Royce Epstein

Survivor

In August 2014 at age 45 I was diagnosed with breast cancer after a routine mammogram. The radiologist called me into her office to say that there is an abnormally shaped cluster of calcifications in my right breast that to her looked like early cancer. She showed me on the screen what looked like a constellation of stars. Right away a biopsy was scheduled. I had been through this before four years prior, when I had an estrogen-based tumor removed from my left breast. That tumor was benign, and yet the experience was harrowing. This time around, I had just moved to New York the year before, my Mom had moved across the country, and I was in an intense job. Upon hearing those words from the radiologist, I burst into tears and thought I really don’t have it in me to go through this one more time. Little did I know how wrong I was. The biopsy was different than the one I experienced prior. This new tumor was embedded deep at the back wall of my chest, and it was hard to see and challenging to get to. My breast had to be compressed in a mammography imaging machine so that a special magnifying screen could be used to help locate the tumor, all while I had to lay perfectly still for hours. I was on my stomach the whole time, only able to see my left hand. I was terrified and had no one there but a nurse to hold my hand. Right then and there I decided to get a tattoo on the inside of my left wrist to always remind me to be brave. I had never wanted a tattoo nor thought much about them, but that day I had tremendous resolve to get one. It was a way for me to take back control of my body while I was feeling very out of control. I left there that day with bruises on my chest and ribs from the procedure, but I found a small bit of strength that day, which I was going to need. A long and torturous three days later, my gynecologist called to tell me that the biopsy results came to her and she is sorry to tell me that I have breast cancer. She told me that I was diagnosed with Lobular Carcinoma In Situ (LCIS for short) and she recommended that I see Dr. Axelrod at NYU Langone Hospital. I left work early, called my parents, and made my appointment. My Mom flew up to be with me and together we went to meet Dr. Axelrod. And so began my education in breast cancer. Dr. Axelrod and I went over the results and my health and family history. She assured me that LCIS is not considered a true cancer, because although it’s a cluster of abnormal cells, they haven’t turned invasive yet to where they could spread. She recommended surgery to remove the tumor, no treatment needed. This was a huge relief and my Mom cried happy tears. However, LCIS is usually considered a marker for future breast cancer. I had other markers: my paternal grandmother had breast cancer, I had estrogen and uterine problems throughout my life, and I am Jewish of Eastern European descent. This is where I learned about the BRCA genes, which with all my markers, seemed likely that I could be a carrier. I was referred to Dr. Smith at NYU Langone, who is a Genetics Oncologist. Through Dr. Smith, I did genetic testing and consultations about estrogen, my biggest enemy in this whole story. Meanwhile, before the LCIS diagnosis, I was planning on having a hysterectomy. I had been diagnosed in my 20s with a painful and debilitating uterine disorder called Adenomyosis, which is a thickening of the uterine walls. I had already made the decision that I wasn’t going to have children and there was no point in waiting any longer. When I discussed this with Dr. Smith, she recommended that I proceed with the hysterectomy and be sure to have my ovaries removed, as estrogen is food for breast cancer and would cut my risk in half of getting breast cancer again in the future. A couple of weeks later, I drove to Williamsburg, a ten-minute ride from my neighborhood in Brooklyn, to get my tattoo. I wanted the word BRAVE in a simple banner on my wrist. I met Fernando the artist at Flyrite Tattoos, plunked down the cash, and while the Pet Shop Boys were playing on the radio, Fernando went to work. I was fine for the first twenty minutes, until adrenaline set in and I started to sweat and feel faint. I needed a drink of water. I had to be brave. Once we resumed the last ten minutes were fine and we were done. My tattoo was coming with me now for the rest of my cancer adventure. So the date was set – September 4th, where both Dr. Axelrod and Dr. Reddy, my gynecologist and also a surgeon, walked me side by side into the OR where I would have back-to-back surgeries. Right before that, I had to get a wire placement inserted into my breast so that the surgeon can locate the tumor and it’s margins. From everything I have been through, this was the most challenging, because it involves having metal wire sewn into your breast with local anesthesia while you are standing under compression at the mammography machine. I have had this done twice in my life now, and I can safely say I never want to have this procedure ever again. After that experience, walking into the OR was a relief. I was anxious to get the surgery done and put this whole experience behind me. Dr. Axelrod went first, removing my tumor, which took about an hour. After that, Dr. Reddy started doing a laparoscopic hysterectomy but ran into complications because she found that I also had really bad endometriosis, and all of my internal organs were stuck together with overgrown endometrial tissue. So what would have been a two-hour surgery became a seven-hour surgery, and all the tissue had to be cut out the old fashioned way, leaving me with a 7” scar as well as the four others from the laparoscopic