By Bárbara d'Oro
It was getting close to Christmas season when I got together with Andresa Buzelli and two other friends for dinner at one of their homes. We were all fairly new to Canada and had become really close. I do not remember what we ate, what I was wearing or what we talked about, but I do remember how much Andresa complained about a stomach ache.
At some point during that evening she lay face down on the floor, and said she needed to stay like that because of how much discomfort she was feeling. I remember thinking that she was probably just experiencing gas pain.
The week after our Christmas dinner, Andresa underwent an ultrasound and after the test she came over to my house. She was anxious and told me that during the procedure she was switched from machine to machine a couple of times. She felt something was not right.
We both grew up in the Christian faith, and that afternoon I prayed with her before I left to go to work. I told her to stay at my house and try to get some rest. A few hours later, when I was at work, Andresa called to tell me the hospital had contacted her and told her to return that day.
Suddenly, I was scared that something could be seriously wrong with her, but for Andresa that fear had been preying on her for weeks.
She had been experiencing symptoms since September, when she then went to see her family doctor.
“She [the doctor] thought it was an intolerance to lactose, so I got the medication to intolerance to lactose and it did not get better,” she says. “And then in November she thought it was an irritated intestine, but then I did all the things to eat more vegetables and fruits, but I did not get better.”
Andresa would not get better because her symptoms, which are similar to the discomfort of an upset stomach, are some of the most common for the most lethal cancer for women, ovarian cancer.
Differentiating and recognizing the symptoms is only one of the challenges posed by this disease. The ovaries are located in the belly, where we also have the intestines, the stomach and the colon, and that is why the symptoms of ovarian cancer are similar to symptoms so many people have felt in their bellies before.
“Especially because of our diet of today, it is very common to get constipation, or bloating or sometimes to not feel great after you eat,” says Dr. Marcus Bernardini, who is the head of the gynecologic oncology at Princess Margaret Cancer Centre and has been Andresa’s doctor for the past six years. According to him, diseases such as irritable bowel syndrome, which causes constipation and abdominal pain, have become all too common, and the symptoms are very similar to those of ovarian cancer.
“It is difficult to differentiate what is important, what is not,” says Dr. Bernardini. “I think the message is that if there is any doubt, always check with your doctor, as a good step.”
According to Statistics Canada, ovarian cancer is the fifth most common cancer for female patients. In Canada, the Canadian Cancer Society reports that in 2017, approximately 2,800 women were diagnosed with ovarian cancer, and more than 64 per cent of them died of the disease. Statistics from the same report also show that the survival rate for ovarian cancer patients in the five years following diagnosis in the country is on average 44 per cent.
Ovaries are the primary reproductive organ in women. They are responsible for producing reproductive cells. Each woman has two ovaries and they produce and release eggs. Ovaries also create oestrogen and progesterone, which are the reproductive hormones in women. Ovarian cancer happens when abnormal cells start to multiply inside the ovary, creating a tumour.
Doctor Marcus Bernardini explains that cancer of the ovaries is complex and “probably describes as many as ten different diseases.”
The most common ovarian cancer type is the serous cancer, which usually tends to appear in postmenopausal women. The serous cancer causes symptoms such as bloating and changes of appetite; in about 60 per cent of the cases, when this cancer is diagnosed, the patient will also have tumours on other places of the abdomen as well as the ovary itself.
The serous cancer is a type of cancer in a group called epithelial cancer. The epithelial is a form of tissue – one of four types of tissue in the human body, along with connective tissue, muscle tissue and nerve tissue. Thin epithelial tissues cover the surfaces of organs in the body and lines all cavities. In serous cancer, the cancer starts in the surface layer of epithelial tissue that covers the ovaries.
The two other main groups of cancer are the germ cell tumours, usually diagnosed in teenagers and younger women, and the stromal tumours, which are rarer and also occur in younger women. Germ cell tumours start in the reproductive cells and stromal tumours develop from cells that release hormones and from connective tissue cells, the ovarian stromas. Those tissue cells hold the ovary together.
Of all ovarian cancer patients, about 90 per cent develop some form of epithelial cancer, while the remaining 10 per cent are diagnosed with germ cell or stromal cancers.
Chemotherapy is more effective for germ cells cancer and stromal tumours, since they are usually caught in early stages. The reason they can be caught early is because these types of cancer tend to grow more slowly.
“They can kind of be on the ovary and stay on the ovary for longer,” says Dr. Bernardini. Most people with these two types of cancer will not experience recurrence.
Hard to detect
While going through weeks of feeling constipated, Andresa Buzelli received an awareness email about ovarian cancer forwarded by one of her friends. She then realized she had all the symptoms listed in the email and by then she had also started feeling that there was something in the bottom of her belly. Andresa ran back to the doctor and asked for an ultrasound.
“I remember it was the end of the year and all the doctors in the emergency room said that I could do it later. But I said: ‘No, I want to do it now, please. I want to know now what is going on,’” she says.
Andresa’s visits to doctors had started in October that year and it was only on Dec. 17 that she was diagnosed with an almost 10 centimeter tumour, the size of a mango, in her left ovary.
