Howard Butler, a 46-year-old head and neck cancer survivor, is a cancer prevention and patient-support advocate. He’s outlived six bouts of cancer and lives to help reduce South Africa’s globally high incidence of Head and Neck or (oropharyngeal) cancers.
He’s outlived 6 tumours: two tumours, one like a small rugby ball in his facial cavities and another 3.5cm large, to the left of his pituitary gland and four recurring incidents involving a parotid tumour, (the parotid glands being where most malignant salivary gland tumours start), and secondary tumours, including on his lung and spine.
The former teacher and mine company training and development facilitator is today an upbeat advocate for positive thinking, patient-empowerment and overcoming seemingly impossible odds. He’s co-founded two Public Benefit Organisations to support cancer survivors. One is called the Face Value Foundation (focussing on head and neck cancer and the other is called Cancer Heroes. International Trading house ICAP from the United Kingdom has pitched in by donating a custom vehicle and trailer for the first mobile Head and Neck Cancer Early Detection unit in Southern Africa, run by Cancer Heroes.
Howard’s gratitude at having been spared is huge. “I saw my mother succumb to bone cancer and her attentive and principal carer - my father - die of a heart attack six months later. My major diagnosis in 2012 was the best and worst thing that’s happened to me. Before that I was getting about five hours sleep a night and working madly. My diagnosis was the wake-up call I needed to slow down,” he says.
“My tumours nearly killed me twice. The tumour in my facial cavities should have killed me, but was handled with laser-sharp, accurate radiation and specific chemotherapy. In 2016, on the occasion of the last of my cancer diagnosis, a tumour next to my pituitary gland led to temporary blindness in one eye. A social worker sat my wife, Bernice down, telling her it would probably kill me. Bernice cried for two hours solid,” he recalls.
Bleeding mole – first warning sign of cancer
Howard’s cancer journey began with the removal of a bleeding mole on his back in his doctor’s rooms in 2010. The biopsy came back malignant, but clinical feedback was that they had removed all malignancy during the surgical procedure. Two years passed. Howard had chronic sinusitis which became so bad that in May and June of 2012 he could only sleep sitting up, perched on a cushion wedge. After a particularly uncomfortable business trip to Botswana, he’d had enough. He went to see his Ear Nose and Throat surgeon – who had, interestingly, himself survived stomach cancer.
“He later told me that as soon as I outlined all the recurring signs, he knew I had cancer – he just had to find out where,” recalls Howard. A CT scan revealed the facial tumour, undetected in previous blood tests. An invasive biopsy of his neck led to a diagnosis of Nasopharyngeal Carcinoma. A tumour had wedged itself between his nasal cavities, brain and spinal cord, extending from his nose across his left cheek bone and down his neck. It was inoperable. A full 37 sessions of chemotherapy began, using one of the most potent chemo drugs on the market. Howard’s weight dropped from 116kg to 72kg during the treatment – but the therapy saved his life.
Howard gave up smoking on the day that his teeth were removed ahead of his radiation therapy. He explains: “The radiation to the facial and neck area destroys those parts that keep your teeth, gums and jaw bone healthy. So, your teeth fall out or break and you can begin to develop jaw bone necrosis during treatment if you don’t have the teeth removed before hand. Post-treatment, I have lost my salivary glands but have avoided the jaw bone dying and needing to be removed. My Hollywood-perfect, replacement teeth are good so far. I just need to take in water all day to keep my mouth moist and I also clean my teeth between three and five times a day - and floss with a water jet at least three times a day.”
During treatment, Howard took homeopathic and traditional drug combinations under the guidance of his treating doctor and this helped his kidneys manage the heavy chemotherapy load. He began managing his cholesterol and blood sugar levels to support his heart.
Then in 2014, a routine scan showed that the cancer had metastasized from part of the original site below his brain to the middle of his spine, with a spot on his lung. Another six months of chemotherapy began – after which he again got the all clear.
Finally, in early 2016, some 13 months later, his right eye could suddenly no longer look upward. A tumour had grown next to his pituitary gland, obstructing the optic nerves of the right eye. He agreed to radiation and supportive chemotherapy again, risking blindness in that eye and brain damage to the frontal lobe. “Today 90% of my vision has returned,” Howard adds.
Howard has had 62 sessions of radiation since his initial diagnosis. By January 2017, his cancer was in full remission.
“I love Discovery Health Medical Scheme (DHMS)! They were the one thing I could rely on from the second day I was diagnosed! It made my journey okay to start as I knew someone had my back. Stress-free healing actually works,” says Howard, adding: “Thank you DHMS for rallying around all my needs – you’re all stars!”
Howard’s hormones play up
The most unexpected side-effect of Howard’s treatments was Panhypopituitarism. This results in inadequate or absent production of the anterior pituitary hormones – so the dysfunctional pituitary and faulty thyroid glands, the latter essential for the body’s metabolism, require drugs to balance the hormones. For three months before the Panhypopituitarism diagnosis, Howard suffered wild mood swings. His says it exaggerated his innate short temper. “You know what they say about ginger-kids! I lost all tact,” he jokes.
Howard’s passion: early detection and prevention of all cancers
Howard now lives to help reduce South Africa’s globally high incidence of Head and Neck or oropharyngeal cancers. Howard lives with permanent dental implants as his teeth were removed before the radiation. All hormones are now fed externally since his body no longer produces male hormones due to damage to the pituitary and thyroid glands. He has to daily rinse his nostrils and drink up to six litres of water to compensate for his lack of mucous membranes.
His response when asked about his current side-effects is typically Howard: “If I put my mind to it, I can make them negligible.”
The Discovery Health Medical Scheme is an independent non-profit entity governed by the Medical Schemes Act, and regulated by the Council for Medical Schemes. It is administered by a separate company, Discovery Health (Pty) Ltd, an authorised financial services provider.
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