Waheed Vadi, who is on his way to becoming a chartered accountant, first noticed a small lump on his perineum (the area between the testicles and the anus) in 2012. He initially ignored it, but eventually paid a visit to his GP to have it checked out. “My GP said it didn’t look like anything serious. He said it was just a cyst under my skin and he would take it out the next morning under local anaesthetic,” recalls Waheed.
The next day the lump was removed and the doctor confirmed it was a benign lipoma without sending it to a laboratory for testing. Greatly relieved, Waheed gave it no further thought.
However, a year and a half later, the lump returned. Waheed called his GP, who said it was the same benign lipoma, and that he would simply remove it again. But this time, Waheed was not so easily reassured.
“Alarm bells were going off, so I googled it,” he says. “Google told me that a lipoma would never come back in the same spot. I knew I needed to get specialist help.”
Because of the lump’s location between his reproductive area and anus, Waheed wasn’t sure whether to see a urologist or a colorectal specialist, but he ultimately settled on a urologist. The urologist conducted an ultrasound in his rooms and said that the lump showed all the signs of being a benign cyst, but that would still prefer to put Waheed under a general anaesthetic and take it out. He expressed his annoyance that the GP hadn’t had the lump properly tested the first time.
“It wasn’t a long procedure, and when I was in recovery, the doctor popped his head around the door to tell me that the GP had been right all along – it looked like it was just a lipoma,” says Waheed.
But then, a couple of days later, Waheed received the phone call that made his blood run cold.
“The urologist phoned to say please come in for a chat. I know that a doctor doesn’t ask you to come in, in person if it’s good news, so I asked my mom to drive me there. I wasn’t very functional at that point.”
The doctor broke the news: The lump was a very rare and aggressive type of cancer called a leiomyosarcoma, which develops in the tissues that surround the organs of the body. It was extremely unusual for it to be found in the perineum – and in fact Waheed’s cancer is only the third reported case ever of leiomyosarcoma in that area ever.
Waheed recalls what he went through after he heard the diagnosis: “It’s hard to describe those moments after you’ve been told you have a life-threatening disease. I just remember hugging my mom, and nearly passing out. I couldn’t deal with the news. My old man was out of the country at the time. I was just sobbing and asking my mom to get my dad home.”
The doctor explained that the only way to treat the cancer would be to perform major surgery, to remove the tissue surrounding the site of the lump with a five-centimetre margin in every direction.
“But the perineum isn’t an area where you have a spare five centimetres, so the doctor explained that they would remove as much tissue as they could, and then follow up with radiation treatment. He also said that they would reconstruct my perineum with tissue from my left glute,” says Waheed.
He placed his faith in his surgeons at the Wits Donald Gordon Medical Centre, and luck was finally on his side. With careful surgery, the surgeons managed to remove tissue that was only just short of five centimetres in all directions around the site of the cancerous growth.
Greatly relieved, Waheed went home to recover. This in itself was a difficult time as he could only stand upright or lie on his right side for six weeks.
“The doctors then decided that it was not in my best interests to have radiation because of the damage it could do to the reproductive tissues in the area,” says Waheed. “Instead, they sent me for frequent scans to make sure the cancer wasn’t recurring.”
Today, it’s been almost four and a half years since Waheed’s cancer was first diagnosed, and he is doing better than ever. A passionate athlete, one of the things he found hardest about his recovery was being inactive. Once he was given the all clear to begin training again, he worked hard to get back into shape. He’s a runner and triathlete, and he’s delighted to report that his reconstructed perineum gives him no trouble when he’s on a bike.
His doctor recently recommended moving his scans from every year to 18 months apart, but Waheed thought this was premature. “I said, ‘Wait, woah!’ I thought he was getting a bit too brave. So we’re sticking with yearly scans for now.”
While Waheed has made it through his ordeal in excellent physical shape, it turned out that he needed some psychological support as well.
“I thought I was fine, that I’d dealt with it and was emotionally healed. But then I started to have panic attacks at random times. I just started sweating and hearing a ringing in my ears. I realised I needed to see someone about it, and the therapist explained that I had emotional scars that were worse than the physical ones.”
He was diagnosed with post-traumatic stress disorder, and went into full-time therapy, which helped him to make a full recovery.
Waheed says that it is this emotional part of his cancer journey that made him want to participate in the Movember campaign and reach out to other men. “We find these things very difficult to speak about, and I think that other people need to hear that it’s OK to speak. It’s OK to realise you’ve been through something life altering and that keeping it quiet doesn’t always work so well.”
For others who’ve received a cancer diagnosis, he says that while it takes a huge toll on you and your family, maintaining a positive attitude can make all the difference to your cancer journey.
“People need to know that cancer is a word, not a sentence. People hear that they have cancer and they think they’re done for, but if you catch it early, you have a good chance of survival. I want to make sure that people realise that.”
He’s also passionate about urging men to take responsibility for their own health.
“Men like to think – or pretend – that everything’s OK and nothing is a problem. They don’t want to be hypochondriacs. But I am living proof of why it’s so important not to ignore little problems. For a couple of months after I found that lump in my groin, I thought it was probably nothing. Then my doctor told me it was probably nothing. But deep down I knew that something was wrong, and it was only because I demanded the right help from the right people that I am here today.”
His experience has shaped his message to all men: “Don’t neglect your health and if something’s bothering you, always get it checked out by a doctor who takes you seriously.”
This Movember, pay attention to your health by making yourself aware of the symptoms and tests for the most common male-type cancers with this infographic [link]. Remember, early detection saves lives.