When Andresa went back to the hospital that afternoon, the doctor told her the tumour seen in the ultrasound appeared to be a teratoma, a germ cell tumor that grows really fast and can be benign or malignant.
“I started reading on Google about tumours and ovary and I got really scared because at that time I was thinking that it was cancer already,” she says.
The doctor had told her not to think about cancer yet. Dr. Bernardini explains that most often, when doctors find something abnormal in the ovary, it is not cancer. And for germ cell tumours, most of them tend to be benign tumours and therefore, not cancer. But Andresa says that at that point, she knew something wrong was growing inside of her.
For the confirmation of a cancer diagnosis Andresa needed surgery, in which the doctor would remove the tumour and only then be able to biopsy it.
In many other types of cancer, tumours are visible; some cancers create lumps in the body allowing doctors to take a tissue sample in order to perform a biopsy. But with the ovaries, the procedure involves other risks and challenges, as Dr. Bernardini explains.
“That [tumour] could be hiding in places surrounded by the intestine and blood vessels and so it is not so easy just to stick needles deep into the belly cavity” in order to take a tissue sample. Doing so, he says, would just “cause trouble.”
According to him, the abnormalities on the ovary also tend to be heterogeneous, making the biopsy even more complex.
That means that each part of the tumour can be different and if you biopsy only one part of it you will not be able to get all the information.
Dr. Bernardini says that most abnormalities on the ovary are cysts, which further complicates the performance of a biopsy. According to him, if you stick a needle into a cyst you might rupture it. If that cyst is a cancer, it might spread in the abdomen.
“We always have a challenge because we cannot look at an ovary in an ultrasound or even in MRI and say: ‘Oh yes, that is for sure a cancer,’” says Dr. Bernardini.
“I remember it was the end of the year and all the doctors in the emergency room said that I could do it later. But I said: ‘No, I want to do it now, please. I want to know now what is going on.’”
Not even a CA 125 blood test, which measures the amount of the protein CA 125, a cancer antigen, can be used to confirm the diagnose for ovarian cancer because other conditions, such as menstruation, can also cause heightened levels of the protein in the body.
The former president of the Society of Gynecologic Oncology of Canada, Dr. Walter Gotlieb, says a lot of effort has been expended on finding ways to detect ovarian cancer, but spotting tumours in the belly, especially when the tumours are very small is still a challenge. He explains that when a tumour gets to one centimeter, when it is not even detectable at all, this tumour is already considered an old tumour, because a one centimeter tumour already contains one billion cancer cells.
“One centimeter is already a very old tumour because it only takes three more cell divisions to become eight centimeters, so if you would want to be able to impact, you would need to impact way earlier, which is at present completely impossible,” he says.
In Andresa’s case, for example, when the 10-centimeter tumour was found, most of its life span happened when the tumour was too small to detect.
Dr. James Bentley, current president of the Society of Gynecologic Oncology of Canada, explains that what makes accurate diagnosis even harder is that ovarian cancer does not have a pre-cancer phase. In other cancers, such as cervical cancer and colon cancer, the disease can be detected 10 years before the cancer starts developing. The Pap test, used as screening for cervical cancer, for example, can detect abnormal cells before they become cancer.
“We have no signal that tells us what we can find to do something about it,” says Dr. Bentley. “The only thing we can do is to use our knowledge about who gets a cancer later on and test family members and look for family history and then screen and prevent cancers in people who have a genetic predisposition.”
In this case, the screening process would be to find out whether or not a woman has a BRCA mutation, which is a breast cancer susceptibility gene.
Promising research based on the odor
In the United States, at a non-profit independent scientific institute in Philadelphia, researchers have found that people with ovarian cancer have a signature odor that can be sniffed by dogs. In the study canines have been trained to smell human plasma, which is a liquid that holds blood cells.
"The dogs tell us that the odor is there in stage one. Now we're looking to see what the odor looks like in terms of its chemicals," says the organic-analytical chemist Dr. George Preti, who is the investigator of the study.
The team of researchers is also working with collaborators that are developing a sensor system that can diagnose the odor. “You will not have a dog in the clinic or in the testing lab that is running hundreds of these samples, so you will need an electronic way of doing that, " says Preti. "And we're also building that system to identify it electronically, using a sensor system based on nanotechnology enabled sensors.”
Dr. Preti explains that the study may give the physician the first indication that there is a problem and people would be coming up with a much earlier diagnosis and therefore benefiting from current treatments.
“The impact can positively impact their outcome at a much earlier stage. I mean that's the ultimate goal that well we're looking for.”
The study received a three-year grant in 2017, but according to Dr. Preti the research will need more time to be completed.
Genetic factor and testing
Andresa Buzelli’s case was, according to doctor Bernardini, uncommon for different reasons. She was 32 years old when the tumour was found in her ovary and most germ cell tumours tend to happen at a much younger age.
The risk of a woman getting ovarian cancer in her lifetime is about 1.5 per cent, but that probability can increase if the person has someone in the family who has had ovarian cancer.
