Kamneev's Story

Facing sarcoma with a team of young adult sarcoma experts in her corner

Patient Stories
kamneev-patient-story

It’s not common to find relief in a cancer diagnosis, but Kamneev Rai admits that was her first reaction.

“I was in such a crazy amount of pain and no one believed me. Finding the tumor in my pelvis proved that my intense pain was real,” says Kamneev. “I didn’t see cancer as death, I saw it as something to overcome.” 

A distressing pain

Kamneev originally suffered through her pain in her pelvis area thinking it was related to a prior injury. It was only after over-the-counter medications, physical therapy and chiropractic care stopped providing relief that she sought additional medical help. Unfortunately, her first provider misdiagnosed her, but a family friend intervened and arranged for an appointment at Rush. 

Kamneev’s first appointment at Rush included a hip MRI that revealed a mass about the size of a grapefruit in her right pelvis. A biopsy confirmed the diagnosis — Ewing sarcoma, a rare bone cancer that most often occurs in children and young adults. 

Just 24 years old, Kamneev first met with pediatric medical oncologist Paul Kent, MD. “From the day they discovered the tumor to my meeting with Dr. Kent was less than two weeks,” Kamneev says. “Dr. Kent was incredibly helpful. He knew about Ewing and its treatments — not just at Rush, but around the world. He made me and my family feel comfortable at a time when everything was new for us.”

A pause in life

Kent shared advice that stuck with Kamneev throughout her treatments. “He said that there are four things he believes help you beat cancer. The first two are your medical team and your psychological health. He recommended therapy and offered to connect me with resources at Rush,” says Kamneev. “But he also reminded me of the importance of a support network and accepting help. His last recommendation was spiritual connection, so my family and friends formed an interfaith prayer group that was instrumental to my healing.”    

As someone known for her independence, Kamneev felt empowered to accept help because of Kent’s advice. Her support network included her sister, her parents, and countless friends and family members. 

Still, facing treatment and an uncertain road ahead was daunting. “I didn’t like the idea of pausing my life,” she says. “Everyone else seemed to be moving forward while I was stopped. And all that I wanted to do was to see and do more.”

Kamneev’s drive to do more builds on her already-long list of accomplishments. A talented violinist, she graduated with both business and music degrees before living overseas working for and performing with the Baltic Academies Orchestras. 

During her more than three years living in Estonia, she traveled extensively, visiting more than 50 countries. It was during a visit to Africa that she had an “epiphany,” in which she felt drawn back to Chicago to spend more time with her family. This decision — which she made about eight months before her diagnosis — might have saved her life.  

Navigating cancer as a young adult

Kent’s first step toward treatment was to pull together the right care team for Kamneev. Although Kent has significant Ewing expertise, his patients are often younger. So, he connected Kamneev with medical oncologist Marta Batus, MD, who leads Rush’s adolescent and young adult sarcoma program. This specialized program helps bridge the gap for patients, ages 15-39, who are facing cancers common in children but require a combination of both adult and pediatric treatment approaches.  

“My family and I had a good feeling about Dr. Batus from our very first meeting. I just knew she would be phenomenal,” Kamneev said. “That’s one thing I never took for granted — I trusted my Rush care team right away.”

However, Kamneev was not expecting her care team’s first recommendation for her care. “Because the tumor was in my right pelvis, Dr. Batus suggested that I consider fertility preservation,” says Kamneev. “Harvesting and preserving my eggs would give me the best opportunity for a family in the future.”

Certain cancer treatments, including the surgical removal of organs needed for pregnancy and concentrated radiation near reproductive organs, can cause temporary or permanent infertility. So young adults facing these cancers often choose to preserve their fertility to have the option of having children when they are ready. 

“I was young, single and had just traveled the world — and suddenly I had to decide whether or not I’d have children in the future,” remembers Kamneev. 

Fertility preservation

Batus recommended that Kamneev meet with reproductive endocrinologist and infertility specialist Mary Wood Molo, MD, at the Rush Center for Advanced Reproductive Care. Not only is the center one of Chicago’s longest-running fertility programs, but Wood Molo has experience helping cancer patients navigate decisions related to fertility preservation. 

“When I met with Dr. Wood Molo, I didn’t know anything about the process,” says Kamneev. “She really educated me, walking me through different options that could allow me to have a family someday.” 

Kamneev appreciated how well-researched Wood Molo was and her ability to explain facts and procedures in a way that made sense to someone outside of the medical field.  “But what Dr. Wood Molo really stressed was that I am in control of my own body,” says Kamneev. “During our first meeting she made it clear that she would support me no matter what I decided.”

After thinking it over and talking to friends and family, Kamneev decided she wanted the option to have children in the future, and she chose to move forward with fertility preservation. She underwent a process similar to in vitro fertilization (IVF), during which injected medications stimulate your body to produce a large number of eggs for a retrieval procedure. After the procedure, the eggs undergo cryopreservation, using very low temperatures to “freeze” the eggs and keep them intact until you’re ready to start a family.

“I’m so glad I chose to harvest my eggs,” says Kamneev. “There is still so much I want to do before having kids, but I’m glad to have this possibility for my future."

Sarcoma treatment

After completing fertility preservation, Kamneev prepared for her cancer treatment. Batus recommended a combination of chemotherapy and radiation — a treatment plan that spanned about one and a half years. 

“I was actively involved in my treatment plan and Dr. Batus welcomed this,” says Kamneev. “She really trusted my knowledge of my own body and was very open-minded to additional treatments that I would suggest to help manage side effects.” 

Because of her travels, her Indian culture and her mom’s knack for researching new treatments, Kamneev adopted a blend of western and eastern medicine practices to make her body best suited for cancer care. Batus partnered with her to make sure any alternative treatments did not conflict with chemotherapy.  Kamneev was impressed with Batus’ support for this approach and how knowledgeable she was in these practices. 

“My goal was to recover as fast as I could because I had my life planned out after treatment,” says Kamneev.

Quality of life

Not one to stay still for long, Kamneev started applying for graduate school during her treatment. Her cancer diagnosis had sharpened her passions, and she recognized her purpose is to share her love of music with others. She started her music master’s degree program with one month left of chemo. 

Kamneev’s optimism shines when she talks about this time in her life. “It was actually perfect. Rush had just extended its Cancer Center hours, so I would hop back and forth between my medical appointments, classes and my performances,” she says. “It was a lot of Uber rides, but Rush was able to accommodate my schedule so I could pursue something that I love.” 

Despite not playing music for a year, Kamneev was committed to mastering the violin again. However, a side effect of her treatment was neuropathy, weakness or numbness due to nerve damage. After regaining feeling in her hands and feet during recovery, she still struggles with numbness in her fingertips.

Losing feeling in your fingertips would end the career of most violinists. But Kamneev rose above, relearning how to play her instrument using spatial intelligence and new muscle memory. She also works with her physical therapist to rebuild her hand strength so that she can play for longer hours at a time. 

Full of hope

Kamneev is now in remission. “My Rush providers are family. They’ve seen me at my worst, and now I want them to see me at my best,” she says. “They are truly inspired individuals who want the best for their patients.”

And Kamneev’s initial fear of cancer pausing her life? “I was able to visit 12 countries between my recovery and the start of COVID-19 travel restrictions,” she says. “I want to see all the world has to offer.”  

Related Stories