Previvor

Previvor

(prē-vīv’ər) n. 1. A survivor of a

predisposition (or increased risk)

for a disease such as cancer

 

Recently, I had the privilege of getting to know Previvor, women’s health advocate and fearless Shero, Tracy Milgram-Posner. I found myself inspired by this South Floridian’s bravery, sheer grit and determination. She’s on a mission to help others make informed choices, and I’m grateful she’s made her story available for me to share with all of you. She tells it like no one else can.

You can join Tracy and other previvors on social media on facebook at https://www.facebook.com/groups/BRCAStrong/ and on Instagaram @brcastrong

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It was 17 years ago, yet I still remember the heart stopping moment in 2000, shortly after graduating from high school, when my OBGYN found a mass in my left breast and immediately scheduled a lumpectomy. Thankfully, it came back benign. However, a few years later, at age 20, the cycle repeated itself, as my heart again skipped several beats with the discovery of another lump and a second nerve wracking but, benign, lumpectomy.

These two episodes, especially at such a young age, motivated me to look closely into my family tree. Subsequently, I discovered the “odds were NOT in my favor”! My maternal grandmother and her two sisters had breast cancer. My maternal grandfather had both lung and prostate cancer. My paternal grandmother had breast and ovarian cancer. Finally, my paternal grandfather had prostate cancer. Got a handle on all that? Because I sure didn’t…That’s a lot of the “C Word” in one family!

Spoiler alert, I am of Ashkenazi Jewish descent –  this, as I soon discovered, was a major strike against me where cancer is concerned. The Center for Jewish Genetics states that “approximately 1 in 40 individuals of Ashkenazi descent is a carrier for a BRCA mutation, leaving those individuals at a higher risk for developing breast and ovarian cancer. This is compared to mutation frequency of only 1 in 500 in the general population.”

BRCA Gene Mutation Explained

In the simplest terms, BRCA1 and BRCA2 (Breast Cancer genes 1 and 2) are the best-known genes linked to breast and ovarian cancer. Inherited mutations in these genes significantly increases your body’s risk of developing cancer.

Women who carry a BRCA1 or BRCA2 mutation have a 40% to 85% risk of receiving a breast cancer diagnosis in their lifetime. In fact, their chances are three to seven times greater than women who do not carry the gene abnormality. In regards to ovarian cancer, those with the BRCA1 or BRCA2 gene have a 16% to 60% lifetime risk, as opposed to those without the gene mutation whose risk is just under 2%. You can find all of these facts at: http://www.breastcancer.org

 

The BRCA Gene: Did I or Didn’t I?

Given my ethnicity and family health history, the chances of me living a cancer-free life were looking very slim. I grappled with the decision whether or not to undergo genetic testing. I fit the criteria to have the BRCA gene mutation too perfectly to ignore it. I ultimately concluded that for me, the testing and the definitive answers it would provide, was the only way to truly face my future. I wanted to do everything in my power to avoid the suffering I had seen a diagnosis of cancer bring to loved ones as well as their family. Moreover, I had hopes of someday being a mom. I became laser focused on keeping cancer and all its ugliness away from my future children.

In 2006, I underwent the Myriad Genetics test when most people were still unaware of the existence of the BRCA gene. Angelina Jolie was a long way off from bravely sharing her story with the public. To the best of my knowledge, there were no resources, support groups, or even clinical trials being conducted anywhere near me. In fact, I saw several doctors before one of them even started discussing the BRCA gene and suggested that I see a genetic specialist.

It didn’t really come as a surprise when, at age 22, it was confirmed. The scary truth was made real. My test results showed that I was positive for a BRCA2 mutation – the gene mutation associated with both breast and ovarian cancer. To say I was devastated, scared and confused would be an understatement. I was told I had an 85 percent risk of developing breast cancer in my lifetime, while my chance of developing ovarian cancer was about 30 perce.t

My options were explained to me as being:

  • Receive more frequent cancer screenings including an MRI, ultrasound/mammogram every 3-6 months
  • Preventive medication (Tamoxifen – a drug that essentially blocks estrogen; certain types of breast cancer require estrogen to grow)
  • Preventive surgery (double mastectomy and hysterectomy)

Once I had processed the emotional shock along with an incredible amount of information, my mind immediately went to my intense desire to have children. I chose to push my fear aside and not consider surgery until I was done child bearing. This gene might take away my breasts and other organs, but I vowed it wouldn’t take away my ability to have biological children.

