She was relieved when the doctor broke the news to her. Being diagnosed with breast cancer would be a devastating blow for most women, especially when faced with the reality of losing both breasts. Yet when Camilla Neelse was told her cancer was so advanced, she’d need a double mastectomy, she whispered “hallelujah”.
The mom of one suffers from gigantomachia, a rare condition that causes continued and excessive growth of the breast tissue. Camilla hasn’t been able to find a bra that fits in more than 18 months. The last bra she could wear was a 40JJ, and her breasts are now too large for that too. Her shoulders, back and knees are in constant agony, she says, because of the weight of her breasts. Now she’s looking forward to having them removed.
Camilla (37) isn’t belittling breast cancer. She knows the illness accounts for 16% of cancer deaths among women in South Africa. But having a double mastectomy is her only hope of living a normal life, she says. She was bedridden when DRUM visited her at home in Kimberley in the Northern Cape last year (My breasts won’t stop growing, 8 November 2018).
Being stuck at home and having to rely on her husband, Nazeem Neethling (34), and the couple’s 11-year-old son took a toll on her but when we speak to her on the phone, she sounds like a brand-new woman. “I was in a dark place. You get depressed and you don’t see a way out,” Camilla says. “Now I walk short distances – my husband and son help me. I refuse to use a wheelchair. What if I never get up from it again? “I’ll be getting my life back in early September,” she says. “At last I can look to the future. I can see the light at the end of this thing.” While many women consider their breasts a symbol of their femininity, Camilla’s have made her life a living hell.
Getting breast-reduction surgery isn’t as simple as it sounds. “My medical aid refuses to pay for the operation. I’ve tried everything and argued with them many times, but nothing helps,” she told us last year. Camilla went to a government hospital with her problem but was turned away and told she’s too overweight for an operation.
READ MORE: Raising awareness about breast cancer.
She then pinned her hopes on a Johannesburg-based plastic surgeon who offered to do her breast-reduction surgery free of charge after reading her story. “We went to see her in January, but it cost us R20 000 just to be in Joburg for the week. I couldn’t afford travelling there anymore,” she says. Then, in early August she went for a routine mammogram and was diagnosed with cancer.
Her mammogram reveals she has an invasive ductal carcinoma in her left breast. The tumour is about 1cm in diameter, but it’s situated deep in the breast tissue, she says. Camilla, who used to work as a receptionist, has been declared medically unfit to work and has been home since October last year. Her former employer still pays her and her family’s medical aid contributions, and her medical aid will be paying for her double mastectomy. Her breasts started growing in 2008 when she was pregnant with their son. “My breasts were so big I couldn’t see my tummy,” she recalls. Camilla, who weighs 130kg, says the size of her breasts makes it impossible to exercise.
“Sometimes people will say things like I’m just lazy or I need to get off my fat ass. But it doesn’t bother me as much as it used to.” Gigantomachia isn’t her only issue. She also suffers from osteoporosis, sleep apnoea and fibromyalgia, an extremely painful condition. She also has type 2 diabetes and endometriosis – but it’s her breasts that keep her awake at night. “I don’t sleep, I can’t,” she says. She’s incredibly grateful to her husband. They’ve been married for five years and Nazeem had to quit his job as a petrol station manager to take care of Camilla full time.
Nazeem and their son must wash and dress her. She also needs help to go to the toilet. “At least I can wash my own face. I keep my hair short so I can manage it myself.” Her husband has always been her rock. “When we got the cancer diagnosis, I did worry that he might not want me anymore – he married a woman with large breasts. But he told me he married me for the person I am, not for my breasts.”
She’d like to have reconstruction surgery someday but Nazeem is afraid her breasts will start growing again. “I liked my breasts before they started getting so big. They’re a part of my identity and someday I might want reconstructive surgery, but my husband says no. He doesn’t want to hear it.” She admits it will feel strange to suddenly not have such large breasts anymore, but she knows her quality of life will improve dramatically. “To not have to carry the heavy load . . . Oh Lord, I’m so looking forward to it.”
She’s also looking forward to spending quality time with her son. “Everything’s been about me and that’s not right. I’ve promised him after the operation I’ll play with him and we’ll do things as a family.” Before becoming pregnant, Camilla used to dance and teach dancing. “I want to teach dance classes again. They’ve asked me to teach jazz dance at the community centre. As soon as I’m able, I want to.”
Last year, Camilla founded Gigantomachia South Africa, an organisation to raise awareness about the condition. She says she hopes to become a motivational speaker after her mastectomy. But first she will have to undergo physiotherapy “because my back had to work so hard due to my heavy breasts”.
She’s quiet for a moment. “For the first time I have real hope. My psychologist and Nazeem were worried about how I’d take the [cancer] diagnosis but I can’t stop smiling. One of these days I’ll be my old self again,” she says. “Then it’s my turn to do everything for Nazeem. I want to spoil him because I couldn’t have asked for a better husband. “I’m so grateful.”