Tag Archives: BRCA1

Why I Posed Nude on National TV

The vision came to me in the shower. I saw myself standing naked at the mouth of an open cave in front of a reverse halo of blackness. Charise was there too, crouched down to take my picture. I remembered seeing her at that art opening last spring, and the open invitation to do a nude photo shoot. Maybe I should give her a call soon. Then, as these synchronicities tend to happen, she called me the very next day. She excitedly told me how she was just contacted by the Megyn Kelly Today show, and they wanted to feature her work, The Grace Project. She wanted to photograph me the very next week. Not only would I be posing topless for a photo shoot, but would be filmed showing my mastecomied chest— the after effects of breast cancer— to the entire world on NBC. To my own shock and disbelief, the word “yes” tumbled from my mouth!

I thought I would never, EVER pose topless on national TV. But I was never ever going to get breast cancer either, like Viola, the grandma I had never met.  She was ravaged by breast cancer and passed away at 58, about a year before I was born. I grew up hearing the myth, “Cancer often skips a generation,” but lived like I had fingers stuffed in my ears—la-la-la-la! Besides, I ate clean organic food, and I went to the gym. I was impervious to breast cancer until I found that lump in my breast when I was 36.

When my 3 year old son scampered over me, his little kick to the chest area drew my attention to this lump, the size of a nickel near my left areola. Even then I refused to think cancer. It must be a swollen lymph node from all the recent dental work, I thought. I was working as an office manager at a small chiropractic office at the time, and the doctor had just decided to drop our medical coverage a month before. It can’t be cancer. I can’t even go to the doctor right now.

Some divine timing took over because this happened to be 2014, the first year that enrollment in insurance marketplaces opened up, thanks to the Affordable Care Act. It would be another 5 months until I successfully navigated the goliath marketplace website, got a referral to a breast surgeon—and faced the fact that all the lymphatic massage and homeopathic medicine in the world wasn’t making this lump go away. In May of 2014 that illusion of cancer invincibility came crashing down with a diagnosis of an aggressive grade 3, stage 1, triple negative breast cancer.

I was the first woman in my line to benefit from the advances in genome mapping, and the first to test positive for the BRCA 1 gene mutation. Now I could make choices knowing that I had an 85% risk of cancer recurrence if I kept any breast tissue, and that I had an elevated risk of a few other cancers. We found out my mom was also BRCA 1+, and she was able to have a prophylactic surgery, hopefully sparing her of ever getting breast cancer.  She told me how at 15 years old, she was terrified of her breasts and begged her pediatrician to remove them, even after seeing her mother’s butchered chest. Here she was finally getting her wish at 58, the same age her mother had died.

Charise Isis is half way through her mission to photograph 800 women who have had breast cancer and mastectomies, because that is roughly how many women are diagnosed with breast cancer each day in the U.S. But I couldn’t even consider being photographed when my friend first told me about The Grace Project in August of 2014. I was home nursing my incisions and steeling myself for the chemo treatments ahead. I looked like a Frankenstein Barbie with these hard, immovable implants shoved under my pectoral muscles, fresh red scars forming where my nipples once were and snaking towards my armpits. I was scared and angry at the absurdity of cancer. Some of The Grace Project women were smiling. All of the women in Charise’s photos looked so brave and strong. Would I feel this way someday too?

It would be a lie to portray this as one simple surgery. I had a Port-a-Cath installed and later removed—this would deliver the chemo right into a major artery or vein for distribution throughout the body. Then there was the infection in my breast and the ultrasound guided needle extraction to relieve some pressure, nerve-wrackingly close to my silicone implant. There was the round of IVF with egg retrieval to harvest some of my eggs before the chemical tsunami hit. I also had an augmentation surgery to make my chest more symmetrical. Then right before my 39th birthday I had my ovaries removed to protect against ovarian cancer, another high BRCA 1 risk.

