The road from cancer diagnosis to treatment and post-treatment isn’t a direct route. As this testicular cancer survivor shares in his story, along with the roadblocks and detours, life with cancer is a rollercoaster.
Testicular Cancer Survivor: “Life is a Roller Coaster”
At age 25, Niket Desai seemed to be winning at life. While a student at UC Berkeley, he and his friends had created a startup tech company and sold it to Google, assuring his financial and professional success before even graduating from college. In September 2012, Desai was at Google headquarters presenting a new project before a large audience. As he stepped off the stage to loud applause, his phone began vibrating in his pocket. It was his doctor calling to tell him he had testicular cancer.
“I was at the top of the world and about to fall off the biggest mountain and I had no idea,” said Desai. “Life is volatile like a roller coaster. But you want to watch it, not be on it. You need to detach as much as possible and try not to go down emotionally.” Desai says he has had many more ups and downs since then.
His journey had begun a few weeks before the Google presentation. During a yoga class, he felt something like a pinch near his groin. He went to the doctor who found that Desai had an enlarged testicle, which can happen for several reasons including injury or infection. He sent Desai to a urologist who ordered tests that can diagnose testicular cancer.
Eventually, Desai would learn he had a mixed germ-cell tumor, a type that tends to grow and spread quickly and doesn’t respond as well to treatment as other, more common types of testicular cancer do.
Things can get worse
Desai says he’s learned to try not to feel so down emotionally when things are bad because they can always get worse. In November 2012, Desai had surgery to remove his left testicle. He hoped that would be all the treatment he’d need, but his pathology report showed lympho-vascular invasion, which meant the cancer was likely spreading. He would need more treatment and had some tough choices to make: either have a complicated surgery called retroperitoneal lymph node dissection (RPLND) or get strong doses of chemotherapy.
He decided on the surgery. RPLND removes lymph nodes from the abdomen to check whether they contain cancer. He hoped the cancer hadn’t spread, that the lymph nodes would be clear, and he could avoid the strong chemo.
But 80% of the lymph nodes tested positive for cancer. Desai needed to start the intensive treatment, and soon. Two days after surgery, his doctor put it this way: “You’d better get up and walk because you need to be healthy enough to start chemo.” Desai got out of bed.
On New Year’s Eve, Desai went out with friends to greet 2013 and he remembers that they partied like it might be their last time. A few weeks later, he started chemotherapy. The side effects were tough, and included hair loss, fatigue, anemia (low red blood cells), taste changes, weight loss, and depression. “Chemo is relentless; it wears you down,” said Desai. “Surgery is like boxing and chemo is like wrestling. It’s one thing to take a punch that is surgery. Chemo wears you down until you’re crushed.”
By his third week of chemo, Desai had begun to stay in bed more and more. He stopped showering. He didn’t want to socialize. He woke up early one morning and it hit him that he may not survive. He considered stopping treatment. “I didn’t want to die,” he said. “I just didn’t want to live anymore.”
Desai shared his thoughts with his parents, close friends, and health care team who helped pull him through that day – and the next, and each day through the rest of his chemotherapy.
Things can get better
Desai’s last chemo treatment was February 20, 2013. By then he weighed just 108 pounds and felt weak and exhausted. He spent a couple of weeks in bed, then talked himself into getting up and doing one pushup, and then another one. He began to take short walks, which gradually turned into longer ones. He set a goal of eating 12,000 calories a day to gain weight. Before long, he returned to work at Google.
But as he continued to get follow-up scans and other tests, worry consumed him. These tests were at first once a week, then monthly, then quarterly, then yearly. “Life after chemo is about scans and a huge amount of anxiety,” said Desai. “You fully believe the cancer is going to come back and kill you.” He coped by distracting himself with work, deliberately starting projects with new work teams who didn’t know his health history, so he wouldn’t have to talk about it.
In February 2019, Desai was medically discharged. He no longer gets regular scans to check for cancer. But he says he’s not the same person he was before his diagnosis.
“The old me doesn’t exist anymore. I made a promise to deepen my relationships with my friends and focus on them in the bonus time I was given. But the other side of that coin was shutting myself off from others, especially new people. I felt like I didn’t want to start any type of relationship, especially with anyone significant, so I could not disappoint them in case I ended up dying. I didn’t want to let anyone down.”
Desai’s doctors say he’s going to be OK, but he says that’s hard to grasp, at least for now. “I feel good, but I can’t believe yet that I’m better, so I just have to believe other people while I’m learning to return to normal as a person. It’s going to take a while to process,” said Desai. “Looking back, I wish I could have owned my struggle more graciously, more genuinely. If I didn’t do it then, maybe I can do it now.”
Testicular Cancer Resources
If you or a loved one has recently been diagnosed with testicular cancer, we encourage you to advocate for yourself. SURVIVEiT’S Testicular Cancer Resource Library has a number of tools and sources you can use to face cancer on your own terms. See all testicular cancer resources today.