There's no worse disease than ignorance

As we celebrate World Cancer Day, it is important we draw our attention to a topic that is less talked about but arguably is silently causing many cancer deaths: STIGMA.

Monday, February 06, 2017

As we celebrate World Cancer Day, it is important we draw our attention to a topic that is less talked about but arguably is silently causing many cancer deaths: STIGMA.

The general public still has misconceptions about cancer with a myriad of myths that have made the cancer fight difficult.

Such myths include that cancer is a communicable disease (contagious), an immediate death sentence, that it’s someone’s fault they have cancer, and to extreme degrees that cancer is a curse by God.

Stigma itself is not talked about as it makes people uncomfortable.

This is even worse for some types of cancers that have risk factors, which are considered bad behaviors. Lung cancer, for example, is strongly associated with smoking. Victims of lung cancer get a lot of blame solely because of their social activities.

A famous New York Times columnist David Carr died in 2015 and people took to social media and quickly blamed David for his own death. The insensitivity of the media neglected to mention that even non-smokers could get lung cancer.

This only amplified misconceptions and isolated those who are battling the same disease, especially those who were non-smokers.

Healthcare professionals, especially those treating cancer, meet many cancer patients who face this kind of stigma on a daily basis not only created by the general public but also by those who should otherwise give them comfort - their friends, families and the communities they live in.

I have experienced this myself and, sadly, I can’t recall how many women I treated who were left by their husbands after they were diagnosed with cancer especially breast or cervical cancers.

Here, I will share a few of the stories of patients, while stigmatised, fought back to fight their disease and rise above their isolation.

Jeanine (not real name) is one of them. She is in her early 30s, a farmer and one day when she was showering after her daily fieldwork, she noticed a small lump in her right breast.

She thought that it was nothing to worry about because she was still breast-feeding her 1-year-old son; she thought it was breast milk that probably got stuck. But a year later the lump was still there not yet painful but becoming more prominent.

She then started worrying and bravely decided to share her story with a community health worker (CHW). The CHW knew nothing about it but advised her to seek medical advice. After 6 months of back and forth referrals, she found herself at the Butaro Cancer Centre of Excellence.

She was diagnosed with an advanced stage breast cancer and was immediately started on treatment (chemotherapy).

Cancer diagnosis itself is unpleasant but it gets worse when left alone and stigmatised.

When her hair started falling off, her nails darkened and she had daily vomiting, due to her treatment, relatives started avoiding her. They started isolating her, not using the same plates or cups and some relatives never got close enough to even greet her.

This isolation led to depression, which caused her to miss scheduled treatment. Through the Partners In Health programme of accompaniment she was followed up with and brought back to hospital and it was only at this time that we learned all of these details.

She was put back on treatment and the tumor continued shrinking. Breast cancer treatment involves removing the affected breast surgically, which we call mastectomy.

The time for mastectomy came and it was a real fight to convince Jeanine and her husband to go for it. She later revealed to me that her husband told her that if she went for mastectomy he would leave her.

Jeanine bravely chose her life instead of an unsupportive husband and indeed she had the surgery and her husband left her.

Jeanine is now 2 years cancer free. Had she chose to obey her husband wishes, I would not be sharing this story.

Anne (not real name) was diagnosed with Hodgkin’s lymphoma, a cancer that affects lymph nodes. During a follow up appointment after her treatment, she narrated to me how she was forced to end several relationships because of cancer. Hodgkin’s is treatable and Anne is a survivor of the disease.

However, despite the counseling and attempts to demystify the fact that she can give, birth her ex lovers were not convinced and did not see her fit for childbirth.

Anne, while cancer free, has become more isolated and has now decided to forego relationships and remain alone - all due to a disease she no longer has.

Jeanine and Anne’s stories are not unique. Many males and females are still out there full of fear with tumors and disease that have been with them for a long time.

Both those who have been treated and those too scared to seek care fear to be stigmatised by society and their families. For those treated, their dreams and hope are shattered despite being cured of their diseases.

And those who do not seek care become depressed or die in pain attributing their suffering to witchcraft. Yet their lives would have been saved as Jeanine and Anne’s.

It is important to share and understand stories like Jeanine and Anne’s. Survivors too often shy away from coming out to share their stories, due to the experience they went through as patients being stigmatised by their own.

But cancer is not contagious and can affect anyone regardless of gender, social economic status. It’s high time that we save the lives of Jeanine, Anne, and so many others by stopping the stigmatisation that is subjected to patients with different types of cancer.

They are our own; instead let’s give them support, and encourage in their hardest time. Together we can raise awareness of cancer in Rwanda, together we can reduce the death of cancer in Rwanda and together we can beat cancer. 

The writer is an oncologist in training and Founder of Rwanda Children’s Cancer Relief