By: Dr. Simran Malhotra
Cancer and I were first introduced to each other when I was 13 years old — when my mom was diagnosed with breast cancer at 33. She went to her doctor with concerns of a breast lump at the time, but her doctor told her she was too young to have cancer and not to worry. After a whirl wind of doctors & biopsies, she was diagnosed with stage 1 triple negative breast cancer. From there, she had a lumpectomy, 6 weeks of chemo, and 12 weeks of radiation. Her genetic testing came back negative at the time — which was a relief to her knowing her daughter was safe, or so we thought.
Fast forward several years; I decided to pursue a career in medicine because, of course, after watching my mom’s experience with cancer — I was going to find a cure.
In 2013, as a second-year resident, I got a call from India that my moms older sister (58) was admitted to the hospital with nausea & vomiting and found to have fluid in her abdomen. My heart sank, knowing the very possibility that she could have cancer. She was then diagnosed with primary peritoneal cancer, an aggressive subtype of ovarian cancer. She passed away a little over a year later.
After her diagnosis, I started asking more questions about our family history. I discovered that multiple women on my maternal side had had breast and reproductive cancers — some alive and some passed away. With the advancements in genetic testing, I encouraged my mom to get genetic testing again — surely enough this time, she was positive for the BRCA 1 mutation, which is the hereditary breast cancer gene. Shortly after that, she got a total hysterectomy, which is removal of her reproductive organs, to decrease her risk of ovarian cancer.
Then came my turn. In December of 2014, at 25, just after getting engaged, my fiancée and I met with a genetic counselor to pursue genetic testing. It revealed that, I too, was a BRCA 1 mutant carrier — which significantly increased my lifetime risk of breast and ovarian cancers.
I had my first screening MRI and, unfortunately, biopsy shortly after that. Going through the biopsies, waiting for the results, and getting multiple follow up imaging was by far the scariest thing I have been through — thank God everything was negative in the end.
I then went on to pursue specialty training in hospice and palliative care, a field that most of my friends and family still do not understand due to the cultural taboos surrounding death and dying. In the last several years, I have cared for many young women who have died of breast and reproductive cancers — some of whom had the same genetic mutation as me. This evoked and continues to evoke an unconscious emotional response within me — the fear and anxiety that I could be in their shoes ones day. Sharing this mutation with many of my patients has been a double-edged sword — it has allowed me to feel deep empathy and compassion for them while also worsening my anxieties. My work in palliative care continues to be a humbling experience.
I was blessed enough to have met my husband and have two beautiful children without having to worry about freezing my eggs, fertility treatments, and many of the other challenges women with genetic mutations and cancer may face. I got my screening MRIs in between breastfeeding both of my children. During this time, I made scrapbooks, videos, and wrote letters to them because — you never know how life will change its path on you. And I knew once my breastfeeding journey was over, I was going to start thinking about prophylactic surgeries.
Meanwhile, life had a different plan for my mom, despite having just celebrated being 15 years cancer free. In May 2017, my mom was diagnosed with breast cancer again at 49, during her annual screening MRI. She was urgently advised to get a bilateral mastectomy, which she did with a flap reconstruction. She now has chronic abdominal pain around her scar.
Shortly after finding out about my genetic mutation and after my mom’s second diagnosis, I immersed myself in the literature to learn about nutrition, lifestyle, and its implications on people with genetic mutations. Because sure I could get prophylactic surgeries, but my gene mutation increases risks of other cancers too – like pancreatic. What I found was shocking. I learned about the power of plant-based diets and the other five pillars of lifestyle medicine and their ability to prevent, treat, and reverse 80% of lifestyle related chronic diseases — including cancer. Although lifestyle changes will not prevent from me getting cancer due to my genetic predisposition, they certainly won’t do me harm! I found Dr.Kristi Funk — a plant based breast surgeon who gave me SO many answers I was looking for in her book — Breasts, the owners manual. I am now working on getting board certified in lifestyle medicine and using the knowledge I gain to help my seriously ill patients. I found veganism, which has shown me the importance of compassion and love towards all living beings. This genetic mutation has been life-altering in more than one way — it has led me to find my real purpose in life.
After my most recent screening MRI in December 2019, we started interviewing breast surgeons, GYN onc surgeons, and plastic surgeons. It became real. The multiple doctor’s appointments, reconstruction vs. no reconstruction, and concerns about surgical menopause became my main focus. Doctors not LISTENING to what I want was genuinely frustrating — and being a doctor myself didn’t make me immune to the frustrations with our healthcare system. The plastic surgeons I saw assumed I wanted reconstruction and in fact, I felt somewhat written off when I told them I was considering going flat. I believe surgeons should offer all reconstruction options; implants, flaps AND asthetic flat closure.
My research of the literature, my moms experience and my already small breasted body led me to deciding on getting a bilateral mastectomy without reconstruction. Studies show that most women don’t have a good enough understanding of risks vs benefits of reconstruction, especially the complications. I decided I want minimal surgeries and decrease my risk of any complications. I also found that studies show that the women who didn’t haven’t reconstruction underestimated their future quality of life and those that had reconstruction overestimated their satisfaction and quality of life. This has been eye opening for me.
And then there was a twist, just as I was doing all this physical, mental, and emotional preparation for surgery, COVID happened. My husband is a critical care physician and so the two of us became very busy taking care of sick patients. My surgery got postponed.
Now that things have settled down again. My surgery is rescheduled for September 2020 — assuming we don’t have a second wave. I’ve settled on getting a bilateral mastectomy without reconstruction and total hysterectomy with oopherectomy at the same time. And although I have learned a lot from my work in palliative care and as a previvor, COVID taught me that living in fear and anxiety of something that will happen months from now is senseless — when you don’t know how your life might change tomorrow.
I’m still at the beginning of my previvor journey, but I already feel like I’ve come so far from the day I got tested. I’ve learnt that nobody knows my body better than me and that “knowledge is power”. My “why” are my kids and I’ll do what is in my control to be here for them as long as I can. We each have a story that has the ability to empower, inspire and impact somebody else’s life. I love listening to people’s stories and sharing mine.
I share my passion for educating people about palliative care, culinary medicine and lifestyle medicine along with my previvor journey on Instagram @drsimran.malhotra and @honestlywholistic