Andresa’s grandmother was diagnosed with ovarian cancer when she was 70 years old. Andresa's mother, Maria Batista Marinho, says that when they found out her mother had cancer, the disease was already in a late stage. Andresa's grandmother experienced symptoms, but did not think it could be anything serious.
“She thought it was just a stomach ache, something old people feel,” says Marinho.
Andresa was a child when her grandmother died. Although she knew her grandmother had died of ovarian cancer, she did not know much about the disease. Doctors say that in the past family members often did not share the cause of death with the family. They would just say that the person died of cancer, but would not acknowledge which kind.
Although Andresa's grandmother had ovarian cancer, according to doctor Bernardini, Andresa's case is not likely related to this fact. Andresa had the germ cell cancer and he says that the epithelial cancer is the only type of ovarian cancer known to have a hereditary factor.
In Ontario, women can get genetic testing to check if they carry an ovarian cancer gene, through the Ministry of Health. According to the Cancer Care Ontario’s website, the screening test is used to show if a woman has genetic mutations that would increase her risks of getting breast, colon or ovarian cancer.
To qualify for the genetic testing through the Ministry of Health, though, a woman has to meet certain parameters and one of them is having a first-degree relative (parent, sibling or child) who was a carrier of BRCA 1 or BRCA 2, genes associated with breast cancer. Research indicates that having either gene increases the odds of a woman developing ovarian cancer. They also need to show proof that their relative was tested for the BRCA gene.
The BRCA 1 gene was identified in the 1990s and the first woman to be tested for it was Annie Parker, a Canadian. Parker lost her mother and her sister to breast cancer, and at the age of 29 she was diagnosed with the same cancer. She survived breast cancer but eight years later was diagnosed with stage three ovarian cancer.
At that time, an American researcher specializing in genetics was examining the link between ovarian and breast cancer. Dr. Mary-Claire King tested Parker for the gene and the test revealed that Parker did indeed carry it. The identification of the BRCA 1 gene was a crucial scientific discovery. The gene increases the risk of ovarian cancer up to 40 per cent.
Being able to prove that a mother or a grandmother died of ovarian cancer has been one of the challenges for women who want to be tested for the genes. The reason for that, according to Dr. Bernardini, is that in previous years, many women who were diagnosed with ovarian cancer or breast cancer were not tested for BRCA genes.
As a way of addressing the problem, a prevention program was developed at Princess Margaret hospital in Toronto, to offer the appropriate genetic testing to anyone in the province who had a mother, sister or daughter who died of ovarian cancer, but was never tested.
“We have been doing that now for about just over two years and have identified people that had mutations that otherwise would not have been identified,” says Dr. Bernardini.
Not every woman who is diagnosed with ovarian cancer has a mutation, though. And not every daughter whose mother has had ovarian cancer will carry a BRCA gene.
“Even if the mother had the gene, does not mean the daughter has the gene. But it is a 50 per cent chance,” says Dr. Bernardini.
According to him, fifteen per cent of people diagnosed with this epithelial cancer would have genetic pre-disposition and that is why it is so important to get people tested.
Since May 2017, the Screen Project, launched by the Woman’s College Hospital in Toronto, is making genetic testing available to anyone who wants to get tested for the BRCA genes, but does not qualify to get it done through the province.
Nicole Gojska, a genetic counsellor at the Woman’s College Hospital, says that in some provinces the wait time for genetic testing can be up to two years. The Screen Project is also an option for those patients who do not want to wait that long.
“Generally speaking, wait times are a big barrier because there are just not enough resources around in order to get people seen faster,” says Gojska.
Through the Screen Project, started by doctors Drs. Steven Narod, Mohammad Akbari, Joanne Kotsopoulos and Kelly Metcalfe, anyone who is over 18 years old can get tested. The project is part of a study done by the researchers of the Woman’s College Hospital in which they are evaluating the benefits of having the population tested.
“Whether you meet the criteria in your province or not, whether you are experiencing any other barrier or if you are just someone who is curious about it, it is open to you and it is all done online,” says Nicole Gojska.
People who would like to get tested through the project have access to videos and other educational material online. They fill out a questionnaire in the website and pay $165 (US), since the test is done in a lab in the US. To get the genetic testing done in Canada usually costs three times more in private labs.
Once people sign up online, a saliva kit is mailed to their homes. They have to spit in a little tube and send it back to the Woman’s College Hospital. Results are usually ready in four weeks and the hospital offers counseling for those who test positive for the BRCA mutations. Gojska says that the hospital also helps people to facilitate a referral to their local area.
“We connect them with their local genetics clinic who then can help them manage whether it will be surgery, screening or anything else that needs to kind of be set up for them.”
Surgery means that some women will choose to have their ovaries and fallopian tubes removed to eliminate the chance of getting ovarian cancer. Or they can be referred to a high-risk screening program in which they are scheduled for a mammogram and a MRI every year once they turn 30 years old.
The results collected in the project will also help ovarian cancer research. Over a thousand people have been tested through the Screen Project so far and Gojska says they have found BRCA 1 or BRCA 2 carriers who would have been missed because they do not meet the provincial criteria for testing.
“So, there is also another aspect of the project, just to maybe think about how can we improve the criteria.”
