The story of Dana
In late 2010 I had been struggling with intermittent left sided abdominal pain. Over the next 2 years I went through numerous doctor’s visits and tests – all inconclusive and I was told that I most likely had a neuroma or scar tissue from a previous abdominal surgery. Early in 2013 I began to actually feel a lump the size of a walnut to the left of my navel. Again, a flurry of appointments and tests followed. By April 2013 I pushed for a cat scan and surgical consult as the worsening pain was affecting my daily routine and the mass was now visibly protruding from my abdomen. My cat scan showed a softball size mass that was tearing through my left rectus muscle in my abdominal wall. Although the radiologist’s impression suggested that this was not likely to be a neuroma or hematoma, but a possible desmoid tumor, my surgeon dismissed that impression citing “those tumors are so rare you have a better shot of hitting Powerball.” We proceeded with a biopsy prior to impending surgery to be certain “what we’d be cutting into”.
On May 7th, 2013 I returned to the surgeon’s office for my biopsy results and received the devastating news that the pain I had been feeling on the left side of my abdomen for over two and a half years and the mass that had been palpable for a couple of months was not the previously thought neuroma, hematoma, or hernia, but in fact a desmoid tumor, a very rare non-metastasizing sarcoma that affects 900 newly diagnosed Americans each year. So rare – that the surgeon sat with me at his computer to search the internet for information on desmoids so he could best explain it to me. Both he and a partner told me “we read about them in the literature, but have never seen one”. Knowing that both these surgeons trained at the prestigious Mayo Clinic, I felt at a loss for words. It was 6 months before my wedding day!
Both my husband and I are medical professionals – I, a registered dietitian nutritionist and my husband, a family practice physician. Even with our clinical backgrounds, trying to navigate through the next few days after the diagnosis was daunting, trying to absorb all the information and determining where next to turn for treatment options. I cannot imagine how much harder it is for patients who do not possess the clinical knowledge and contacts we had access to.
The next few weeks became a blur of more tests, doctor’s appointments and second opinions. I will forever be grateful to the Desmoid Tumor Research Foundation and the Facebook patient support group, The Desmoidian, for all of the information, guidance, and support. It was through these connections that I was able to determine the best providers to meet with and the types of questions to address about treatment options.
After weighing all the options, on June 4, 2013 a team of surgical oncologists and a reconstructive surgeon at Fox Chase Cancer Center in Philadelphia, PA removed my desmoid tumor, now weighing close to one pound, along with my entire left rectus abdominal muscle and had to rebuild my abdominal wall with a 12x10cm piece of biological mesh and muscle tissue from my right abdominals. I spent nine days in the hospital, and underwent a second emergency surgery to repair an intestinal obstruction that developed after the weight of the tumor being lifted left space for my intestines to twist. My surgeons were able to get the entire tumor out with negative margins all around – which means at this time I do not need chemo or radiation as other desmoid patients sometimes must endure. Even with this good news, I know that I am not out of the woods yet, as desmoids have a nasty habit and a high incidence of recurrence. I am currently taking sulindac to hopefully lessen my risk of a recurrence.
It is because of the high rate of recurrences, the rarity of these tumors, and the devastating effects they inflict on their victims that I am reaching out to others any way I can to gain support for the desmoid sarcoma patient community, the Desmoid Tumor Research Foundation, and their research and patient education and support efforts. Like many rare diseases, research funding is the key to finding a cure.