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She was diagnosed with uterine cancer several months ago — now 11-year-old Nita-Jané van der Berg has undergone a hysterectomy as part of her life-saving treatment.
The past few months have been tough, and now weeks of intense chemotherapy lie ahead. But this girl from the Northern Cape remains determined to beat the big C.
“The first thing she said after the hysterectomy was, ‘Now I can finally wear white pants’,” her mom Suné says.
One of the symptoms of the cancer was bleeding and she'd been unable to wear white pants because she was worried about stains.
The hysterectomy lasted just under three hours and although she woke up in a great deal of pain, she was grateful to be alive.
The day after her major surgery, Nita-Jané managed to move around and take a shower.
“This is a strong little girl,” her mom says.
In November, just days before her hysterectomy, Nita-Jané also underwent egg retrieval surgery, in case she wants to have children of her own one day. Altogether 33 eggs were retrieved from her ovaries, 29 of which had matured.
She received hormone injections prior to the egg-retrieval and once her eggs were harvested she was ready for the hysterectomy, which offered her the best chance of beating the cancer.
“I was a little scared,” she admits.
Luckily she's been able to rely on her family for support.
Now she's steeling herself for the last part of her cancer battle – undergoing three more sessions of chemotherapy.
Doctors told her she'd need 20 sessions and she's already had seven at Lenmed Royal Hospital and Heart Centre in Kimberley as well as at Universitas Private Hospital in Bloemfontein.
Nita-Jané usually has to be admitted to hospital because the chemo is so hard on her body.
She's been hospitalised twice due to nosebleeds and has received three units of blood and two platelet transfusions.
“The last few weeks have been hectic. She even missed two chemo sessions because she wasn’t well enough to receive the chemo,” her mom says.
After her second chemo session, her hair began to fall out in clumps and she bravely decided to chop it all off. She’s since embraced her bald head and her family has also bought wigs which she wears to school.
“Sometimes chemo just leaves me very tired. But in those moments I just think of the good,” the shy girl says.
The good is Lilo, the chihuahua her family gave her as a gift in January.
“She’s the best medicine for everyone,” Suné says.
The story below was first published in the 23 November 2023 issue of YOU.
When she looked at her youngest child she wanted to cry. How do you explain to an 11-year-old girl she has a dangerous form of cancer – and the only way to stop it from killing her is to have a major internal organ removed?
Suné Herselman didn’t know where she was going to find the words because she couldn’t understand it herself. Just a little while ago her pre-teen had been playing with dolls – now she was having to deal with a disease that usually strikes women in their fifties or sixties.
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Nita-Jané had uterine cancer and not only did she have to get her head around the fact she had a life-threatening disease, she also needed a hysterectomy to stop the cancer from spreading.
Her family were shattered – and her doctors at Lenmed Royal Hospital and Heart Centre were in uncharted waters.
“It’s the first time in my career that I’ve seen an 11-year-old with uterine cancer,” Dr JP Spangenberg says.
He’s the gynaecologist who recently made the diagnosis and is now part of a multidisciplinary team working to treat the little girl.
In addition to surgeons and oncologists, fertility specialists are also on board to ensure that if Nita-Jané wants biological children one day, she might be able to have them.
At this point she’s too young to make this decision so her parents are trying to keep her options open by harvesting eggs from her ovaries before she undergoes the surgery to remove her womb.
The eggs will be frozen and if their daughter wants children at a later stage she’ll need to enlist the help of a surrogate to carry her baby.
“Because she’s so young we don’t know if it [the egg-harvesting procedure] will be successful but that’s now step one,” Suné (39) says.
A long road lies ahead so all she and ex-husband Jaco van der Berg (50) can do is take things one step at a time.
Nita-Jané recently started receiving hormone injections to kickstart the egg-retrieval process. Once her eggs are harvested, she’ll have the hysterectomy which will offer her the best chance of beating the cancer.
After that, she’ll need four to six months of chemotherapy.
Suné admits there are days she finds it all overwhelming and wonders how she’s going to find strength to support her daughter.
