It’s the end of October and I’m sick of the color pink despite all the good intentions behind it. 8 years ago I survived triple negative breast cancer, so you would think I would be fervently pinkalicious. But instead, it conjures up an anxious reminder laced with survivor guilt that I dodged a bullet.
Enter Wendy Nielsen and her wonderful project called October Stories, where she profiles a collection of women at different stages of treatment and recovery, one of them being mine. Her project is about moving forward, and it reminded me how helpful it is to anyone touched by the disease to hear other people’s stories.
So in that spirit, I’m passing mine along with the Top 10 things I would tell you or my best friend should you find yourself fighting in the pink trenches of breast cancer.
1. Early intervention is critical! If you have a lump, don’t allow your doctor to dismiss it because you’re too young or don’t have a family history. Hey, chances are it’s nothing, and even if it is breast cancer, it’s highly curable when caught early. But don’t let your doctor dismiss it because you’re “too young” or take a wait and see attitude. Breast cancer tends to be more aggressive in young women and is often diagnosed at a later stage because they’re “too young”. I was 36 when I was diagnosed and while I thought I was “too young”, it broke my heart to have chemo buddies in their twenties, two of which didn’t make it.
2. Make sure you’re being treated at a breast or cancer center. Breast cancer surgeons and specialty centers are more sensitive to the insidious nature of the disease. In my case, after my mammogram came back suspicious, my OB/GYN wanted it biopsied right away, so I was sent to the first available surgeon, who happened to be a generalist. “Yeah, I do some breast, but I really like a challenging colon and don’t get me started on livers,” she told me, looking kind of bored by my straightforward boob lump. The surgeon performed a standard fine needle aspiration and told me she wasn’t sure what to think because it didn’t behave like a cyst when she withdrew the liquid. My juice was cloudy and the lump didn’t implode afterwards, which usually points to cancer. Only my results came back negative. I was told “you can get it taken out if you want, you seem like the anxious type”. Uh no thanks; what makes me anxious are condescending doctors and surgery. So I moved on with my cancer free life until bam, my mom got diagnosed with breast cancer a week later. In the spirit of easing my conscious, I decided to get the lump removed a few months later. I went back to the same general colon loving surgeon who afterwards said “It looks benign. I’m on vacation for the next two weeks, so call for results, but doubt there’s anything to worry about”. A week later on a hot Friday in August I’m listening to her partner say, “I’m afraid there’s a malignancy, and it’s a particularly aggressive form known as triple negative”. The worst part was that sucker grew substantially between my initial mammogram in May and my surgery in August. How could this have been missed? Turns out my malignant tissue was mixed in with benign (not uncommon) and the darn needle missed the good stuff. I later learned if I had been at a breast center, I would have gotten a core biopsy, which takes a hole punch of the tumor so it’s less invasive than a lumpectomy, but much more accurate than an FNA.
3. Your pathology report will be your playbook for treatment. I used to think of breast cancer in terms of stages, but soon learned there were close to 200 different sub-types of the disease. Understanding the personality of your particular monster is critical to being in control of your treatment options and asking the right questions. For example, not all hormone receptor positive breast cancers require chemo. Conversely, most triple negative breast cancers respond very well to chemo. If you’re HER-2 positive, there is a drug called Herceptin which must be part of your treatment protocol. Breastcancer.org has a printable worksheet of how to read your pathology report which can be found here in detail. The most important things to know are what type of breast cancer you have, your hormone status, whether you’re HER-2, what stage the cancer is and whether the cancer has spread to the lymph nodes or blood stream. You’ll also find that you start to define your breast cancer self by the type of cancer you have, like a dog tag of sorts. Around the chemo suite we were more known more for our cancer type and age more than our name.
“Hi, I’m stage 1, triple negative, 1.6cm diagnosed at 36, double mastectomy with bilateral TRAM recon, dose dense AC/Tac. They call me Becca.”