I desperately wanted to move on with my life, but even though my hair grew back and I was rebuilding strength and stamina, there was still this looming cloud of fear and uncertainty. With triple negative cancer, there is this sense of being on high alert for 5 years following a diagnosis. If it comes back, it might do so in a big way, showing up in my bones, brain or organs. But if I can make it to this magic 5 year mark, the statistics show my chances of getting cancer drop back on par with national averages.

Cancerversaries, those dates of diagnosis, surgeries, and first or last treatments are very triggering for a cancer survivor.  That’s why I decided to get my chest tattooed on the 2nd anniversary of that July 14th mastectomy. I didn’t go for nipple tattoos either. For me faux nipples were a mocking symbol of pain and loss. To take that date back in a powerful way, my tattoo artist, Miranda Lorberer, helped me create a gorgeous design that would be mine alone. We created a sprawling organic design inspired by the fine linear Indian Mehndi tattoos, that combines spirals and florals and peacock feathers together. As she worked the ink into my skin, she told me how her dad had died of breast cancer when she was in high school. I could feel his presence in the room that day.

I met Charise in person at an art opening last fall. Seeing her beautiful images on large pieces of silk was otherworldly, like skin printed on skin, soft, flowy and feminine. I was still not one of the women in her pictures, but now I had a secret under my shirt. After having my breasts brutalized by surgery, after being poked, prodded and clinicalized by doctors at countless appointments, they were finally mine again. I felt rare and exotic, and wanted to keep my breasts secreted away for the boudoir. I was not ready for the camera.

Then came the call about the Megyn Kelly show. For a brief moment I felt scared to death to be filmed and photographed nude. Then I remembered I had already looked death in the face, and something broke free in me. I coach people every day to make powerful choices, to take meaningful risks. This was not a time for me to hide out. This “yes” was a resounding answer from deep in my cells, calling me forward to some unknowable place. I thought of the woman facing down her surgery, or sitting home hating her surgical drains and icing her chest. Maybe she would see my picture and begin to imagine her place in this world beyond the inky black uncertainty of her cancer diagnosis. Maybe I could offer a little hope when the light is dim.

I prepared for the photo shoot that day with a long bath, thinking about the talking points I wanted to cover while the camera crew filmed us. I made a mental list as I shaved and moisturized. I wanted to mention CharityNavigator, to think beyond pink ephemera when donating money towards cancer causes, and avoid those foundations that absorb a majority of funds towards administrative costs. I wanted to mention that often metastatic cancer research is underfunded—only 2% of funds going towards metastatic research is such a meek sliver of hope on the fundraising level. I wanted to encourage people to support local oncology programs, and individuals living with cancer in their own communities. I hoped to mention my coaching work and my blog, Melissashealinghope.

It was clear the producer had a very specific moment in mind, and my talking points were moot. With the cameras on me I felt raw, exposed, and vulnerable. I wondered how I would look. Who would see this? What would people say? This powerlessness was eerily reminiscent of those weeks around my diagnosis, when my hopes about having a certain surgery or working with a specific doctor were dashed. I was seeking a second opinion at Sloan Kettering when I learned that nipple sparing surgery wasn’t an option for me, that the ducts met in the nipple and could leaving them could lead to a cancer recurrence. Ironic how I could only be shown topless on TV without these little pieces of flesh, my innocent nipples offensive to my body and to the viewing public.

Standing there with the lens focused on me, Charise asked me to close my eyes, to breathe and feel my feet on the ground. Her soothing voice told me to send grounding roots deep down underground, and the camera jitters began to ease. With my eyes on the horizon, the camera crew faded. I thought of Milyn, Champagne Joy, and Karen. Once here, and now gone, leaving inexplicable holes where there used to be life. I thought of my friends still in the grips of their diagnosis, held in this dance between worlds. The cool air on my skin brought me back to the moment, and I looked into the camera. I never want to forget what a miracle it is to be.

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When You Cut Away the Risk, What is Left?