I began the process of getting cancer screenings every six months and continued to meet with specialists including an oncologist, gynecologist, geneticist, surgeon and plastic surgeon. I had an insatiable need to gather as much information as I possibly could, especially in the event my diagnosis would change and result in a more immediate need for action.

Repeatedly, I doubted my decision to be tested for the BRCA mutation. Would I have been better off just not knowing? Maybe I should have taken the wait and see approach. I couldn’t help but think if I would ultimately pass these genes mutations on to my future children. These thoughts swirled through my mind 24/7. In retrospect, I now know that I made the right choice for me. I believe that knowledge is power. Knowing the truth of my genetic circumstances allowed me to be proactive in my healthcare management and make informed decisions for my future, rather than just “wait and see”.

A Major Decision

In 2009, I was blessed to give birth to my daughter, Gabriela. Her brother Jordan joined us in 2012. My dream of being a mom had been realized thanks to the grace of God. However, once I felt my family was complete, I began to seriously consider the more permanent preventative options. It had been 12 years since my first lumpectomy – 12 long years of worry and concern while being under constant medical surveillance. I was tired of doctors monitoring me. I was tired of the innumerable check-ups. I was tired of living in the unknown. I came to the realization that observation was not able to protect me from the ever-present fear that an undetected cancer was growing inside me. The overwhelming desire to be healthy and present to care for my daughter and my son, was the final impetus that lead me to decide upon definitive surgical resolution.

August 2015: A Hysterectomy

In August 2015, I underwent a total laparoscopic hysterectomy with robotic-assisted da Vinci Surgery. This minimally invasive surgical technique utilizes a few small abdominal incisions or sometimes a single belly button incision for a much faster recovery than the large incision laparotomies of old. I stayed overnight in the hospital and went home the next day. I had one hiccup where I had a seroma (pocket of fluid) and a minor infection on the vaginal wall. Both cleared up easily. Not to make light of the surgery, but I had a skilled surgeon, and I recovered pretty quickly with minimal scaring. I was back in the gym before I knew it and happy to have this leg of the journey behind me.

People often ask me how my kids handled the surgery. I deliberately didn’t tell my kids in the time leading up to the surgery so they wouldn’t worry. Unfortunately, a couple of weeks prior to surgery, someone slipped and told my daughter, then six, that I was having surgery. She was very anxious, but everyday up until the day, I explained I was having surgery to live longer and avoid cancer so I could hopefully be her mommy for a very long time. She was understandably upset but worked through it. My son was really too young to understand, and since I recovered so quickly, it didn’t really phase him.

December 2015: Double Mastectomy

Six months after the hysterectomy, I had a prophylactic (preventive) double mastectomy. Prior to undergoing my mastectomy, I spoke with a breast surgeon and made the decision to start the reconstruction process immediately. After researching clinical trials at www.clinicaltrials.gov, I was fortunate to partake in a clinical trial for a product called AeroForm, a breast tissue expander system (www.airxpanders.com )I came out of my mastectomy with tissue expanders, devices used to stretch the skin to create a pocket of space for a long term implant. Within a month after the surgery, I looked as if I had a real breasts.

As part of the AeroForm clinical trial, I had the unique experience of having one standard tissue expander, which requires injections of saline to slowly expand the skin, as well as a new needle-free option that uses carbon dioxide gas and is currently under review by the FDA. I felt that the needle-free option, which I could expand at home, was more convenient, lighter, less painful and more comfortable.  I felt so strongly about the physical and emotional benefit of this product, I agreed to partake in a patient video for the company. If you have a few minutes, check it out here as it really helps to explain the product and its benefits. https://www.airxpanders.com/patient_stories.php

As an aside, I also came out of the surgery with no nipples and two scars straight across my chest. I know myself well enough to know this was really going to bother me. Prior to the surgery, I found the company Naturally Impressive. They make silicone nipple-areola prosthetics that look incredibly real and stay securely in place. You simply create molds of your own nipples pre-surgery and send the molds back to the company.

