Christina's Patient Journey: Desmoid Tumor

In this video, Christina, an artist, educator, and self-described "accidental advocate," shares her experience living with a desmoid tumor, a rare, locally invasive soft tissue tumor that forms in the body's connective tissue and is also known as aggressive fibromatosis or desmoid-type fibromatosis. She describes the uncertainty of her initial diagnosis, the multiple treatments that did not work, and finding a therapy that has helped keep her tumor stable. 

Christina shares her story during Desmoid Tumor Awareness Month to build understanding of this rare disease. She reflects on the importance of seeing a sarcoma specialist and seeking a second opinion, and on the role managed care professionals play behind the scenes in making treatment accessible and easier to navigate. Eight years after her diagnosis, she has embraced a new normal, one that looks different but is no less joyful or worth living.

This video is sponsored by SpringWorks Therapeutics.

AMCP's Patient Journey Collection shares real patient experiences with disease, treatment, health care access, and the health care system to help managed care professionals and health care decision-makers better understand the patient perspective and the role they play in improving access and outcomes. These patient stories are part of the award-winning AMCP Patient Voice Initiative. These stories amplify the patient voice, driving meaningful change in medication access and care, while raising awareness, influencing policies, and empowering others facing similar challenges. To add your story or to discuss opportunities to support the patient voice initiative, contact our team.

 

Transcript: 

Speaker: Christina
00:00    My name is Christina. I live in New Jersey with my tiny dog, Daisy. I'm an artist, educator, and accidental advocate, and I'm living with a desmoid tumor.

00:15    A desmoid tumor is a rare soft tissue sarcoma, and what's unique about it is that it falls into this category called intermediate grade soft tissue sarcoma. So in some ways it acts like cancer. It can be very locally aggressive, but it does not metastasize like a traditional cancer would.

00:34    About nine years ago, I started having some weakness on my right-hand side, as well as some feelings of pinching and discomfort during my yoga class. I went to a family doctor, and I was told it's nothing to worry about. It looks like a lipoma. You can have it removed. So I had an attempted lipectomy, and coming out of the surgery, the surgeon told my mom that it was confusing and that he didn't find a lipoma when he went in there. I eventually ended up at university-level healthcare, where they told me that I very likely had a kind of sarcoma, and that's when I was diagnosed with a desmoid tumor.

01:17    I honestly had no idea what to think, and when I Googled, I got so much mixed information. I was told that it was benign, but my thoracic surgeon who diagnosed me told me that this was a kind of cancer. So I didn't know what to believe, and it felt like even though I was one step closer to answers, I still didn't have all the information I was looking for.

01:35    So I was presented with two main courses of treatment, and those choices were really between surgery and treating it with oncology medication. The surgery would have been incredibly devastating to my body, and then still there would be no guarantee that my tumor wouldn't come back because they recur so frequently. So I went with the option which was to start using an oral chemotherapy.

01:58    The first three I tried were not successful. I ended up doing a year of infusions, and while that was slightly successful in helping control the growth, it ultimately didn't bring me what I wanted.

02:11    So my wonderful oncologist said, "There's this drug that I think you will really benefit from." I can take one pill in the morning, one pill in the evening, and be totally covered, as compared to needing to go take at least a half day, sit in an infusion chair, and jump through hoops to be seen.

02:29    My positive experience is specifically the result of the managed care community, the people that are working behind the scenes to make so much of this drug administration not only possible, but easy. I have to do virtually nothing on my end, and I have my drug delivered to me. I'm extremely grateful for all of the passion and the energy that goes into making that happen.

02:56    Somewhere along the line, I started calling myself an accidental advocate because this is something I would've never chosen for myself, and that's the case with most people with rare diseases. It is the worst club with the best members. I'm the loud voice in a crowded room where people otherwise aren't talking too much because those were the voices that I was listening for when I was first diagnosed.

03:19    The first thing that I would tell somebody who is a newly diagnosed desmoid tumor patient is that they should absolutely see a sarcoma specialist. And the other thing I would recommend that they do is get a second opinion. You wanna confirm the course of treatment that you're on.

03:35    I'm so grateful that eight years after my diagnosis, my tumor is stable. The growth is controlled, and while I do have side effects, I'm able to lead a relatively normal life. My new normal looks a whole lot different than the life I led before, but it's no less worth living and no less joyful, quite frankly.

04:01    I'm Christina, and I'm living with a desmoid tumor.