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2 reviews

Review for Chordoma Foundation, Durham, NC, USA

Rating: 5 stars  

In 2013 my daughter Madison then 18, was diagnosed with chordoma. We did what everyone does when they hear an unfamiliar word… we Googled it, and learned chordoma is a one in a million tenacious bone cancer. Thankfully we live close to Los Angeles near many outstanding cancer centers, and we consulted with most of them. Unfortunately they all suggested differing treatment approaches, which was both frustrating and frightening. How do you even choose which path to follow; everything felt like it was falling apart.

I found the Chordoma Foundation and spoke with a Patient Navigator. She impressed upon me that given the complex nature of Madison's disease, she would need to be treated by a multidisciplinary team that treats chordoma routinely. I was given names of three referral centers and after assembling copies of medical reports and MRIs, we met with two teams in person and had a telephone consultation with the third. To our amazement, all three recommended the same approach! While another surgery would be required along with radiation, we finally had a consensus from chordoma experts, versus differing opinions from several highly prestigious cancer centers.

We could actually exhale for the first time in months. Only after we found the CF did it feel like things could actually fall in to place.

Role:  Volunteer

Review for Chordoma Foundation, Durham, NC, USA

Rating: 5 stars  

I'm the father of a 20 year old young woman who was diagnosed with chordoma in 2013. After surgery to stabilize her neck and remove a very benign looking lesion, pathology concluded a chordoma, an extremely rare and relentless bone cancer. As most terrified newly diagnosed cancer patients and families probably do, we researched treatment options endlessly on Google and learned that there was a lot of inconsistent "information" on the web. After many deep dives in a quest for consistent information, I noticed that most of what was on the web was very old. Where's a source of truth? Is anyone is doing research or is this an orphaned disease? Can anyone provide complete treatment plan? We next learned that my daughter's tumor wasn't removed completely… the two tumor remnants were left behind and growing rapidly. We met with many local experts, but they didn't have any chordoma experience given its rarity… so endless referrals and lots of blank faces, then more referrals.

We finally found the Chordoma Foundation, learned an incredible amount of current information from their team, and leveraged their website which has tools like a doctor directory of qualified chordoma experts. We received support and engaged specialty centers, ultimately traveling across the USA for treatments on the east coast, the best fit for my daughter's scenario. As we battle this extremely rare and tenacious cancer, we continue learning about the extended research being driven by the Chordoma Foundation: They promote global cross-institutional collaboration by expert medical teams, have numerous measurable accomplishments, and guide families like mine to find the best treatment options available.

I feel that Chordoma Foundation helped save my daughter’s life.

Role:  Client Served