What is TRUE and what is just convenient to tell your patients? Is there a lack of current data, or does my doctor lack understanding in this particular area? Is it just too uncomfortable and inconvenient for her to tell me the truth or is she worried about legal culpability, imagining some future lawsuit and her malpractice rates going through the roof?

What do I do when my doctor questions my resolve for a certain type of surgery by tossing into the air a supposed added risk of a rare uterine cancer for some BRCA1+ women? I am not comforted when I probe her for statistics and data and she has to consult her computer, looking for articles to back her up. She prints out a huge stack for me to comb through later. My face glazed over as she wondered out loud, “why keep your uterus when you’re not having more babies anyway.” When she launched into, “why keep your cervix either when it might pose a risk” she saw my frame freeze up and finally stopped talking.

Perhaps I am not your average patient, although I’d like to think we are an army rising. We are a new breed of informed healthcare consumers who ask the tough questions, who pour through articles and medical abstracts combing for statistics and hard data. It is no longer enough to sit back and eat the words of our most trusted doctors. My blind faith in the omnipotent knowledge of my medical team is as strong as the threads their diplomas hang by.

I take home the big stack of articles and try to find the evidence she pointed out. Very little was in there that could help me, but it did lead me to further research online. I found a study that was done where women who tested positive for the BRCA1 and BRCA2 gene mutation were followed for a period of time. They did find that out of the 296 BRCA1 women in this study, 4 of them developed uterine cancer. 3 of them were breast cancer survivors. Interestingly, 2 of them had used Tamoxifen as part of their breast cancer therapy.

That article, from March of 2014, also cited data from an even larger study, one done with 10 times the number of patients. In this one, of 4456 women with BRCA mutations, the increased risk for endometrial cancer was restricted to those who had used tamoxifen. The article concluded by saying that, “hysterectomy should not routinely be recommended as a part of prophylactic surgery for BRCA1 and BRCA2 mutation carriers”.

Thankfully, I never did take Tamoxifen, although it was presented to me as a choice. I was sent home with a pamphlet about it and told to think it over and to let my oncologist know my choice at the next visit. I don’t remember anything explicit about the added risk of high-grade, aggressive uterine cancer in either that conversation or in the pamphlet. Tamoxifen “may protect you” from a breast cancer recurrence did not compute for me after having recently gone through a complete double mastectomy and finally through the other side of 5 grueling months of chemo. I decided my body needed a break from chemicals.

Why would both my gynecologist and gynecological oncologist throw this idea of hysterectomy into the arena when this is not the current accepted practice? I am trying to moderate between educated choice and a “do no harm” philosophy. If decisions are based on risk assessment, the panicked voice in my brain asks, WHAT WILL THEY WANT TO CUT OUT NEXT? The idea of facing the blade for a bilateral salpingo-opphorectomy is taxing enough, knowing I’ll be thrust into surgical menopause overnight. Cutting out my uterus feels much more invasive, not something for my gynecologist to flippantly brush off by saying how easily it “slides right out of the vaginal canal” at the end of a laparoscopic surgery.

I hold onto my abdomen, imagining my uterus quietly inside me and think about the cycles of the moon. There is no howling storm approaching, just the emptiness that once housed my son’s growing body. Where the hell is my crystal ball? I want to make the best choice, an educated choice.

If we severed parts of ourselves anytime we felt risk, what would be left?

uterus

*This blog and this post is in no way offering medical advice to anyone, but merely reflecting the feelings and insights of the author. Nothing can replace your own research and conversations with your medical team and circle of support.

To review the articles and data referenced in this blog, go to:

http://www.medscape.com/viewarticle/822542#vp_1

http://www.ascopost.com/issues/december-1-2013/reasonable-but-not-required-for-women-with-brca-mutations-to-have-hysterectomy-concurrent-with-salpingo-oophorectomy/

http://www.cancer.gov/about-cancer/causes-prevention/genetics/brca-fact-sheet#q3