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Annamarya Scaccia

My stomach, swollen and on fire. The incisions, healing, burn. Too much pressure, and it felt like they will rip apart. My belly, round, in a perpetual state of fullness, pregnant with remnants of fear and freedom.

My stomach is forever changed. It bears old scars, from teenage years and coming-of-age depression. But now five new scars cast wide shadows over these wounds, engulfing my body in sorrow and joy.

Last year, on September 30, at around 11:30 a.m., I learned that I had renal cell carcinoma – that I was among the roughly 74,000 Americans to receive that diagnosis last year. Less than a month later, I would have a radical nephrectomy, offloading a tumor roughly the size of my thumb and the left kidney it attached itself to. More than six months later, and I’m healing quite well—physically, at least. My 6-month labs and scans were clear; I hope they stay that way.

That’s survivorship: managing the constant fear of the worst-case scenario. At first, it’s hard to temper the anxiety; eventually, you learn to shove the fatalism down and smile for the cameras. But it’s always there, lurking in the background. Even if you are an eternal optimist, you will still carry this burden—every survivor I know does.

That’s the thing about cancer: the odds are never in your favor—not really. When I went in for my surgery on October 26, my urologist expected to perform a partial nephrectomy. My tumor was small—less than 5 cm. I was stage 1, and there was no spread. But when he went in, he saw that the tumor grew to close to the renal artery and vein. If he left even a small portion of my kidney, he told my boyfriend after the surgery, he risked leaving behind some cancerous cells—cells that would spread and fester and attack other parts of my body. He hopes that, by removing the entire left kidney, he has “stopped this thing in its tracks.” This hollow space—this dark cavity—now means a single-digit reoccurrence rate: upwards of 3%.

Annamarya’s Instagram post reads: “Today marks six months to the day that I had my radical nephrectomy…”

I know I, and other survivors of chromophobe renal cell carcinoma, should find solace in this small probability. But chromophobe renal cell carcinoma (or chRCC) is a rare form of kidney cancer, accounting for only 5% of cases. We have all survived a rare form of a rare cancer; that 3% might just be your bad luck.  And unlike other more common forms of cancer, there is hardly any research on chromophobe renal cell carcinoma. Other than surgery, there are no definitive treatments in fighting the disease—only promising possibilities. We can’t afford to lose our remaining kidney if the cancer comes back; we couldn’t afford to lose the first one in the first place.

But survivorship means more than living my life in a permanent state of chaotic peace—an unsteady sway between gratitude and pain. I also must navigate the ramifications of a life-altering experience.

My son is forever traumatized; anytime I have a doctor’s appointment, he’s afraid I’m going to die. My relationship has been tested and pushed to its brink; we’re strong, but there’s still so much we don’t understand. And I now live my life under constant surveillance; the function of my remaining kidney is 64%, which is low but still in normal range. If I want to prevent chronic kidney disease, I need to pay close attention to what I eat.

It’s hard, sometimes, to not come undone by what’s been left behind.

In the mornings, when I’m getting ready, I will look in the mirror and follow this new topography of my stomach. I will look at the scars with an uneasy grace, knowing that each peak and valley formed because of an illness I never knew was there. I will look at it and wonder if there was ever a “before.”

More than six months later, and my stomach continues to be hard to process—to understand. The folds invade this space, once smooth and flat and hard. Navigating the contours of an unexpected detour, my fingers tracing lines never meant to exist. A daily reminder of what I have lost—and everything I have gained.

This guest post is by Annamarya Scaccia, a writer, fitness expert, and kidney cancer survivor. Follow her on Instagram @stillwellfitness.

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10 thoughts on “The scars of survivorship”

  1. Hello Annamarya,
    I was diagnosed with RCC chromophobe in 2011 and had my left kidney removed (10 cm mass!). My kidney function is similar to yours so I eat heathy, exercise, and keep blood pressure and sodium low. I also have the physical scars and so far have had no recurrence. Just wanted to let you know you are not alone and to remain positive.

    1. Thank you for taking the time to read and for sharing your experience. Knowing I’m not alone—that we’re not alone—helps get me through.

  2. “That’s survivorship: managing the constant fear of the worst-case scenario. At first, it’s hard to temper the anxiety; eventually, you learn to shove the fatalism down and smile for the cameras. But it’s always there, lurking in the background. Even if you are an eternal optimist, you will still carry this burden—every survivor I know does.”

    This line – man does that hit home for me in ways i cant even begin to explain. Just reading it can cause tears to start to fall. I lost my left kidney to a 10cm tumor in 2008 (at age 32) and no evidence of recurrence until Feb 2021 when i went in for my regular scans – confident i was past the worst of it – i mean 12 years… how could i get recurrence now. And BAM, 2 new tumors on my right, solitary kidney. I had a partial nephrectomy april 5 and now i am back in the cycle of fear and doctor appointments. Its hard to not fall into the darkness…

  3. Thank you for taking the time to write this. I was diagnosed with RCC February of 2022. Im having surgery April 1st 2022. The urologist suggested possibly keeping my kidney and just removing the mass but still the possibility remains that my right kidney will need to be removed.

    This is my second cancer diagnosis in less then 2 years. I was first diagnosed with uterine cancer when I was bleeding uncontrollably and my hemoglobin dropped to 5.9 and I had to get blood transfusions.

    After my hysterectomy a tumor was found on my uterus and I was sent for genetic testing which came back positive for lynch syndrome.

    Im struggling with wrapping my head around all this and can’t help but think what’s next?

    Until you experience the news of you have cancer, one will never understand the devastation you immediately feel.

    Cancer sucks!

  4. Hi! I’m 6 weeks into this experience. Left radical 5 weeks ago. 16cm Chromophobe. High grade PT3a . This tumor was, let’s say, ambitious and an overachiever.
    I’m still in the “I’m in shock phase”. Pretty scared it will return.
    First oncology apt Aug 8.

  5. I was just diagnosed with chromophobe yesterday and I’m trying to find similiar individuals in my situation. I am only 25 year old and just recently got married and had 3 babies in 3 years. I am at a lost for words of the diagnosis. I go in Monday the 8th to remove the 7.0 cm mass on my left kidney. I am thankful for this page I have found!

    1. Sending you big hugs! I hope your surgery went well and you’re now in recovery. Feel free to reach out to me on FB so I can connect you to our group of survivors.

  6. I was just recently diagnosed with 8 cm chromophobe. I am awaiting surgery and having trouble sleeping. They plan to laparoscopically remove my right kidney. I am fearful of a painful recovery and worried it may spread. Hoping my surgery is sooon

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