You can call me a ‘previvor’
By Clarissa De La Paz
My dad died of breast cancer. Yes, my dad had stage 4 breast cancer when he was 50 years old. I almost always have to repeat this during medical checkups or when I tell friends this story because breast cancer in men is a rare disease. Less than one percent of all breast cancers occur in men. Since then, I have had this fear of breast cancer.
I had my annual executive checkup in August 2020. I was feeling perfectly fine, it was just another run-of-the-mill routine. On Aug. 31, however, my results came back and I found out that I had two lumps in my left breast. “You have a left breast complicated cyst and solid nodule that are probably benign. In order to establish the nature of the lesions more conclusively, you should consult a breast specialist for further evaluation,” I was told.
My lifelong fear overwhelmed me and before acting logically, I broke down into tears. After letting it all out, I did the most logical thing and called up a few breast specialist clinics. I booked the one who could accommodate me the following day. Until the appointment, my mind was clouded, I couldn’t be bothered with anything else. I couldn’t wait for the next day.
The breast specialist, now my doctor and breast surgeon, recommended a biopsy and a genetic test, given my family history. The test would determine if I carried the BRCA mutation. “Whether or not you’ve ever had breast cancer, knowing that you have a BRCA mutation means that you are at much greater risk of developing breast and possibly ovarian cancer in the future,” I was told.
Time is of the essence so we scheduled my biopsy the soonest my doctor was available which was the following week (Sept. 9) while the genetic test, I took the day after my consultation (Sept. 2). Worrying about my lumps was one thing, waiting for test results was another. Cue in sleepless nights and random breakdowns.
I received both the results of my genetic test and biopsy within the same week, which happened to be the week leading to my 38th birthday. My genetic test results came Sept.14 while my biopsy results came Sept.17, one day before my birthday.
Good news: the biopsy results came out benign! Whew!
(I’ve never celebrated my birthday as much as I did in this one, truly celebrating life. It was a happy birthday indeed.)
Bad news: I tested positive for BRCA1.
“Females with a pathogenic BRCA1 variant have approximately 40 to 87 percent lifetime risk of breast cancer. The lifetime risk for ovarian, fallopian tube, or peritoneal cancer is 16 to59 percent,” I was told.
I now have two options: early detection or risk reduction. Early detection means clinical scans every six to 12 months, i.e., mammogram, breast MRI, transvaginal ultrasound. Risk reduction, on the other hand, entails preventive mastectomy and oophorectomy, i.e., surgery to remove breasts, ovaries, and fallopian tubes. Breathe.
It was indeed a long and serious discussion with the genetic counselor and another similar discussion with my breast surgeon. How do I even put into words my thoughts and feelings during those sessions?
My doctor said the biopsy coming out benign is buying me time to make a decision. She acknowledged that it was a lot to take in and suggested for me to take a break first and think about my next steps. She said to see her after three months, which was around December.
I didn’t really take a break as my everyday thoughts revolved around breast and ovarian cancer. The logical me would like to research more about this but doing research added to my anxiety and I found myself once again overwhelmed with emotions. I talked about it with family and friends and while the women voted unanimously for risk reduction, of course, it was easier said than done. Also, discussing this with Miko, my husband, was so much more intense and emotional.
As my next appointment neared, I had to make a decision. There’s always a thousand thoughts, a million what-ifs running in my mind. They were overwhelming and hard to digest. Again, there was the logical list of pros and cons but what really made an impact were the small remarks that would surface when I opened up to people. My therapist said, “You are not your body parts. Your womanhood is not defined by your female body parts.” One friend said, “I’d choose risk reduction if I had kids. I’d choose risk reduction even if I didn’t have kids.” Another friend said, “Your kids don’t see you as mommy with boobs and ovaries. You’re just mommy. They just want to be with mommy.”