Gojska explains that there are certain ethnic groups that have a higher prevalence of BRCA mutations. One of the most well-known is the Ashkenazi Jewish population.
“In the average population, it is thought to be one in every 200 to 300 people that have a BRCA mutation. If someone is of Ashkenazi Jewish descent, that can be anywhere from one in 50 to one in 100.”
The reason why is because the Ashkenazi Jewish is an example of a founder population, which is when a group, part of a larger population, start a new population somewhere else. In consequence to this , a loss of genetic variation will happen.
In 2015 a study published in the journal Nature Genetics showed that some French-Canadian and Polish founder population also have a higher prevalence of having the BRCA mutation.
The beginning of Andresa's treatment
When Andresa was diagnosed with the tumour, she was in the second year of her doctoral studies in rehabilitation science at the University of Toronto. She had moved from Brazil to study in Canada, but when she faced her diagnosis, she decided she wanted to get treated close to her family.
“I started contacting my friends who were doctors in Brazil to know if they knew someone and how could I get a surgery there,” she says.
Andresa had a friend at one of the most prestigious medical schools in Brazil, who was a medical student, and her friend talked to one of the surgeons about Andresa’s case. The surgeon then said that he could operate on Andresa early in January, almost four weeks after her diagnosis.
At that time, Andresa was single and dreamed of having a family someday, but she says that suddenly all she could think of was how uncertain her future was.
“When I got to Brazil the first thing that I did was crying on my mom's lap. I hugged her and I said: ‘Mom I may have cancer, I may die. I am so scared.’ And that was the burst of realizing that something serious was happening.”
Andresa says that she remembers in detail her last appointments before the surgery. At one point, her doctor, who was young woman, excused herself and said she needed to leave the room for a moment. Andresa tells that she felt the human side of her doctor.
“I just felt that she left the room to cry because after all the signals of the disease, and she saw the images, I think she thought that things would be really serious.”
Back in the room, the doctor said it was possible that she would have to remove both of Andresa’s ovaries, her uterus and part of her intestines. Her latest tests were showing a possible spread of the cancer. There were lots of liquids in her abdomen and the doctor told her that what she was seeing could mean that Andresa had a peritoneal carcinomatosis, which is when the cancer spreads in the abdomen.
Andresa told the doctor she wanted to proceed with the surgery as soon as possible and because she was not in a relationship she decided not to have her eggs preserved.
“The doctor asked me: ‘Do you have children? Do you want to have children?’ I had to think fast and the only thing I said was: ‘Since I am not married and I do not know if I will ever be, get this tumour out of me,’” says Andresa.
Andresa remembers that she left the room with her mother and they were both silent. There were no words spoken even during the walk back to their house.
“The possibility of a peritoneal carcinomatosis was there in my CT scan results,” she says. “Then I thought I would live one or two more years, that is all.”
The spread of an ovary tumour is likely to happen because of where the ovary is located, which is in the peritoneal cavity of the body. In the cavity, we also have the intestines, the liver and the stomach.
Once Andresa got home with her mother that afternoon they started to pray.
“We bow down our knees on the floor and we just cried before the Lord. We just asked: ‘God have mercy’. My mom asked: ‘God have mercy of my daughter. Heal her,’” says Andresa.
When Andresa went for her surgery on Jan. 11, less than a month after her diagnosis, her tumour was already 17 centimeters, seven centimeters bigger than how it presented in her first ultrasound in Canada.
Andresa says that sometimes she still thinks about what would have happened if she had waited in Canada to get her ultrasound done only after the holidays.
“I do think that the Canadian health system is slow for serious diseases,” she says. “Things move slow when you need a faster treatment. Very slow. So, I think the system needs to change in that direction.”
In Canada, there are guidelines that define timelines of when doctors have to get people into the operating room. According to Dr. Bernardini, the Cancer Care Ontario guideline says that cancer patients requiring surgery should be in the operating room within four weeks.
“Rarely there is some extreme circumstances when maybe it should be two weeks to get them in the operating room,” he says.
He explains that long periods, as in years, would make a difference, but there is no research that shows that waiting more weeks would worsen complications.
“If you wait three years for example, and you do not do something, with almost 100 per cent certainty you will have a problem,” he says. “But whether or not you are waiting two weeks or four weeks or six weeks does that make a difference?”
He says that tumours are so “multifactorial” that, if they are localized to one area, at some point something might happen so that the tumour becomes no longer local and the cancer spreads, but there is no way of knowing exactly when that change could happen.
On the other hand, getting diagnosed and treated in a short period does have an emotional effect on patients. Cailey Crawford is the Ontario regional director of Ovarian Cancer Canada, a non-profit charity and the only organization in the country that focuses exclusively on the disease. Crawford says that she gets phone calls from women all the time once they suspect they might have ovarian cancer and the stress they can go through is devastating.
“You may even have a good idea that you have it [ovarian cancer], but you do not know, is it stage one? Or stage four?” says Crawford. “That is a big difference in terms of outcome, so just the waiting and I often find that the most scared and stressed women are, is not when they get the diagnosis, it is before they get it,” she says.