portion. As Dr. Reddy put it: “It’s like a bomb went off in there”. I was in the hospital for four miserable days, and couldn’t wait to be able to go home to recover in my own bed with my beloved dog Sherman at my side. Six days after my two surgeries and two days after I was home, I hobbled into Dr. Axelrod’s office for a check up on my stitches. Robin, the nurse cleaned my wounds. I asked her if my biopsy reports had come in. Robin checked the computer and saw that the results just loaded into my chart. She was visibly shaken when she read the results and she immediately left to talk to Dr. Axelrod. I knew right then it was bad news. Dr. Axelrod sat me down in her office to tell me that in the tissue they removed they found a second tumor hidden behind the LCIS, and this one is diagnosed as Ductal Carcinoma Invasive (DCI for short). That’s the bad kind of breast cancer. Dr. Axelrod was shocked, they hadn’t seen this tumor in my mammography imaging. Invasive is the one word you never want to hear. My brain pretty much imploded then and my body had a very visceral response. I called my parents to tell them the news. This, I promise you, is the hardest thing you can do in life, to tell your parents that you have cancer, this time for real. Of course I spent a lot of time pondering how this happened. I grew up in the suburbs of New Jersey with a fertilized lawn and ate Doritos and drank soda. I consumed a lot of sugar. I didn’t exercise. Dr. Smith told me that it’s not one thing that you can point to – obviously lifestyle is an important factor, as is genetics, your body’s natural responses to things, and of course exposure to pollution, toxins, etc. What’s important now for me is to do something about it. She recommended that I do cancer-preventing things like change my diet, try to exercise even a little, and most importantly keep moving forward on my appointments and treatment. That advice I still keep with me, to keep moving forward. Even when you’re sick. Even when you’re exhausted. Even when you’re scared. Even when you’ve cried so much you can’t get out of bed. Keep moving forward. There were many next steps. The first was to see if the cancer spread. Dr. Axelrod was concerned too that since they didn’t see that tumor, maybe there are others. She ordered three sets of x-rays and an MRI, which is much more sensitive than mammography. I had to wait to heal before I could do the MRI, since it requires laying face down for a half hour. I also had to heal before I could have my next surgery to remove lymph nodes from my arm pit, which is how you check if breast cancer has spread. I had that surgery mid October, and my Mom flew up again to be with me. The day before surgery, they injected radioactive pellets and blue dye into my breast and then waited to see when the radioactive material goes into my lymph nodes. Another fun procedure! This is how the surgeon can find the lymph nodes – they use a Geiger counter of sorts to know where to cut you open. The hospital gave me a card saying that I had radioactive material in my body in case the police stopped me and confused me for a bomb-making terrorist. While all that was going on, I also needed to get the results of my genetic testing, to see if I had BRCA or any other gene mutations that cause cancer. This information is critical to determine the path of treatment. One last bit of information my doctors needed is called an Oncotype. My invasive tumor was sent to a lab in California that tests for the likelihood that the cancer could return, and if chemo would be of any benefit. I had an excellent prognosis, at 8%, which is considered low risk. Chemo was not required. And my tumor had good features. It wasn’t aggressive, it was slow growing, and it was estrogen positive. Enter Dr. Meyers, my new oncologist. She sits right next to Dr. Axelrod and is on the team with Dr. Smith, and together determined what the best course of treatment would be. Assuming I didn’t have BRCA, radiation was now on the table for discussion, or the alternative, having a mastectomy. But I’m getting ahead of myself. Waiting for test results when you have cancer is excruciating. Every test is a hurdle that needs to be cleared. So I waited to hear if I had BRCA. Negative. This was great news for several reasons. I had just had the hysterectomy and breast surgery, and didn’t want to have a mastectomy and give away more of my female body parts. I am still today wrestling with the emotions about not being able to have children and somehow feeling less feminine, so for me having a mastectomy would have been beyond devastating. I waited to hear the results of the Oncotype. I waited to hear the results of the MRI. I waited to hear if the cancer spread. One by one, I cleared each hurdle. It’s a pretty great day when you hear that the cancer didn’t spread and your lymph nodes are clear. So there was now no reason to have a mastectomy, I got to keep my breasts and for this I am extremely grateful. I do joke now that I have all these scars (eight total on my torso) that my stripper days are over. My doctor was horrified when I tried that joke out on her, I had to insist that I was kidding. My next adventure was treatment. This involved Radiation, where I met Dr. Perez. Basically radiation alters the DNA chain of cells so any cancer cells that my have been left behind after surgery won’t be able to replicate if they’ve been zapped by the radiation beams. I had some options. Typically radiation is six weeks long, every day Monday through Friday. Because I was young and healthy, I was eligible for a shorter period of radiation – three weeks, although I would be getting the same six