Teenagers and young adults with cancer are the hardest to treat

LEBANI MAZHANI reflects on the complexities of her own and others’ journeys fighting Cancer as a teenager or young adult.

I was 23 years old when I was diagnosed with Cancer, an ‘adult’ by legal definition. I vividly remember one day asking my parents to leave a consultation room, and allow me privacy with my doctor. It was my right after all, nothing could be done to me without my consent. Never mind the fact that I had no penny to my name and was under my parents’ medical aid scheme, they were not diagnosed with Cancer: I was. This was my monster to deal with, I had to face it. But not on that day; on that day I had a vacation to Mozambique planned. My parents thought I was crazy, to be prepared to go to Mozambique right after I had received my Cancer diagnosis. But for me, there was a different reaction: sure I had been diagnosed with Cancer. I was however still 23 years old and the longest holiday weekend of the year was upon us, I was going to Mozambique. I would deal with Cancer when I returned. I didn’t even understand then what having Cancer really meant.
My doctor had a discussion with me to make sure I was not going to throw myself into the ocean in Maputo, and that I had understood that I had a life threatening disease. Eventually she called my parents back into the room and told them, to their dismay, that she was letting me go on holiday. And that we would pick up the conversation at the end of the long weekend. She later explained to me why she made that decision, saying “you were a child. You just wanted to play. I let you play. You were about to go through debilitating treatment, and so I decided that a weekend away was not going to hurt anybody.”
I was not the only one who wanted to play. Calvin Tlhose was 16 years old and an upcoming basketball star when he was diagnosed with Osteosarcoma, a Cancer of the bone. He was then told that he would have to lose his leg to live, putting an abrupt end to his professional basketball aspirations. He was under 18 years old though, and the decision to amputate was not his, but his mother’s. And if his mother had refused, the Courts would have intervened. The law is very clear that the best interests of the child are protected by the High Court, and it would have been very easy for doctors to get authority to surgically remove Calvin’s leg. Now, imagine being a teenager, dealing with puberty and defining your life. And then having to grow up very quickly and deal with a life-long change that you never saw coming.
Calvin said, “As a teenager, what came to my mind first was my dream life. Will I ever run up and down like my peers, get married or get the job I want?” He adds, “Bear in mind, a lot of teenagers do not know what life really is, they have never experienced it.” Calvin has remarkably managed to spring back up from his amputation, and plays wheelchair basketball. He is also well on his way to his dream job, currently studying for a Bachelor of Science at the University of Botswana.
Calvin is somewhat fortunate, however, that the responsibility of making the decision to amputate was not his, but of his parents. The most difficult group to deal with is the young adults. Those who are apparently old enough to consent to treatment but are often neither responsible nor insightful enough to make the right decisions.
Mpho Mogomotsi was 23 years old when he was diagnosed with a bone Cancer. He was sent to South Africa alone, for surgery. He discovered when reading the consent form that he was going to lose his leg, and refused to sign it. I am ghastly disappointed by the system every time I remember his case: the fact that a young adult was sent to a foreign country to agree to a life threatening and life altering surgery on his own is appalling. On paper, there was nothing wrong (expect for him not having received clear counselling, which is a story for another day). Since he was over 18, the government of Botswana was under no obligation to bear the costs of accommodating his parents to accompany their son to Johannesburg for the surgery.
This is where, in my opinion, the paper needs to change. It cannot be explained nor justified, that a 23 year old can be responsible for his whole life without support. Mpho died 10 months after that fateful trip to South Africa, where he could have potentially saved his life had he been supported in the way a young man needs to be supported.
I vehemently refused further treatment after my surgery. I was told that I needed to undergo chemotherapy and radiation, and I refused, in very clear terms. At age 23 I was not about to lose my hair and change the pigment of my skin. I was not about to consent to leaving school for at least 2 months to deal with Cancer. My whole life was my law degree and nothing was going to interrupt it, not even Cancer. My parents continued to talk to my doctors and arrange for me to begin my treatment whether I liked it or not. To this day, I owe my life to them and the decisions that they made for me when I was incapable of making them for myself.
It is unfair however, that many others are not afforded the opportunity that I had. There is a need for multi-disciplinary approach to Cancer treatment for teenagers and young adults. Cancer changes your whole life, and there is no way that a person still trying to figure out where they currently are, is capable of dealing with a life threatening diagnosis such as Cancer, and the lifelong debilitating effects of Cancer treatment. A clinical psychologist has to always be referred to when delivering news of a Cancer diagnosis to anyone who still has their whole life ahead of them.
Dr Sebathu Chiyapo, Radiation Oncologist at Gaborone Private Hospital, explains why teenagers and young adults are the hardest to treat. “The main challenge is that it is a time of self-discovery and trying to fit in, then you have to face a life threatening condition at a very vulnerable time in life,” he says. He further adds that “Most of these young adults and teens are forced to grow up, be responsible and make decisions for themselves.” Dr Chiyapo states that young adults and teenagers are a group which he needs to always treat with extra care, and consider their issues of sexuality, reproduction and self-identity, which are usually dramatically changed by Cancer treatment.
Samantha* was diagnosed with Cancer while studying in a foreign country. She had to consent to chemotherapy which would damage her ovaries and any chance of her bearing babies of her own in future. She had to remove and store her eggs in a bio bank, in order preserve her motherhood probabilities. Now, imagine having to make that decision at 20 years old. Samantha did!
Another example to consider is that of Catherine*, whose Cancer was spreading through her body like wildfire. She was dying, but she was not old enough to be told this. Doctors and her parents continued to treat her like a child, withholding the truth about her condition. But she was not entirely a child, she was 20 years old. And eventually, realising that her pains were not going to get any better nor was she ever going to get the surgery she needed, she asked me, “Lebani, am I going to die?” Those words, which should have been asked to a psychologist, still haunt me when I remember the beautiful Catherine who died a few weeks before her 21st birthday.
*name changed