The tumour removal
Three nights before Andresa Buzelli’s surgery, on the day she heard the bad news from the doctor and started to pray, she woke up in the middle of the night feeling something she describes as "a warm touch" on the left side of her belly. The next morning, she woke up with no pain, but she could still feel the tumour.
“That day I felt the kind of peace that no doctor and nothing else in the world could give me. I knew God was with me,” says Andresa.
Andresa’s mother says that the first thing she noticed in the morning was that her daughter’s belly was not bloated.
“She was wearing her pajamas and as she walked towards me I saw that her belly was not swollen anymore.”
Andresa’s surgery happened 11 days before her surgery would have been scheduled if she had stayed in Canada. During the surgery, what the doctor saw was apparently very different from what the previous ultrasounds had shown.
“They did not see the liquid, they did not see the tumor spread, they just saw the tumor like a big mango,” says Andresa. The doctor told Andresa that this could only be a miracle.
For Andresa and her mother, the positive result of the surgery was an answer to their prayers. Andresa’s mother says that another doctor who watched the surgery told her the surgeon was shocked and even moved several organs of Andresa during the surgery just to make sure there was no cancer hidden in her daughter’s abdomen.
“The doctor told me something must have happened because what she had seen in the ultrasound was not there anymore,” says Marinho.
The doctor removed Andresa’s left ovary and left fallopian tube. Andresa had three benign tumours in her right ovary, but because she was a young woman in her early 30s, the doctor excised the tumors but left her right ovary intact.
The removal of the ovaries and fallopian tubes, which is known as a prophylactic surgery, is recommended in cases when a woman has a BRCA1 or a BRCA 2 gene. The decision for women to go through the surgery will be more challenging if they are young and have not had children yet.
After the surgery women will go into what is called a surgical menopause. Instead of the natural aging process, women have to deal with all the body changes at once. When the ovaries are removed, estrogen production in the female body is significantly reduced.
Although removing the ovaries and fallopian tubes reduces the chances of ovarian cancer, Dr. Bernardini says that doctors do not recommend the prophylactic surgery in every woman once they turn 50, which is usually when most women have already had children.
“You would be doing probably harm in that case, not benefit. So, that benefit of who should have it again is at determining what your risk is.”
“The doctor asked me: ‘Do you have children? Do you want to have children?’ I had to think fast and the only thing I said was: ‘Since I am not married and I do not know if I will ever be, get this tumour out of me,’” says Andresa.
Andresa woke up from the surgery to good news.
“The doctor came to me and said: ‘Andresa your situation was much, much better than we thought, and we saved your right ovary, so get up, get married and have kids,’” she says.
The surgery left her with a 30-centimeter scar because of the exploratory laparotomy, which is when the doctor investigates all the organs. Andresa remembers she had a lot of pain, but at that moment, all she could feel was joy.
“I felt that God was giving me a new chance to live,” she says. “When I saw that my ovary was preserved, even though I thought it was a joke when she [the doctor] said to me to get married, have kids, I thought that now it might be possible.”
Having a successful surgery was not the last stage of Andresa’s journey though. After the tumour was removed, Andresa’s cancer markers, which is a test that indicates the presence of cancer, went back to normal, and the pathology showed a cancer grade two, meaning that there were no cancer cells in any other organs.
Andresa had appointments with more than three oncologists to decide whether or not she would have to go through chemotherapy. Most of them said it would not be necessary, but one of them told her that the pathologist had seen a small trace of cancer cells in her abdomen and she recommended that Andresa undergo preventive chemotherapy to ensure the cancer would not return.
“When she told me that, I remember I was alone in her office and she told me that I should go to chemotherapy and I felt a tremendous peace in my heart,” says Andresa. “I felt so much of God's love at that time.”
Right after the surgery, before starting the chemotherapy, Andresa says that she tried to eat healthier and reduce exposure to cosmetic products in her day-to-day life, such as nail polish. She stopped eating sugar and switched from eating white grains to whole wheat grains.
“I felt that gave me real strength and energy that I had never experienced in life, never. And I think that supported me,” she says.
Three months after the surgery, she started chemotherapy in a hospital in São Paulo. She went through three cycles of treatment. In each cycle, the second week, when a stronger dose of drugs was injected into her blood, was when she had high fevers and had to be sent to the emergency, but then, after the third week, she would have a break and would live a normal life.
“You go outside, you can meet friends, you can socialize, then after 15 days the hair starts falling,” she says.
Andresa used to have long curly hair, but before she started the chemotherapy she decided to cut her hair above the shoulders. After a month of chemo her hair fell out completely. She asked her hairdresser to make a wig from her hair so that she would feel more comfortable going out in public. But it was in the middle of a difficult moment that she felt inspired to look further than her bald head.
“One day I was in front of the mirror and I felt I was beautiful,” she says. “I felt that moment, being in that stage of life and feeling so hopeful, so joyful, so strong and bold.”
Andresa decided to register that moment in a photoshoot. Her mother says she had tried to get Andresa to do a photoshoot many times, as a child and for her sweet fifteen, a traditional celebration in Brazil, but Andresa had never wanted to do that.
