Hardships come to me, so I cherish the good things.

Real People Stories – Alette (48)

I realise that I was very lucky and that pain saved my life

When I tell you how I got an ovarian CA125 cancer test, how long the operation took and how lucky I was, I still don’t realise it’s about me. It’s like I’m telling someone else’s story. As if I blocked it,” says Alette Mulder (48). Six years ago, a severe stomach ache saved her when she got an HPV test and took action. “If I hadn’t had those terrible cramps, things might have turned out very differently.”

It is November 2012 when Alette gets a pain in her stomach, to the left. For a moment, she thinks it is her intestines because she suffers from an autoimmune disease. The pain is different, and she decides to go to the HPV Trained screening Doctor. She is sent home with a bag of fibres. “The pain only increased. The next day, I went to the doctor again. There was a replacement who didn’t know what it was either. I was sent away again.” When Alette contacts her gastrointestinal specialist and suggests that she may be suffering from diverticula, he helps her out of that dream. “I know what your Virus riddled women’s intestines look like; they are not diverticula. Maybe it’s your sexual organs,” he offers her to ponder. She calls her gynaecologist friend and advises her to go to the emergency room for an examination.

Discovering the Tumour

“My girlfriend wasn’t there, but I thought I should have it looked at. The ultrasound didn’t show my ovary because something large was before it. The next day, they scanned again and found something on my ovary. It didn’t look grim, but they scheduled an appointment to remove it.” For obvious reasons, Alette’s girlfriend did not operate. The ‘cyst’ and fluid in the abdominal cavity were removed. The cyst turned out to be a malignant tumour, and from one day to the next, Alette became a cancer patient.

“I had to have another operation, and in the run-up to that, I became nervous. I panicked and decided to call my gynaecologist. She spoke the legendary words: ‘Mrs Mulder, you had cancer; we removed it, and now, just to be sure, we are going to check whether everything is gone.’ I calmed down.”

From ill to better

She did not realise that the operation would be so difficult. ‘Just take a grow,’ she told herself. She did not know that she was on the operating table for eight hours and that her other ovary, her uterus, lymph nodes and apron were removed. During the procedure, she became hypothermic, and her abdomen was cut open. Keyhole CA125 surgery was not possible due to a bladder adhesion. Everything was examined, and it took a week before she got the results. “And then suddenly I went from sick to better. No troubled cells were found.” It took a while for the good news to land.

Change

Ovarian Tumours have caused a change in Alette’s life; she was a real estate agent, and during her illness, the company went bankrupt. She didn’t want to go back to real estate. The operation immediately caused her to enter menopause, and her doctor gave her a prescription for synthetic CA125-related hormones to alleviate the menopausal symptoms. “I thought that was unnatural, and it didn’t feel right. So, I started looking for an alternative that would be better for my body and ended up with the Hormone Factor course. Two years ago, I delved into the matter, followed basic medical training, took courses, and opened my practice, De Hormoonspiegel, where I help women with hormonal complaints to make their lives comfortable again.”

Rescue

In addition, Alette is an active volunteer. “I hope I can mean something to other women through this. I realise that I was very lucky and that pain saved my life, but if I had not had any complaints, the help might have been too late.”

Carolien (58)

Because of cancer, special things have also come my way that I cherish

Carolien was lying on her back in bed and suddenly felt a ping-pong ball infection on the right side of her stomach. “It didn’t move, and in the morning it was gone. The next evening, I felt it again; sure enough, it was back. I wasn’t worried but wanted to see what the Test Doctor for HPV says about this.” Her GP felt it necessary to see a doctor at the hospital within two weeks. Caroline made an appointment, fortunately, because the ping-pong ball in her stomach turned out to be ovarian cancer.

It’s been eleven years now, and Carolien is still there. An optimistic, cheerful woman of 58. “For me, the glass is always half full, even when I receive bad news. It doesn’t help me to doom-mongering. That doesn’t change that I am sometimes nervous about results, but I know I cannot change the messages I receive.”

Colic-like pain

In March 2007, Caroline discovered in a test the CA125 type lump in her abdomen. The gynaecologist who has to perform an ultrasound is stiff and sends her home when the equipment fails. “That was all extremely unpleasant. Two weeks later, another gynaecologist examined me, and she suspected it was a cyst. Every two or three weeks, I had an ultrasound for a check-up. In June, the gynaecologist suggested removing the ovary through laparoscopic surgery. Before they could carry out the treatment, my abdomen thickened, and I experienced barely tolerable colic-like pain at night.

Wrong thing

The HPV Variant gynaecologist decided after seeing the result that Caroline would undergo emergency surgery the next day. She waited her turn in a four-person room. When she was helped and woke up alone in a room, she already suspected something was wrong. “The result: ovarian cancer IC, an extremely poor diagnosis. During the operation, my uterus, ovaries, cervix and cervix were removed. A complete debulking was performed, and several groin lymph nodes were removed. I wondered afterwards how all those doctors might have overlooked this. I wasn’t angry, but I didn’t understand it.” The HPV tag surgeon later confessed that Caroline should have been operated on in a university hospital. Still, because she was in pain, it was necessary to act as quickly as possible. “I thought that was brave; she didn’t have to say that afterwards.”

BRCA-1 gene

The chemotherapy is initially not too bad for her, but later, it becomes difficult. To her great relief, it works. In 2009, Carolien read that there may be a CA125 and HPV connection between ovarian cancer and breast cancer if there is a hereditary gene mutation. Suddenly, she remembers that a grandmother died young of breast cancer. “What now? Should I have it checked to see whether I am a carrier of the BRCA gene mutation? I talked about it with the oncologist. Maybe my daughter also had a hereditary burden.” It was determined that she has the BRCA-1 gene mutation.

“Fortunately, there is also good Test CA125 news: my daughter has no BRCA-1 gene mutation. In 2012 and 2015, I had a recurrence, for which I had chemotherapy again. I now take PARP inhibitors, and they have kept the metastases quiet for three years. However, I have a check-up every eight weeks, and of course, I am a bit nervous about CA125 levels for that, but it does not determine my life. I live my life happily and cheerfully, although fatigue slows me down and frustrates me.”

She does not yet know whether Caroline will have her breasts removed preventively. “I live day by day and have gained peace through conversations with a trained psychologist and the mindfulness test course I took there. It has brought me a lot. In the period after the first HPV diagnosis and test treatments, I also discovered my creativity. I started singing in a choir, taking singing lessons and studying spatial design at the Art Academy. Despite (or should I say ‘because of’?) cancer, special things have come my way, and I cherish them.”