Wednesday, October 23, 2013

MY STORY: I'm more than just breasts

I've seen the power of Facebook in action. I knew it had the potential to reach a wide audience, and that was exactly what I was looking to do when I contacted Hudson Valley photographer Tamme Stitt. I told her about my diagnosis and how I wanted some dramatic shots for when I went public with the news that I had bilateral breast cancer. I've always felt comfortable around Tamme and even more so with her potentially shooting other cancer milestones along the way -- post-mastectomy photos, the effects of chemotherapy, etc. I knew, with the right words and images, I could turn my crappy diagnosis into a call to action for my friends to take charge of their health.

When I first set out as a health writer, I made a promise to myself that I would never put a subject in a position that I myself would refuse to be in. So, in effect, I've made myself an open book. If the families of Alzheimer's patients refused to discuss the reality of dementia--that they had to change the adult diapers of their once fiercely independent mother or father--then I'd share my own grandmother's story of Alzheimer's. In that same vein, I find myself today talking about my breast cancer journey. Women are not always comfortable with uttering the words “double mastectomy” or discussing what exactly reconstruction entails. I’m OK with it because I don’t think it’s something to be ashamed of. Boobs are just tissue and fat. And I’m more than that.

Below you will find my original Facebook missive. It outlines my story and what I hope becomes a rallying cry for every woman out there. We're mothers, we're wives, we're sisters, we're aunts...we're everything to our families, and it's time we stood up for ourselves.

What’s it like to be 36 and recently diagnosed with bilateral breast cancer? Let me tell you, it sucks.

I got that face-draining, gut-punching call on October 2 from the breast surgeon, who had the results of my three biopsies in her hands. “I’m afraid it’s not good news. You have DCIS or early stage breast cancer in your left breast, and invasive cancer in your right,” I remember her saying through the ringing sound that had suddenly started in my ears. I was devastated, thinking immediately that if I died soon, my 4-year-old Fio would only have vague recollections of me and those big “yum yum kisses” I liked to plant on his face and tummy. And little Nora? She would only know me as the woman frozen in time in family photographs. I can’t die yet, I thought. I have to live to see my kids do great things in life, and to grow old with my husband.

Though lumpectomy was certainly an option, I decided to take this head-on. Given how young I was, my family history of breast cancer and the fact the cancer was in both breasts, I was at peace with my decision to move forward with a double mastectomy. It wouldn’t necessarily improve my survival rate, but it could reduce the chance of recurrence. I know some people may criticize this choice, but here’s the thing about cancer: You never know how you’re going to handle it till you’re faced with it. And I was facing it with two kids too young to lose their mother and an amazing husband too young to be a widower.

So on October 30, I will check into Hudson Valley Hospital Center in Westchester and undergo double mastectomy with immediate reconstruction. After the breast surgeon removes the breasts, the reconstructive plastic surgeons will then step in and take tissue from my abdomen and re-create “the girls”—a procedure called DIEP flap. All told, I will be on the operating table for seven to nine hours. I will spend several days in the hospital, with one night in the ICU to monitor for any potential blood clots, which sometimes like to form where the plastic surgeon rejoins arteries. How invasive, or what stage my cancer is, will be determined after surgery; what my doctors find will also dictate any subsequent treatments, such as chemo or radiation. At home, I will drain my ports—four total, surgically implanted to help facilitate tissue healing—and try my best to move on, though I know, even if remission is my end result, I will forever be looking over my shoulder.

I’m telling everyone this for one main reason: I want you to send me money. Just kidding! What I want is for every person on my friends list who reads this—every woman and every man who has a woman he loves—to be proactive about your health and your family’s health. Breast cancer has been indelibly linked to my family. My father’s mother, aunt and sister all died from it. The latter at only 46 years old. I’ve always suspected something was amiss, that bad breast cancer genes were there. Still, despite what seemed like damning evidence, my old ob-gyn dismissed me. “You don’t have a first-degree relative with it,” he said, and that was that. My risk of developing breast cancer was supposedly no higher than the average woman’s. But what if I had the BRCA gene? That raises the risk of a host of cancers, namely breast and ovarian, and it can be passed from father to daughter. If my grandmother passed it along to my dad, I had a 50/50 shot of inheriting it –and a world of potential problems. I don’t have my genetic test results back yet, but I feel as though I already know the answer. (If I do test positive for the BRCA gene, my ovaries will be removed, too.)