“I felt inspired, hopeful. It was a good moment to register that,” says Andresa.
In the photoshoot she also took photos with her younger sister, who was pregnant. For her it was a way of representing the meaning of hope.
The unexpected encounter
While Andresa was under treatment in São Paulo she would attend a prayer group, and in one of the meetings she met Carlos Buzelli. She says that Buzelli approached her to talk, but at that moment she only saw him as a friend.
Before starting the treatment, she had met a guy, but after learning what she was about to go through he broke up with her. Since then, she had not been thinking about having a relationship.
That day, Buzelli asked her what she was doing in the city and she just told him she was there to get medical treatment. Buzelli says that Andresa did not look sick.
“She looked great, especially for a person who was under treatment. She looked happy, beautiful and full of life.”
In the middle of her treatment, Andresa started writing a blog, titled Vivo e Aprendo, - “I live and I learn.” She wanted to share with people her experience since the diagnosis.
“I was surviving cancer and I was learning a lot and I felt like I needed to write about it,” says Andresa.
One of Buzelli’s friends told him about Andresa’s blog and he started reading it. Then they started spending more time together in a Bible study group they both attended every week.
“From the start, since we met, I noticed she had arrived to teach us and not to learn with us,” says Buzelli.
He became a good friend and would offer to help pick up her parents from the bus station or taking her to the bus station whenever she needed. Andresa’s parents live in a small city in Brazil and she was getting her treatment in another city.
“She looked great, especially for a person who was under treatment. She looked happy, beautiful and full of life.”
The third cycle of chemotherapy weakened Andresa dangerously. She developed a bacterial infection and her doctors suspected she had septicemia, an infection in the blood. She was then taken to the ICU. She was conscious but was facing the risk of a general infection.
Even when going through each challenge, Andresa says her faith was what kept her strong – a faith that she admits she is unable to explain.
“I was conscious all the time, I was aware of everything that was happening and again I was very peaceful, I was very calm,” she says. “I trusted God was there with me again, so I went to the ICU and I was not afraid.”
Andresa’s mother says that there were many times she thought she was going to lose her daughter.
“In some moments, I asked God to give her disease to me instead”, says Marinho. “I did not want to lose my daughter.”
Andresa’s mother says that some nights she had to run her daughter to the hospital, so they could administer fluids. “She threw up so much that I thought she was going to get sick because of that.”
Andresa eventually rallied and was released from the hospital after three days in the ICU. She was supposed to go through a fourth cycle of chemo, but after the blood infection her doctor told her she was comfortable stopping her cycle. She asked if Andresa consented.
“I said: ‘Please stop, I will not handle the fourth cycle.’” Andresa says she could feel her body telling her to end the treatment.
Now it was time to resume a normal life. Andresa would still have to go to the hospital for follow-ups, but she was then released from the chemotherapy.
After the treatment Andresa says the changes she experienced in her body were reminders of a new chance to live.
“It is so interesting how our body is capable to rejuvenate, regenerate life again, because after the treatment was done, my hair was growing like crazy,” she says.
Her hair was coming back, her lifestyle had changed. She started taking better care of herself, eating healthier and she got back to her romantic dreams of finding someone.
“I felt that I was still a woman. I was still full of desires and love and feelings, you know?” she says. “I did not feel anymore that I was dying. After the surgery, my hope was just increasing every day.”
“From the start, since we met, I noticed she had arrived to teach us and not to learn with us,” says Buzelli.
Buzelli was still around, always there to help and he was the one who took Andresa to the bus station when she left São Paulo to go to Rio de Janeiro, where she was supposed to get a flight to return to Canada.
“When he dropped me off at the bus station we talked a little bit and I just felt something special for him, because he was about six months taking care of me and my family and helping,” she says.
But since she was leaving, she did not think it was a good idea to initiate a relationship.
Buzelli says he was sad she was leaving, but at the same time happy she was able to get back to her normal life and to her plans.
“But I did think that if she ever came back I would not miss that chance again,” he says.
Time for a new start
Andresa was a permanent resident in Canada and was on a leave of absence from her studies while in Brazil. She had been selected to receive a Vanier Canada Graduate Scholarship from the Canadian Institutes of Health and Research that would allow her to finish her Ph.D.
While she was waiting at the airport though, she realized she was not ready to go back to Canada and be by herself. At least, not yet.
“I went to the check-in line and I could not go further. I just felt: ‘It is not the time for me to go back to Canada, I have to stop right here, I cannot go,’ and I started crying, some could say like a panic attack,” she says.
She did not feel she was physically and emotionally ready to go back.
“I started thinking about being by myself in Canada and I did not know if I would get the support I needed there,” says Andresa.
She cancelled her flight and called her mother to say she had decided to stay in Brazil. Andresa’s supervisor in Toronto arranged for her to start her research in a university in São Paulo, where they had the resources she needed to initiate her pilot study.
Even after thinking Andresa had left, Buzelli was still thinking about her. Andresa tells that his niece used to try to set him up with girls, but after meeting Andresa he had told her to stop. He told Andresa that the day she left he said to his niece to not bother trying to find him a girlfriend anymore because he liked a girl who had gone back to Canada.
