Jones hero

A Steep Hill to Climb: Adventurer Overcomes Rare Sarcoma Diagnosis

When Tiffany Jones learned that a bruise on her chest was actually dermatofibrosarcoma protuberans, a rare sarcoma, she turned to City of Hope for help

As an avid rock climber, Tiffany Jones knows what it’s like to face an uphill battle. Successful climbers must be determined, focused and resilient, overcoming physical and mental challenges. Each climb demands a strategic approach, careful planning and perseverance.

The fearless adventurer also does wing-walking, in which she leaves the safety of a vintage two-seater plane’s passenger seat to walk the wings during flight.

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Tiffany Jones wing-walks to celebrate surviving cancer.

“I am being my best when I'm adventurous, courageous and in flight,” she says.  “It's hard to put into words what wing walking feels like, with its heart-pounding bird's eye view. Unbuckling my seat belt in a 1940s-era biplane, climbing up onto the wing, and securing myself while traveling 70+ miles per hour at 4,000 feet in the clouds is indescribably breathtaking.”

For Jones, the skills she has refined over years of practice proved invaluable when she was diagnosed with a cancer so rare that the first hospital she visited was unable to treat it.

A One-in-a-Million Dermatofibrosarcoma Protuberans Cancer Diagnosis

Jones, a business owner, executive coach, wife and mother of two who lives in El Segundo, first suspected something was amiss when a mysterious bruise appeared on her chest and would not go away. While she sought help from doctors, her concerns were consistently brushed off. Some thought it was a keloid; others thought it was just persistent bruising. No one took her seriously.

When the bruise began to change shape, however, Jones finally received the support she sought for so long. By this time, it was 2013, and Jones had been searching for answers for years. She went to a Los Angeles-area hospital where her medical team decided to do a biopsy of the spot. Jones was diagnosed with dermatofibrosarcoma protuberans (DFSP), a rare and slow-growing malignant soft-tissue sarcoma affecting approximately 1,000 people annually in the U.S.

Jones was relieved to finally have a diagnosis, but there was one problem: Her care team was not quite sure how to treat such a rare disease. So, she was referred to City of Hope®.

Understanding Sarcomas

Upon her arrival at City of Hope, Jones was placed in the care of Vijay Trisal, M.D., Dr. Norman & Melinda Payson Professor in Medicine, a surgical  oncologist and City of Hope’s system chief clinical officer.

“When I got there and met Dr. Trisal, he was really funny because he said to me, ‘You have this diagnosis called dermatofibrosarcoma protuberans, which you've never heard of because only one in a million cases of cancer is this type of cancer. But it's all good. You're one in a million.’”

Though Jones’ cancer was uncommon, Dr. Trisal was confident that he could successfully treat her and remove the sarcoma that had plagued her for years.

Tiffany Jones
Tiffany Jones with her oncologist, Vijay Trisal, M.D.

“At City of Hope, many of these rare cancers get referred to us, and DFSP is very rare. DFSP falls into the group of diseases called sarcomas, which are cancers of connective tissue — the fat, muscle, blood vessel, bone, cartilage — all the connective tissues in the body,” Dr. Trisal explained.

Sarcomas are categorized based on their tissue of origin (e.g., osteosarcoma for bone, liposarcoma for fat and leiomyosarcoma for smooth muscle). DFSP develops in the middle layer of the skin, known as the dermis.

“If you break down the name of the disease, dermato means skin, fibro means scarring, sarcoma means the connective tissue cancer that I talked about and protuberance means protruding outside the skin,” Dr. Trisal said.

“Think of sarcomas as a big basket of hundreds, if not thousands of different types of diseases, and all of them have their unique characteristics. Because there are so few diagnosed in this country every year, we lump them into one group. We separate them out from other cancers because sarcomas traditionally don't go to the lymph nodes. They don't follow the same pattern that carcinomas follow.”

Treating DFSP

Jones underwent surgery to remove her sarcoma, performed by Dr. Trisal, followed by reconstruction by a City of Hope plastic surgeon.  

“I did have two young kids at the time, which was a little bit frightening. But you know, City of Hope has such great resources. This is what they do: Tthey provide hope for people. So, I knew I was in good hands,” Jones said.

During the eight-hour surgery, Dr. Trisal removed a large chunk of Jones’ chest wall, and then the plastic surgeon used a tissue flap to cover and repair the damaged area.

“It was a very intensive surgery, but I trusted Dr. Trisal’s recommendation and his foresight to say if we can get all of it and go deep enough and go wide enough, we will be able to avoid radiation, which is exactly what happened. We've been able to avoid radiation for all this time, which I'm very, very grateful for,” Jones said.

Since 2013, more has been discovered about sarcomas, and there are now additional treatment options, thanks in large part to patients like Jones.

“When Tiffany came, all we knew was you have to cut it out, get a good margin, do radiation if necessary and then figure out what happened. This was more than a decade ago when we treated her,” Dr. Trisal said.

“Today, we have a much better understanding of DFSP and the genetic mutations that lead to it, due to people like Tiffany allowing us to study their tissue. Now, we know a lot more about sarcomas, and we have developed a lot more drugs to treat them.”

Healing From DFSP

While Jones had a successful surgery, when she first woke up, she did not think she made it through.

“I woke up, and I could hear a harp — like an angel's harp. Like you would think of in heaven. I really thought I didn't make it through this surgery. Then a nurse came in, and she sat next to my bed. She told me there was a harp player in the hallway, playing all by herself, and I had to come out and see her,” Jones recalled.

But Jones was convinced she could not get up. She was exhausted, weak and confused as she came out from under sedation. Her body had been through so much, not just during the procedure but throughout the preceding years as well. Getting out of that bed felt impossible, but something her nurse said motivated her to try.

Tiffany Jones
Jones returns to rock-climbing.

“The nurse told me that your healing starts when you get up,” Jones recalled. “It took me what felt like hours to get out of bed, but she kept saying the harpist was waiting for me. When I finally stood up, I was like, OK, I can do this.”

When Jones made it to her hospital room door and looked into the hallway, the sight took her breath away.

“There was a harpist playing, and then I looked back. I saw all the other cancer patients that needed to get out of bed also, and we were all standing there, you know, trying to heal. And so, I often think, not only of Dr.  Trisal and all the nurses, but of that harp player, too. That’s the person who helped me with my healing because I got out of bed.”

After Jones stood up, she eventually began to climb.

The healing process took a lot of time, patience and physical therapy, and when Jones was finally able to rock climb again, it was an emotional experience. It was special not just because Jones was back doing what she loved, but also because during her time in the hospital, her daughter had grown to love the sport as well.

“My daughter and I started rock climbing together. It was amazing! Rock climbing is just the ultimate sport that requires so much upper body strength in your hands and stretching, and it really requires all of me. I give it everything. And I am able to give it everything thanks to the City of Hope team.”

Today, she looks forward to her biannual check-ups with Dr. Trisal, “who reassures me that we’re a team and I’m in the best hands at City of Hope under his care. My experience when I visit is positive, caring and filled with love.”

And last fall, it all came full circle for Jones when she completed a special wing walk for City of Hope, calling her campaign “Flight of Courage” because, she says, “It takes incredible courage to be faced with a cancer diagnosis and go through the healing journey.”