After asking for the nth opinion from doctors in the family and among friends, and after several rounds of meltdowns, I’ve decided to go for risk reduction. I prioritized the preventive bilateral mastectomy and breast reconstruction because I can’t get the “87 percent chances of breast cancer” out of my head. It took about four months to sort out the procedure, set appointments with my breast surgeon and plastic surgeon, align hospital bills with my insurance provider, and undergo breast MRI and pre-surgery diagnostics.
I had my mastectomy last April. The pain post-surgery lasted for a few months. There were drains to take care of. I couldn’t lift my arms and the entire chest area was sore. It took a while to take a regular shower again. Sleeping was also a problem. There was just no comfortable position, not to mention the countless times I’d wake up in the middle of the night because the pain was just too unbearable. It took weeks to lie down again, and even longer just to sleep on my side again. Physically, I was in pain but mentally and emotionally, I felt relieved. One down.
I now have two options: early detection or risk reduction. Early detection means clinical scans every six to 12 months, i.e., mammogram, breast MRI, transvaginal ultrasound. Risk reduction, on the other hand, entails preventive mastectomy and oophorectomy, i.e., surgery to remove breasts, ovaries, and fallopian tubes.
During recovery, I began my search for a gynecologic oncologist. After transvaginal scans and consultations, we scheduled my oophorectomy in August. This time, I wasn’t so worried about the procedure itself. It is only one hour long (compared to the six-hour mastectomy). The laparoscopic (keyhole) procedure has less down time (just one month of hospital leave). My worries now lie on the effects of premature menopause, i.e., before age 40. Nonetheless, it was a choice between early menopause or ovarian cancer, so I did what I had to do.
The past one year has been both a trial and a miracle. The pathology results of my mastectomy showed a ductal carcinoma in situ (DCIS), i.e., there was a 3 mm cancer tumor in my left breast. This is stage 0 breast cancer. We rarely hear of stage 0 because they’re too small to be detected in scans. We’re more familiar with stage 1 where the tumor is at least 1cm, stage 2 at least 2cm, and so on. The time the tumor develops to stage 1 varies, it can take months or years. But given I have BRCA1, it will most probably develop fast. My oncologist friend said, “What you don’t want to happen is for the BRCA1 to develop because it’s going to be aggressive.”
What I thought I was doing as preventive was actually treating myself in the earliest stage of cancer. My breast surgeon couldn’t be happier and acknowledged that I couldn’t have made a better decision. Because I had a mastectomy, I don’t need to undergo any cancer treatments anymore.
People would ask me how I was during recovery. I tell them that every day, I wake up to the thought of this miracle in my life. I couldn’t be more grateful and amazed how it all unfolded.
I’m grateful for genetic testing that paved the way for awareness and early detection. I’m truly in awe of the advances of medical science.
I’m grateful for all my doctors (the doctors in the family who offered both knowledge and assurance, the doctors among my friends who helped me process my options, the doctors in Singapore who treated me).
I’m grateful for having a “completed family size,” another medical term I learned that means you’re done having babies. I am grateful for having conceived easily when we wanted and for having breastfed my kids.
I’m grateful for a very strong emotional support from Miko, our families, and friends. It was the simplest yet the kindest of words that got me through each day. “We’re in this together.” “You got this.” “It’s normal to feel anxious.” “It’s ok to be scared.”
I’m grateful for the decisions I’ve made. I can’t imagine what could have been had I delayed making them for a year.
I’m grateful for the voice that guided me to make these decisions. I feel and I want to believe that it’s actually my dad’s voice. Despite the challenges, there really are a lot to be thankful for. These are all the things that made me win over cancer.
A previvor is someone who has an elevated predisposition to being diagnosed with cancer due to a risk running through their family. The term is meant to explain how many of these people feel about having a higher chance of developing cancer, and the struggles they go through to navigate this distinction.
I’m writing this for BRCA awareness and genetic testing awareness. Before my breast lumps, I only knew of Breast Cancer awareness and regular examinations for early detection. Little did I know that I could take more control. With the knowledge and awareness, I was empowered to make an informed decision.