Andresa used to have a list of friends she would send updates on her treatment through email and that was how Buzelli found out she had never left Brazil.
“Carlos was in that email list and he responded right away, asking me if I wanted him to pick me up at the bus station in São Paulo,” says Andresa. “Then I kind of knew something was going to happen the next time we saw each other.”
She remembers it was raining and he came to pick her up and was holding an umbrella for her. She says that he was always so caring and he had become a very special friend.
“When he came to pick me up at the bus station, I do not know, our hearts, I think, that time clicked.”
That night they went out for dinner and after a few weeks, they started dating.
“When he dropped me off at the bus station we talked a little bit and I just felt something special for him, because he was about six months taking care of me and my family and helping,” she says.
Seven months later they got married. Andresa says that everyone who attended the wedding left feeling emotional. So much had happened in the past year in her life.
“Things happened so fast, but I was so happy. When I stopped to think I was like: ‘I am getting married’ after having gone through a cancer treatment.”
She and Buzelli moved back to Canada, where they started their life as a couple. Now that she was married, Andresa started dreaming about being a mother. She says that she had gotten her period back a few months after the end of the chemotherapy, but she was not sure if she was back to being fertile. She told Buzelli about the risks of never being able to get pregnant before they got married, but he told her he still wanted to be with her.
The drugs used in chemotherapy can reduce the chances of a woman getting pregnant after the treatment, although Dr. Bernardini says the chemotherapy type Andresa went through typically would not cause infertility.
Almost three years after getting married Andresa found herself pregnant. But in her fifth week of pregnancy she had a miscarriage.
“It was sad, it was very sad and maybe the path would not be that easy, but I decided I would let it go,” says Andresa.
And they did let it go and stopped thinking about it or avoiding a pregnancy and that was how a year and a half later, at the age of 37, Andresa found out she was pregnant again.
She says she had a healthy and normal pregnancy, even after everything her body had been through. In 2013, almost three years after the end of her chemotherapy Andresa had to undergo a major surgery because her intestines had adhesions, which is something that could happen for people who have had surgery in their abdomen. “They can get scar tissue just the way your skin can get scars if you cut it,” Dr. Bernardini explains. He says that for some people, the scar tissue can cause blockages of the intestine and they need to undergo surgery to take down the scar tissue and that is what happened to Andresa.
“I had to go to the hospital four times with very intense and acute pain because the intestines twisted,” she says.
Six years after her diagnosis of cancer Andresa gave birth to a baby girl named Maria Luiza Buzelli. Andresa says that giving birth to her first daughter was something surreal.
“I cannot compare that moment to any other moment of my life.”
After the cancer, Andresa changed her lifestyle and the way she eats. She says she avoids processed food, drinks lots of natural juices and eats lots of vegetables. She believes that a healthy environment and a healthy life can prevent the disease and she takes that into consideration while raising her daughter.
“She [Maria Luiza] does not eat much sugar and we do not have candies and cakes at home, only in birthday parties. The base of her diet is very healthy,” says Andresa.
Dr. Bernardini says that there is no scientific proof any specific diet can reduce the risk of ovarian cancer; however, obesity is linked to other cancers such as cancer of the uterus.
“We know that obesity increases those cancers because it increases the amount of estrogens.”
Why we still know so little about this disease
Andresa went to the doctor for follow-ups every three months in the first year after the end of her cancer treatment, then after the first year she would go every six months. She says that for every appointment she never knew what to expect, even though she was “doing her part,” eating better and living better.
“I had a very aggressive cancer and I know that there is the possibility of recurrence,” says Andresa.
According to the Ovarian Cancer Research Alliance, the largest and oldest organization that funds ovarian cancer research in the world, a recurrence can happen to 70 per cent of patients who have been once diagnosed with ovarian cancer. In stage one, there is a 10 per cent chance of recurrence, while in stages three and four the percentage can go up to 95 per cent.
“There are women who live with recurrences,” says Cailey Crawford, Ontario’s regional director at Ovarian Cancer Canada. “You can live a long time with recurrences.”
In 1998, the non-profit charity Ovarian Cancer Canada was founded to increase awareness about the disease and to give support to women and families in Canada who are dealing with it.
Crawford says that one of the pillars of the organization is to make sure women get the information they need once diagnosed.
“When you go to your appointment with your oncologist often it is very rushed, they do not really go into a lot of detail or it is in language you do not necessarily understand.”
Among the supports Ovarian Cancer Canada offers there is an online discussion board for those affected by the disease – which is a virtual support group.
“They can go on and they talk to each other and ask each other questions,” says Crawford. “Women feel often very isolated with ovarian cancer, they feel like they see a lot about breast cancer, but not a lot about ovarian and they feel they have very unique needs.”
Other types of women’s cancer such as breast cancer and cervical cancer are more common and therefore receive more attention in the media. Research by Ovarian Cancer Canada showed that many Canadians confuse ovarian cancer with cervical cancer. Canadians also erroneously believe a Pap test screens for ovarian cancer and that the disease is highly curable.