I’m also a Gemini who likes hip-hop and guacamole, but no one cares much about that when you’ve got an IV of Adriamycin dripping into your arm and you’re getting the dish on nipple reconstruction. To the uninitiated, this might sound weird, but it was rather comforting swapping information with your breast cancer tribe.
4. However, you won’t know your “bigger cancer picture” right away. Your initial pathology report will give you about 70% of the picture and is a great jumping off point for discussions about treatment. But there’s usually more testing and waiting involved before you get the bottom line of your prognosis. In my case, we started with the assumption was that my breast cancer was stage 1. But, I had to get a baseline bone scan, PET and CT scan of my abdomen, pelvis and brain. If cancer was found, that would mean my tumor had metastasized and I would be stage 4. This would also mean I might get chemo prior to having surgery, if at all to see how the tumor responds to chemo. My scans came back squeaky clean, but the next hurdle was finding out if any lymph nodes were involved. I wouldn’t know that until they physically removed them from both arms during surgery. This could tilt me into stage 2 or 3, depending on how involved. 19 clean lymph nodes later, I remained at a very relieved stage 1, but the anxiety from weeks of waiting was excruciating.
5. Before you begin treatment, get at least three different opinions. I ditched my colon loving general surgeon the moment I heard I was malignant. I wanted a breast medical team that matched my take no prisoners attitude. After spending too much time on the Internet, I knew that I wanted a double mastectomy with immediate reconstruction given my triple negative status. Never again did I want to wonder what my boobs were up to. Plus, I had a toddler to raise and at the very least, needed to stick around long enough to get him into a good kindergarten. My chief concern was getting the best breast surgeon, plastic surgeon and oncologist I could find. My second was finding one who took my insurance because I didn’t have $250K hidden in my mattress. I decided to pay out of pocket for a consult with four of the best doctors available, just for peace of mind. And then, go with one covered by my insurance who agreed with the course of action. And here’s something you should know. Memorial Sloane Kettering is one of the best cancer centers in the world, but they don’t take insurance. However, MSKC does see newly diagnosed patients for free. Their pathologist reinterprets the tumor slides so you get a second opinion on your diagnosis, and a breast surgeon will give you a recommended course of action. MSKC agreed that a double mastectomy made sense considering my age and how aggressive my disease was. The next trick was finding a plastic reconstructive breast surgeon that not only was good, but was available the same day as the breast surgeon for the operation because both surgeons need to work hand in glove. Again, see a few doctors to understand their approach. I chose one that was comfortable performing a bi-lateral TRAM which is like a tummy tuck and new boobs in one. (More on that in a future post).
6. Survival statistics are better than what we have now. You might be freaked out about your survival stats or hearing how aggressive your particular disease is. Before you let that get you down, understand that survival statistics are based on longitudinal data from twenty, thirty years ago, before drugs like Herceptin and the taxanes were even available. So think of yourself as a future statistic; one who will likely rewrite the rules of what survival looks like, no matter what your stage.
7. Limit your time on the Internet unless you’re searching for specific information. There are terrific sources of information on line. My personal favorite is Breastcancer.org. Sites like this make the Internet a beautiful, empowering place. However, approach the support forums with caution even though they can also be a great source of comfort. Online support forums are usually organized by stage, age and tumor type. Stay with your specific stage, age and diagnosis group to avoid unnecessary worry. For example, I would wander into general triple negative forums and find threads with headlines like “Do triple negatives survive more than 5 years?” I stumbled in looking for reassurance, but what I got was tinder for my anxiety and a subsequent prescription for Ativan.
