Man Reveals How He Knew His Benign Mouth Sore Had Turned Cancerous

When Ashwin Sabnekar first went to an oral surgeon to get his tongue checked after he found a strange sore on it, back in 2015, his biopsy concluded that he had a benign tumor, so he thought he had nothing to worry about, but life didn't turn out to be that easy for him.

Four years later, when his wound wouldn't heal, the 50-year-old from South Orange, New Jersey, followed his, and mostly his wife's instinct, and got it checked again, only to make a shocking discovery. His benign tumor was now malignant, and he was diagnosed with head and neck cancer.

While benign tumors are usually nothing to worry about, and it is not very common for them to turn malignant, some specific benign tumors, like colon and skin tumors, can become malignant and cancerous.

Sabnekar, who deep inside always knew something was wrong, has now taken it upon himself to spread awareness and warn potential cancer patients to follow their instincts and chase their health issues, even if that means consulting multiple doctors over and over.

I Had a Strange Sore on My Tongue That Wouldn't Heal

Sabnekar, a global software services consultant, told Newsweek that his problems started in 2014 when he first noticed a wound on his tongue. Still, it wasn't until a year later that, under pressure from his wife, Becky, he finally agreed to get it checked by a professional.

He said: "I started to see white streaks on the side of my tongue. It was just visually bad to look at but nothing that was really bothering as such. Then as time progressed, I started feeling a little bit of pain off and on too.

Finally, in December 2015, Becky convinced him to go to a specialist and get his wound checked out, just for peace of mind, and that was indeed what they got at the time.

A Biopsy Confirmed I Had a Benign Tumor, so I Didn't Worry

"I agreed to go and see an oral surgeon and he did a biopsy. It came out benign, so there was nothing really happening as such to complain a lot about, but it was still there. The wound wouldn't go so I just thought, let's just watch it and see how things progress and if we need to take action, we'll take it but nothing was done essentially," he continued.

"From there I guess, nobody took it seriously. We already got a biopsy and it came negative, so they were like, that's it. Nobody said like, well, you should get a biopsy again, which I think should have been the suggestion. So I think we all had like a false sense of security."

It is not clear whether Sabnekar's biopsy results came out incorrect, or whether his benign tumor turned malignant, but four years later, after more pressure from his wife to pursue this wound and get to the bottom of it, they discovered that it was cancer.

Biopsies are essential in diagnosing cancer, and while they're highly precise, they are not 100 percent accurate every single time. An incorrect biopsy result generally is thought to occur in 1 to 2 percent of surgical pathology cases.

Dr. Mark Urken, an attending surgeon and otolaryngologist at Mount Sinai West in New York City, who performed Sabnekar's extensive surgeries, told Newsweek:

"It is really impossible to give an informed answer to [whether or not it was a misdiagnosis or a case of a benign tumor turning malignant]. It is very unlikely that a squamous cell cancer was missed and was allowed to grow for four years. One would have expected that under those circumstances, a more advanced cancer would have resulted.

"Premalignant lesions, referred to as dysplasia or carcinoma in situ are considered precursor lesions to oral cancers and can evolve over time into full-blown malignancies. By the same token, accurate diagnosis of a lesion may be problematic due to sampling error (not obtaining tissue from a representative portion of the lesion) or lack of expertise by the interpreting pathologist who may not have been aware of the nuances of oral pathology."

Four Years Later a Second Biopsy Confirmed I Had Cancer

"Fast forward to 2019, I started to feel that that bump became now a crater, and it was very bothersome and painful," Sabnekar said, "at first, I had issues when I ate something spicy or drunk something acidic like orange juice or something like that, but then, later on, it became anything. So, again my wife insisted that I went to a different oral surgeon.

"Unfortunately this time we were called into the office, and it's never good news when you're called in. That's when we were told that it was a squamous cell carcinoma, which is a cancer of the tongue. And yeah, that's how the whole journey began with cancer."

Tongue cancer is a very rare type of cancer, and according to the National Cancer Institute, only about 0.4 percent of men and women will be diagnosed with this type of cancer at some point during their lifetime.

Urken on Sabnekar's Extensive Treatment

After being diagnosed with a squamous cell carcinoma of the oral cavity arising in the floor of the mouth and the undersurface of the tongue, Sabnekar had to undergo a series of surgeries to remove the tumor and reconstruct part of his mouth.

"Ashwin underwent a resection of the floor of [the] mouth, a portion of his tongue, and the upper half of his adjacent mandible (lower jaw bone). In addition, the lymph nodes in the left side of his neck were removed, an operation referred to as a Selective Lymph Node Dissection," Urken said.

"Finally, the defect in his mouth following the cancer removal was reconstructed with a radial forearm free flap in which the skin from the lower portion of his arm was transferred to the oral cavity with the artery and vein that supply that tissue (radial artery and cephalic vein). These blood vessels were attached to blood vessels in his neck using microvascular surgery so that the skin would have a new blood supply, allowing it to heal to the surrounding tissues in the oral cavity.

"A skin graft from the thigh was then placed on the forearm donor site. In addition, at the time of surgery, a feeding tube was placed through his nose into his stomach and a temporary tracheostomy was performed to protect his airway," Urken added.

My Recovery Journey Was Hard But My Wife Made It Easier on Me

During his recovery journey, Sabnekar, who had been very healthy his entire life and never expected something like cancer to happen to him, felt very much shaken, describing his experience as "very emotional and tough.

"It was devastating. I had many questions, and there was very little information out there on the internet ... Just looking at those statistics, I did not see anything that would give me some hope, really, other than just talking to my doctor.

"My wife was there for me all through my diagnosis, the surgery recovery. And she was there 24/7 in the room with me. I had days when I felt really low. and whenever I saw across the room, my wife sitting next to a chair, it just gave me the strength and support I needed," he said.

Always Get a Second Opinion

Now Sabnekar is completely cancer-free, and alongside his wife, who was his main caregiver throughout this journey, they are dedicated to spreading awareness about this type of cancer through Made of More, a new educational campaign created in partnership with Head and Neck Cancer Alliance (HNCA), Support for People with Oral and Head and Neck Cancer (SPOHNC), Thyroid, Head And Neck Cancer (THANC) Foundation, CancerCare and Eisai.

Sabnekar considers himself very fortunate not to have had to go through radiation and chemotherapy or radiotherapy and deal with the effects of those too. Because of the location of his tumor, however, he had to go through physical therapy, occupational therapy, and speech therapy, after his surgeries were over.

"Looking back at my own experience, my perspective has changed towards life. I feel that I am stronger now. Now I have a sense of purpose. I want to share my story [with people in similar situations] and let them know that there is hope, that you can get through this. You will be able to get better and live your life again," Sabnekar said.

"I have absolutely nobody to blame here. There needs to be more awareness. When things don't look right, be on the cautious side, follow your instinct, and be more proactive about it. Whether you are a healthcare worker ... whether you are a caregiver, a friend, or a relative, if you notice something that doesn't seem right just chase it.

"Even if you went through a biopsy and it was benign, don't just sit on that thinking that's what it's going to be because it could change, things could change. so just be aware and be proactive about your health."

Update 5/31/23 7:26 a.m. EDT: This article was updated with information about Made of More, a new educational campaign.