When Sumbul Ari was diagnosed with a rare cancer at 26, one of her first thoughts was “thank god”.
It wasn’t because she was happy to have cancer, but because she finally had answers after seeing nearly a dozen specialists while suffering symptoms that made her life hell for 11 months.
“I felt so relieved,” Sumbul told Yahoo Lifestyle. “I told the doctor I don’t care what cancer I have, just get me a night’s sleep. Just give me one day without scratching myself.”
The 26-year-old from Cairns said the first indication something was wrong was a constant, full-body itch, which began in early April last year.
“There was no rash, no redness. It felt like things were crawling under my skin. No matter how hard or how much I scratched myself, it would not go away,” she said.
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“This would persist throughout the day, and then at night it would get even worse. I would use the sharpest object I could find to scratch my body, and my feet were the worst part.
“It felt like they were on fire.
“I just knew deep down, this wasn’t a skin issue. It was more than that. This isn’t a topical issue. I knew it was coming from inside.”
The young Queenslander was eventually told she had Hodgkin lymphoma, a rare disease sparked by cancerous tumours forming inside the body’s lymph nodes, according to the Leukaemia Foundation.
In Australia, around 600 people are diagnosed with it every year.
Sumbul doesn’t have any family history of cancer, and the cause for her Hodgkin’s lymphoma remains unknown.
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Aussie’s desperate search for a doctor who could find the problem
At first, Sumbul thought the itching might be the result of an allergic reaction or caused by a beauty, shower or cleaning product.
“I did a process of elimination, and then when I gave up on that I went to see a doctor. I was hoping I would wake up and it would be gone,” she said.
“I had a skin infection but also mentioned the itching and how I had experienced this before. He just told me to moisturise my skin and said that because we live in a hot climate, it was probably my skin reacting to the weather.”
Sumbul said the itching she was experiencing every day and night was unbearable. Source: Supplied/Sumbul Ari
A month later, Sumbul went to see a female doctor after being “basically dismissed” by the first and because she had developed another skin issue.
“At that point, I was having really bad night sweats. I would wake up in the middle of the night, so hot and drenched in sweat,” she said.
“On top of that, there were nights where I would wake up with blood on my sheets because I had been itching so hard.”
She was treated for scabies, a skin condition caused by a tiny mite, but two days later the itching only got worse. The doctor told her “it’s just one of those things” and she was encouraged to see a skin specialist.
Over the next few months, she saw more specialists, GPs, naturopaths and a colonic doctor.
The 26-year-old did a parasite cleanse and colonoscopy, was told it was athlete’s foot and fungal infections, and was encouraged to ingest Chinese medicine, iron tablets, antibiotics, and even eczema medication.
This all happened while she was dealing with the unshakable itching every single day.
“I tried so many things on my own because the itching was consuming me,” she told Yahoo Lifestyle.
“Every single doctor saw, I bawled my eyes out. I couldn’t even talk.”
In addition to the itching, she was also suffering from night sweats, fatigue, anaemia, voice changes, brain fog, and recurring infections.
The lump that changed everything
It wasn’t until March this year where she felt a pea-sized lump on the side of her neck that raised alarm bells.
She had felt it two years earlier but didn’t think much of it as she was fit and active.
But she Googled ‘lump on neck’ and, lo and behold, one of the symptoms was itchy skin.
Sambul booked a doctor’s appointment for the following day and went in all guns blazing.
“I wrote a list of everything I have been tested for, I looked her dead in the eyes and said, ‘Listen to me. For the past 11 months, this is everything that I’ve been treated for,’” she recalled.
“I really, really want an ultrasound for my neck.”
The ultrasound was booked for the following morning and Sumbul’s case was marked as urgent. The nurse pushed for the results to come through by the end of the day rather than the normal 10-day wait.
The 26-year-old said it wasn’t until she noticed a lump on her neck that she was able to find answers. Source: Supplied/Sumbul Ari
By 5:45pm, the doctor had her results and admitted her to the emergency department for “further investigation”.
She went through a CT scan, PET scan, heart scan, biopsy and blood panel so that doctors could understand what was happening to her body.
When the results came in, Sumbul’s haematologist told her the cancer had moved to her spleen and she was diagnosed with stage 2-3 Hodgkin’s lymphoma.
A week later she started chemotherapy, and as soon as she had treatment, all the symptoms stopped.
“Every single day I wake up feeling grateful for a full night’s rest, because I’ve genuinely forgotten what it felt like to wake up feeling well-rested,” she told Yahoo Lifestyle.
According to Lymphoma Action, the scientists believe the itchiness is caused by proteins called cytokines, which are released by the body’s immune system when it’s fighting an infection or illness.
Sumbul hopes sharing her story will help others who might experience the same symptoms.
“My number one message is don’t stop advocating for yourself. If you know there is something wrong, keep pushing,” she said.
“Doctors shouldn’t assume that just because you look fit and healthy, that you’re fine. I had all these other symptoms. Why are we ignoring that?
“Every single person that messaged me for help has said their doctors are not listening.”
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