8. Mastectomy, chemo and baldness suck, but it’s not the end of the world either. I don’t want to make light of losing one or both breasts; it’s hard on many levels. But desperate to find a silver lining in this whole mess, I opted to see reconstruction as an upgrade and briefed my plastic surgeon to give me Halle Berry’s breasts. Hey a girl can try. I didn’t get close, but I’m not half bad either. The good news is that tremendous progress has been made in breast reconstruction during the past decade. Scarring can be minimal and in some cases you can even keep the nipple. Yes, you lose the sensitivity of the breast, but they’re symmetrical (if you get a double) and because the breast tissue is gone, you won’t have to worry a new breast cancer popping up. Chemo can feel like Mike Tyson assaulting your body from the inside out, but there are treatments to help. I mention this because they’re not always given as a matter of course. The nausea was bearable thanks to Aloxi and Emend and I was able to not live in fear of germs thanks to Neulasta (although you have to inject yourself in the thigh which my toddler found hysterically funny). Acupuncture was a God send. It helped my surgical pain, made me relax and complimented the anti-nausea meds. The best part was this was covered by insurance. And as far as being bald, let’s just say it took me out of my beauty comfort zone. I realized I can do bald and find the pretty in it. I rather liked my slightly bad-ass self, especially when opening the door for the pizza guy. I found solace in scarves because wigs made me look like a stripper. The downer here wasn’t being bald, it was the two years of having Peter Brady hair. But it all came back eventually.
9. There is no right or wrong way to deal with breast cancer. Everyone handles cancer differently. Anger was my most powerful weapon. I was an open book and complained to anyone who would listen. If you wanted to see my new boobs, I would show them too and point out plans for future renovation like I was redoing my kitchen. I didn’t skip a day of work, not because I’m a martyr, but because writing creative briefs and Power point presentations were petty distractions. My mother on the other hand, curled up in a ball and crawled under the covers for several months. She wouldn’t open up and internalized everything. And that’s fine too because that’s how her cancer self rolled. What makes me wince are the well-intended folk who spread the gospel of positive thinking. The last thing you need is any guilt for not feeling positive. Your job is to get thru treatment, that is all. Not to make others feel better about your situation. I also cringed when people would tell me how brave I was. Isn’t bravery when you willingly put yourself into harm’s way? Our men and women in the armed forces are brave. Me, I didn’t choose breast cancer. All I did was do whatever it took to get the job done so I could raise my son. And I was scared shitless.
10. The aftermath is hard; don’t be shy about asking for help. Those first three years were the hardest for me as I shifted from fighter to survivor. It felt like I had PTSD. Initially, I was uncomfortable with my new physical self; my foobs (cancer code for fake boobs), my Chia Pet hair and because I had TRAM reconstruction, I required extensive physical therapy in my abdominal area.
Then there was the added bonus of being in premature menopause because I had my ovaries removed as a precaution. Not only was I dry as a desert in all the wrong places, I had the hormone level of a 10 year old. Sex with my new body was awful. I don’t care what they say about the brain being the biggest sex organ, do you know how much porn I had to watch to get in the mood? And this was before Tumblr.
But the worst was the anxiety I felt inside. Every time I had a pain, my mind jumped to cancer, and wondered when the other shoe was going to drop. If I had a backache, it would get progressively worse until my oncologist told me the scan was clean. Then it would completely disappear. The fear was crippling.
Flash forward to today.
After 8 years I’ve passed some major survival thresholds and have adapted to my new normal. I’m keenly aware of the gift I’ve been given, but worry every day I’m squandering it. Right or wrong, I’m afraid the universe will pay me back if I don’t live up to being a survivor. I’m not sure what good looks like in terms of being a survivor, all I know is that I’m just as flawed as I was before I got cancer.
I still fall prey to putting more meaning than I should into my career. I’m not a fitness junkie, love a good glass of wine and complain when Starbucks makes my latte with 2% instead of skim. I’m vain, I can be snarky and sometimes gossip. I bitch about middle age and crows feet.
I’m not a better person. I’m a different person who’s gone thru something hard.
But, I know what I’m made of. My strengths, blind spots and vulnerabilities are well illuminated. I know what spooks me. I know when I’m kidding myself and need to take action or ask for help. And I’m humbled to have caught this deadly disease early and to have access to the best medical care in the world. It blows my mind what doctors and science can do. I’m humbled to have had cancer happen to me and not my son (knock wood). I have a good grasp on the person that emerged from the cancer war, although it took me a long time to figure out who she was.