So here’s my PSA, and I can’t stress this enough: NEVER LET A PHYSICIAN OR ANYONE ELSE DISMISS YOUR CONCERNS. Find one that listens to you, who wholeheartedly forms an equal partnership with you for the betterment of your health, not a parent-child-type relationship. Had it not been for Dr. Meedlen Charles, the first doctor who ever urged me to get a baseline mammogram and get genetically tested, this cancer would have likely grown till it was too late for effective treatment. I never had a lump; I still don’t. The mammogram picked up a cluster of microcalifications in the left breast, and a follow-up ultrasound found the invasive mass in the right. The biopsies only confirmed what I had suspected, staring at that mammogram screen and the suspicious cluster of white specks: That I had cancer.

I had originally sought help from Dr. Charles because I was experiencing many of the symptoms of ovarian cancer. As a health writer, I diagnose myself with at least 10 ailments a day. But given breast cancer and ovarian cancer are linked, and given my family history, I wanted to make sure. An MRI deemed a cyst on my right ovary benign (though it will be checked in six weeks to be on the safe side), so I guess that makes the cyst something of a miracle. Had it not been for those symptoms, I would have never seen Dr. Charles, never have gotten that mammogram—lots of things would have never taken place. I don’t like to think about it.

Ladies, we’ve fared poorly for far too long when it comes to our health. We’re underrepresented in clinical trials, it is not uncommon for our symptoms and concerns to be written off by the medical community, and we often neglect our own health to take care of others. It’s time for that to stop. Most insurance companies follow Medicare/Medicaid’s lead and pay for a baseline mammogram at 35. Get it. If you have particularly dense breasts (which many younger women do) or a family history of breast cancer, request breast ultrasound or MRI. And fight till you get it. Demand genetic testing if your family history warrants it. This is life and death we’re talking about here. As for me, I am hoping to be the first Connors woman able to call herself a breast cancer survivor.


  1. I found your blog via facebook because I'm following Tamme Stitt's page and just read all your posts starting from newest to latest. I just went through a horrible year with my daughter (she's 12) who was diagnosed with a rare malignant liver tumor and had a liver transplant in February (she's doing well now!) I also blogged about it and that really helped get me through - I'm glad you're blogging about this. Your writing is superb and funny (and heartbreaking). But I'm really, REALLY glad that I read this post because my father's mother, sister and niece (my first cousin) all had breast cancer. My cousin died at 27 from it. I've always been dismissed when I raised this concern that I might be susceptible to it. I even put off getting mammograms because no physician ever seemed concerned (I'm 42). I finally got my first mammogram last year - but only because I had to - I was being screened to be my daughter's living liver donor. After reading this, I'm not going to miss anymore mammograms.

    1. Firstly, I'm so happy to hear your daughter is doing so well. You've got a little fighter there - kids are so friggin' amazing. Secondly, I want all the names of your physicians so I can slap the crap out of them. This is EXACTLY what I'm talking about. I'm not sure if some docs out there are just oblivious to current research or what, but it seems some of them are letting women like you and I slip through the cracks. I shudder to think how many more women are walking around out there, totally unaware that they are carrying a ridiculously elevated risk of breast cancer/ovarian cancer. I urge you to press for genetic testing if you haven't already - insurance likes to push back but they usually end up paying if you have those three relatives on one side of the family presenting with breast cancer (doesn't matter the age at diagnosis, or whether they're "first degree"). I would also suggest that you talk to your doc about adding breast ultrasound to the testing schedule (MRI, even better!). If my left breast DCIS hadn't decided to throw down those calcium deposits, mammogram would have never picked up on the cancer. Breast ultrasound found the two growths. I wish you continued good health and strength, and tell your daughter SHE ROCKS!

  2. I would like to say that this blog really convinced me to do it! Thanks, very good post. breast cancer surgeon Los Angeles