive, I wanted to write this post and make a video to share why I chose to have my ovaries removed and how the surgery and recovery was.
Here is my video, but to get more details, please read the blog post below.
What is BRCA?
First, let’s talk about what BRCA is. BRCA is a gene that is responsible for keeping cells healthy. It provides the instructions on how to make the tumor suppressor protein. So basically, it helps repair any cell damage and keeps our cells functioning properly. If you have a BRCA gene mutation, the gene is not functioning correctly, and therefore, you have an increased risk of getting certain cancers. BRCA mutations are associated with higher risks of breast cancer, ovarian cancer, prostate cancer, and other cancers.
My BRCA Test in 2009
At the time of my breast cancer diagnosis, I already knew there was a family history of breast cancer. My cousin tested positive for the BRCA1 gene mutation, specifically the 187 delAG mutation. So, my BRCA testing was made easier because they knew exactly where to look.
To no one’s surprise, I tested positive for the BRCA1 gene mutation. Because of this and the fact that the cancer was aggressive, I had a bilateral mastectomy (with breast implants reconstruction) followed by 4 rounds of chemotherapy.
At the time, I knew the BRCA1 gene mutation put me at an increased risk of getting ovarian cancer, but I was not ready to have my ovaries removed.
Options for BRCA Positive Women
There are options for BRCA positive women. You do not have to have surgery. There is the option to increase surveillance as well as take certain medications to reduce your cancer risk.
I chose increased surveillance until it came time to have my ovaries removed. Unfortunately, it is hard to detect early ovarian cancer. The doctors do what they can, but not everything shows up in the ultrasound or CA-125 blood test.
First Came the Salpingectomy
Three years ago, I had my fallopian tubes removed to decrease my ovarian cancer risk until I was ready to have my ovaries removed. What was supposed to be a routine, easy surgery turned into an unexpected frustration. I had a complication during surgery and it took me a few months to fully recover.
My Ovaries: The Ticking Time Bombs
In the last few years, I have felt like my ovaries were a ticking time bomb. According to research, the ovarian cancer risk for BRCA1 women greatly increases when you reach the age 40. The plan was to have my ovaries removed around that time.
Every six months I would go to MD Anderson for pelvic exams, transvaginal ultrasounds, and CA125 blood tests. And, every six months the anxiety would drive me crazy. I had a bad case of scanxiety before, during, and after these visits.
BRCA1 at Age 40
This summer, I had my 40th birthday. When I was diagnosed with breast cancer at age 31, I honestly wasn’t sure I’d make it to 40. To celebrate the big 4-0, my family and I spent a few days at the beach in Galveston.
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Take that 4-0! Almost 9 years ago, diagnosed with breast cancer at age 31, I honestly wasn’t sure I’d make it to 40. But, here I am, on the beach, still able to do headstands. I thought about photoshopping the picture because I don’t like the way my stomach looks, but I wanted to post an honest picture of how I looked and felt today. I’m so grateful for everything I can do and the people I can spend time with. A weekend on the beach with my family was a great way to celebrate this birthday.
Although I had a wonderful time, in the back of my head I was thinking about my upcoming surgery to have my ovaries removed.
I was nervous about having another surgery. I was scared the doctors would find cancer and I was worried about going through surgical menopause. My anxiety was sky high!
BRCA1 Oophorectomy to Reduce Ovarian Cancer Risk
I had my laparoscopic oophorectomy (ovaries removed) on September 21, 2018. With a laparoscopic oophorectomy, the surgeon only needs to make small incisions and most of the time you can go home the same day. My oophorectomy at MD Anderson was a laparoscopic outpatient procedure.
We arrived at the hospital around 9 am that morning and were leaving the hospital around 6 pm at night.
Laparoscopic Oophorectomy Outpatient Surgery
The actual surgery was about an hour or so. During the surgery, the doctor did a thorough exam to check for cancer and any other abnormalities. They removed a cyst that was found near my diaphragm, but everything else looked good. The laparoscopic surgery only required three small incisions, the largest about an inch long.
Laparoscopic Surgery Recovery from Having Ovaries Removed due to BRCA
When I awoke from surgery, I was obviously quite groggy from the anesthesia, but the pain was manageable. It was way better than I thought it would be. The worst side effect I had was extreme nausea and faintness when I tried to stand up to leave the hospital.
The doctor sent me home with prescriptions of high dose acetaminophen and ibuprofen, as well as a little bit of hydrocodone. I only took the hydrocodone once or twice as recommended to help sleep, but other than that I managed the pain with only acetaminophen and ibuprofen.
How I Felt the Night after Oophorectomy Surgery
The night of my oophorectomy, I was quite sore, but again, I was surprised that I did not hurt worse. I did not sleep well, not because of the pain, but because I felt jittery yet tired at the same time. It was really weird. I believe the combination of all of the different drugs did that to me.
How long does it take to recover from ovary removal surgery?
That’s the big question! I wanted to know how much time to take off of work for my oophorectomy, but no one could give me an exact answer, understandably. Everyone recovers at a different pace. There was a restriction from lifting more than 10 pounds for a few weeks.
I work as a teacher at a small private school, part-time. I took a week off from work. The second week, I worked a light schedule and got a ride from a friend. It was not that I shouldn’t have driven. I was not taking any heavy medication, but since my friend offered, I took her up on it.
Week One after Ovary Removal Surgery
The first week of recovery from the oophorectomy, I was pretty sore. I would compare it to how you feel after a really tough ab workout. I felt sort of beat up inside and bloated from all the examing they did. As recommended, I did a little bit of walking. Exactly a week after surgery, I attended the Celebration of Life Luncheon. Then, a little over a week after my surgery I participated in the 2-mile Race for the Cure (walking).
By week two, I was up and about more. I walked my son to school a few of the mornings.
Week Five after Oophorectomy
Now, at week 5 post op, I feel I am mostly recovered. I still feel more exhausted than normal. Also, when I tried doing some housework (vacuuming, laundry, mopping) I started hurting again. And no, it’s not an excuse to get out of housework. I promise. I find twisting and bending motions still cause a little bit of pain afterward.
Surgical Menopause After Prophylactic Ovary Removal
One of the side effects of an oophorectomy is surgical menopause. An oophorectomy immediately throws your body into menopause.
Depending on your medical history and your doctor, you may be able to take some hormones or medications to help ease you into menopause.
Usually, breast cancer survivors are not allowed to take any hormones, but since I had triple negative breast cancer, not fed from hormones, my oncologist felt comfortable giving me some hormones to help with the transition.
I am taking a birth control pill that has a mix of different hormones. So far, I have not noticed any side effects of menopause. We will see what happens since it has only been 5 weeks since my surgery.
Overall Thoughts on Prophylactic Oophorectomy for BRCA Positive?
So far, I feel I made a good decision to have my ovaries removed. I feel like a huge weight has been lifted. I know there is a still a small chance of getting cancer, but I know I did what I could to decrease my risk. The biopsy results from my surgery were benign. Whew!
BRCA Positive and Thinking About Prophylactic Oophorectomy?
If you or someone you know is BRCA positive and are considering a prophylactic oophorectomy, please feel free to reach out to me. If you have any questions, then I will try to answer them or direct you to where you can find the answers or resources.
If you know anyone having a mastectomy or other breast surgery, these breast cancer recovery shirts are a must-have.