May 2016: Reconstructive Surgery and Onward to DC

By May, my body was ready for the long-term breast implants. I was anxious to get the surgery behind me so I could finally close the book on the physical part of my journey.

Too big? Too small? Something in-between?  I’ll spare you the details of choosing the right size and shape of my new breasts and just say the surgery took less than three hours. I was able to go home that day. The first four days were rough pain and mobility wise, but I was determined to keep myself moving because I had an upcoming rendezvous in DC.

Five days post-surgery I was on Capitol Hill – yes, Capitol Hill! – participating in a briefing for the Breast Cancer Patient Education Act legislation. I gave them a patient’s perspective on the importance of knowing your options for breast cancer treatment and prevention. (The opportunity presented itself through AirXpanders) I didn’t feel 100 percent to travel, but I was not going to miss this major opportunity to advocate for myself and others.

Not an Easy Road

Physically, if you saw me today, you would never know I had surgery. People tell me all the time how good I look, so clearly, I’m grateful to look and feel healthy. While I may sound matter-of-fact about the surgeries in the information I’ve conveyed, I don’t want to make light of the difficulty of the procedures.

First, the choice to remove healthy body parts is not easy. There is always some doubt about the necessity of such a drastic action. Second, I found the physical recovery from the double mastectomy to be particularly challenging – from the pain to the limited range of motion post-surgery to the visual changes my body underwent. (Quick tip: build up your core before having major surgery – it is critical for recovery. Take the advice from someone who didn’t do enough of it).

About a month after my double mastectomy, I developed a very serious infection in one of my breasts and had a reaction to some of the antibiotics I was given. This was very scary, set my recovery back, and I ultimately needed another operation. Aside from the physical, the emotional toll of surgery is considerable. It’s exhausting being in pain. It’s exhausting trying to explain to your kids why your body looks different every day. And, it’s exhausting being so dependent on others during recovery.

Thankfully, I have an amazing family (my mom is an angel), and I have a fabulous group of friends who have been there every step of the way. As someone who’s always been fiercely independent, it was not easy for me to ask for help. Major life lesson learned: there’s no shame in asking for help.

I’d also be remiss not to mention, I had outstanding doctors and surgeons along the way. I made sure to do my homework when choosing my surgical partners, and I could not have made better choices. Particular thanks goes to Dr. Nicholas Tranakas, Dr. Ivonne Maria Reynolds and Dr. Laura Sudarsky.

 

 

Looking Forward

It’s been just over a year since I stopped living my life in fear of cancer. It’s been incredibly liberating. I know that I’ve done everything in my power to ward off this putrid disease. Of course, my mind more often than not thinks of my own daughter and son and the genetic testing results they may eventually receive. Specifically, in regards to my daughter, I don’t have a definitive answer about how I plan to advise her about her choices, but I do know whatever she decides, I’ll be there every step of the way.  On the upside, modern medicine is in the very early stages of developing vaccines and possibly oral medication to prevent inherited cancer. HeritX is an organization solely focused on finding a preventive therapy for inherited cancer – and ultimately other cancers – using the BRCA gene mutation. (www.heritx.org)

This journey has also created a deep passion in me to help other women and make sure they understand the options available to them. I’ve since had the honor of participating in an edition of Dateline Health presented by Nova Southeastern University. You can see the video here and it really delves into genetic testing thanks to Dr. Lauren Carcas of Florida Cancer Care. https://www.youtube.com/watch?v=5QQY-vGdBjc  I’ve also had the privilege of working in partnership with some amazing non-profits to raise awareness for breast and ovarian cancer and have spearheaded support groups.

My work with BRCA Strong, the support group I founded, brings me immense fulfillment. I’ve seen first-hand the positive difference a support group makes in the lives of women facing down tremendous fears. The community we’ve created is place Previvors come to share advice, and frankly, we are laughing and crying by each other’s side much of the way. My wish is that no one ever be faced with this type of journey. But for those that do, they should never feel alone when facing down the fear of a potentially fatal diagnosis. I will continue to make it my mission to do everything I can to help educate women, network them with the right foundation and physicians and support them as tremendously brave Previvors.

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