“There are so many things that are going to happen and that are ongoing. There’s actually nothing you can do to make it better. You can only hold her hand and make sure she’s comfortable.”
In April Nita-Jané noticed spots of blood in her underwear. Six months before, she’d experienced her first period and dealt with the normal symptoms that come with menstruation – cramps, tiredness and bloating.
At first the family didn’t think the spotting was anything unusual but they became concerned when it started affecting the Grade 5 pupil’s quality of life.
“I felt tired and I had pain in my stomach,” Nita-Jané recalls.
Two months later the bleeding became heavier and was happening more often. It was so bad that during the day she’d use up to six extra-thick night pads.
Some days Suné, who works as an admin clerk, would get a call from the school to collect her daughter within hours of dropping her off because the bleeding was so bad she couldn’t focus on her lessons.
Her mom took her to their family doctor who gave her medication to stop the bleeding. “It would stop for five days, then start again,” Suné recalls.
By July the bleeding was so heavy Suné decided to make an appointment with a gynaecologist but all the gynaes in town were fully booked and they had to wait until September for an appointment.
The news was troubling.
“The doctor said it looked like she had a polyp,” Suné says.
They were told that although it’s extremely rare for a child to develop this type of growth, which generally appears in the lining of the uterus, polyps usually aren’t cancerous.
Nita-Jané underwent a polypectomy to remove it – and that’s when doctors discovered it wasn’t in fact a polyp but instead something much more worrying.
“Ninety percent of the growth was removed and sent to a pathologist,” Suné says.
Nita-Jané was diagnosed with uterine sarcoma, a rare and aggressive cancer that forms in the muscles and tissues of the womb.
“It was shocking. I didn’t expect to hear cancer. I knew something was wrong, but not cancer,” Suné says.
This wasn’t the only bad news Suné had to deal with: her mother, Joanie (60), was diagnosed with cancer on the same day.
“We had a double shock,” says Suné, who doesn’t wish to disclose the type of cancer her mom has.
Suné and Jaco, who runs his own security company, didn’t know how to tell their little girl about her diagnosis.
“We decided we’d let the doctor break the news to her so that if she had any questions he would be able to answer her,” Suné explains.
Jaco, Suné and their 14-year-old son, JJ, were all present when Nita-Jané received the news.
“I was nervous,” the young girl tells us. “I was really shocked so I couldn’t think of any questions to ask.”
There’s been an outpouring of support for Nita-Jané since the family shared the news. Her mother started a Facebook group where she posts regular updates on her daughter’s treatment and condition.
“Now you actually see how many people really do care and love you,” Suné says.
Earlier this month Nita-Jané was put on a medical aid plan but before then everyone worked hard to raise funds for her medical bills.
“I’m very thankful,” she says, adding that she feels a “little anxious” about her upcoming hysterectomy.
Nita-Jané is trying to process it all by journalling and talking to her friends. Someone who understands what she’s going through is her gran, who has begun her own battle with cancer.
“It helps to talk to her,” Nita-Jané says.
Thankfully the bleeding has stopped but she still suffers from fatigue and takes iron tablets.
“She tries to go to school and stay active,” Suné says. “But if she’s not up to it, I keep her home. I have to keep her strong before the treatment.”
Nita-Jané is confident she will beat cancer and be able to finish school. She then wants to pursue her dream of becoming a hairstylist.
Meanwhile, her mom just wants what any parent desires for their child – a happy childhood.
“I hope she stays this little ray of sunlight,” Suné says.
More about uterine cancer
Uterine sarcoma is a rare type of uterine cancer that forms in the muscle layer of the uterus. It is extremely unusual for a person as young as 11 to develop this cancer – most people with uterine sarcomas are over 40 and the average age of diagnosis is around 60 years old.
Uterine sarcoma grows faster and spreads more quickly than other forms of endometrial cancer but, as with most cancers, the success of treatment depends on how early the cancer is diagnosed.
Symptoms include bleeding, pain in the pelvic area, a frequent need to urinate and a feeling of fullness.