weeks dose. I was offered the opportunity to be part of a study that was looking at delivering extra radiation, called “a boost”, aimed directly at the tumor site. I jumped at the chance to be part of the study – for one, I welcomed the extra boost of radiation, but I also felt strongly that I didn’t want to have had this cancer experience for nothing. If some good could come out of my treatment for other patients, then why not participate? After a set-up session where your torso is measured with lasers like something out of a sci-fi movie, and then your skin tattooed with dots for the laser positions, I was ready to begin. So I got six weeks of radiation plus the boost each day for three weeks. I did this in December after my scars were healing. So every night after work, I went to the NYU Langone Cancer Center for treatment. My Mom texted me most nights when I was waiting to go in, it’s like she was there with me. I did a lot of research and Dr. Perez told me what to expect. At first not much happened other than I felt a little tired. But then on schedule the redness started, like a bad sunburn, and fatigue set in. I was so exhausted that it was challenging to take the subway to work and treatment, so I was grateful when I would get rides to the hospital. When I finished radiation, it was almost Christmas and that’s when my side effects were at their worst, with blistering and rashy skin. I used calendula cream which worked great and today you’d never know that I had radiation except for a very faint line that looks like I had a tan. The mental toll of doing treatment, however, was more taxing. It’s a drain to go every night, see the same people, some really suffering worse than you, and try to be positive. But I met some incredible ladies that refused to let cancer get them down, and I was proud to be part of my new club. The staff was amazing, especially Maria, the technician who administered my treatment the most often. On my first night she asked me if I wanted music, she played Journey for me. I started bringing my ipod and of course DJ’d my own sessions with long time favorite songs. Once treatment was finished and I was healed from that, Dr. Meyers my oncologist put me on medication to block estrogen in my body. The medicine is called Femara, the post-menopausal version of Tamoxofin. I will be on it for at least five years, maybe ten depending on the results of a large study coming out later this year. The medicine prevents any residual estrogen from becoming food for any cancer cells that may be in my body. There are some side effects, the worst is that I pretty much have the body of a 70 year-old woman now, with sore joints and bones. My hands and legs are especially affected, which can be challenging some days when I want to play guitar and my hands won’t cooperate, or I have to walk up and down stairs, or I sit or stand too long. I have to get a bone density scan every year now too, along with all my follow up appointments that include mammograms every six months, MRIs and ultrasounds every year, and exams and blood tests every four months. And yes, did you catch that now at 46 I am post-menopausal? So my body, while healing from the surgeries and radiation, was also going through menopause and I had maybe ten hot flashes a day. Now things have settled down and my body has adjusted somewhat, so maybe I get two or three a week, not too bad. I still have numbness in my abdomen, and occasional stabbing pains in my chest muscles, but I am hoping that will subside over time. It’s an adjustment having this new body. While I was demoralized through this whole experience, I tried to stay hopeful, patient, and know that everything I was doing was to save my life and create a healthier one for my future, no matter how much time is left. Cancer is a very lonely place. While I had family and friends with me most of the way, ultimately the journey is yours alone. It’s your body, and your fate to face. This feeling can be very overwhelming, as it was for me, and I tried to embrace it rather than let it engulf me in sadness. But I was plenty sad too, and my Mom often told me to stop feeling sorry for myself. I knew I was lucky – we caught the cancer before it spread, I didn’t need chemo, and I had a great prognosis. I am so grateful for the amazing team of doctors I had – and still have – to keep me healthy. They have become part of my family, as I see them on a regular basis and they are so happy to see me overcome this terrible disease. And it is a terrible disease. One in eight women will be diagnosed with invasive breast cancer (for men, it’s one in 1000). The cliché you always hear from cancer survivors about life is really true: that once you’re diagnosed, your life comes sharply into focus and all of a sudden lots of things aren’t important any more, and other things become more important. You learn to appreciate each day as it comes. People around you show their true colors, good or bad. I had many friends remind me who I am, and what I’m made of – for that I’m also grateful. I realized that I was a strong spirit in a vulnerable body, but that was temporary. I wanted to find some meaning in my experience. I also want to work hard to have a better future and not take it for granted. I went to a nutritionist at the cancer center and changed my diet. I lost 17 pounds and no longer eat Doritos. I take vitamins and supplements to support my new body. I walk a lot, and I contemplate exercising, which still may not ever happen. I got myself out of some stressful places and into better ones. And I keep playing guitar. Like Dr. Smith told me, Keep Moving Forward, just keep going, one step at a time.