Ovarian Cancer Canada works with health care clinicians to provide information in terms patients can readily comprehend. There are two online books, one for patients who are newly diagnosed with the disease and one for patients with recurrence.
The non-profit organization also promotes actions to educate future doctors and nurses about the disease in several universities across the country.
“We will bring women who have been diagnosed to talk about how hard it was for them to get their diagnosis, how the symptoms are very vague, how their doctor did not refer them properly,” says Crawford. “It is really trying to educate people about the disease who are going to be in the health care system as well.”
Ovarian Cancer Canada is also responsible for organizing conferences and promoting an annual Walk of Hope in 37 Canadian cities.
“A lot of women, they have never met anybody else with ovarian cancer and then they come to our walk and realize: ‘Oh, I am not alone in this and all my community is coming out to support me in this disease,’” says Crawford.
In 2008, the month of September was designated as the national ovarian cancer awareness month in Canada, but there is still a lot to do. Ovarian cancer cases are not as numerous as other more common types of cancer, therefore the research devoted to it is limited. Only 2.1 per cent of donations for cancer in the country are directed towards ovarian cancer, according to Ovarian Cancer Canada. Because of the lack of research funds received, Crawford says that scientists do their best to try advancing in research.
“What we heard from researchers and clinicians is that ovarian cancer kind of laughs in the face of a lot of typical treatments,” says Crawford.
The organization funds grants and conferences as a way of building capacity in the world of research, but it receives no government funding and lives off donations.
“We are too small to fund the massive projects that need to be funded, so what we try to do is think strategically,” says Crawford.
Ovarian Cancer Canada started and supported the first tissue banks for the disease across Canada. Those banks provide scientists with clinical specimens to study. Crawford says that now women in the country, when going for surgery, can choose to donate their tissue and tumours for research, which gives researchers real samples to work on. There are tissue banks in Ottawa, Vancouver, Montreal, Toronto and Edmonton.
But other than making people aware about the disease and raising funds for research, Ovarian Cancer Canada has been working on making families aware about how important it is to take care of the woman in their families after the cancer. Crawford says that many women struggle to go back to their normal lives after months fighting the disease.
“Everybody kind of assumes in your circle that everything is great and you can go back to cooking dinner.”
After so many months being seen by doctors and with the high chances of recurrence, Crawford says that those patients need emotional support.
“I often say this is like PTSD. You have gone through something so horrific,” says Crawford.
Ovarian cancer research in Canada
The discovery of the BRCA 1 and BRCA 2 genes and the ability to test for them are crucial accomplishments regarding ovarian cancer in the past years. Some women, though, have been refused coverage by life and health insurance companies in Canada once the insurers were informed about a family history of ovarian cancer.
In March 2017, the House of Commons voted to pass Bill S-201, the Genetic Discrimination Act, to guarantee that women can get tested without fear of reprisal. Ovarian Cancer Canada and the affected community fought for the approval of the Act. Under its provisions, women are not obliged to share their genetic information with insurers.
“We have a public health system, so most of our needs are covered, but not all,” says Dr. Barbara Vanderhyden, a member of the board of directors of Ovarian Cancer Canada. “And so, to be able to say that the health insurance companies can say: ‘We will not cover you unless you have this test done,’ especially if you have a family history, that is not right and that had to stop.”
Dr. Vanderhyden has been researching the disease as the Corinne Boyer Chair in Ovarian Cancer Research for over 15 years. She says that when she began her studies into the disease, there were only two other scientists in Canada focusing on ovarian cancer, one in Montreal and one in Vancouver.
In the past, all patients with ovarian cancer would receive the same treatment, but now scientists know that there are different types of ovarian cancer and each type reacts differently to chemotherapy.
“That was the first big thing. We now know the miraculous basis of those different subtypes,” says Dr. Barbara Vanderhyden. “Then the treatments that should be giving to them should be different as well.”
Research done over the last decade has also indicated that the tumours themselves may not begin in the ovaries. According to Dr. Vanderhyden, tumours might begin in the endometrium, which is the inner lining of the uterus, or the fallopian tube, for example, but because they grow well in the ovary, they are normally diagnosed there.
“If we remove the ovary, we will not remove maybe the source of many different subtypes of ovarian cancer, so we have to figure it out,” she says. “Prevention becomes much more complicated because now it could be the fallopian tube, it could be the endometrium, it could be the ovary, and so what do you do, just take out the whole reproductive tract?”
Although it may seem that there has not been much progress in combatting the disease, Dr. Vanderhyden says that a lot has been done to allow researchers to better understand ovarian cancer, but the information needs to be translated into better ways to treat patients.
“We had to understand what we are dealing with before we can come up with better treatments and so we are at that point right now,” says Dr. Vanderhyden.
For the past year and a half, Dr. Vanderhyden’s team has been working towards finding immunotherapies that work with ovarian cancer. Immunotherapy is a treatment that boosts the natural defenses of the body to kill only cancer cells.
The first immunotherapy was approved in 2010 by the FDA in the U.S. to treat prostate cancer. After that, there has been approval to treat other types of cancer such as melanoma, chronic lymphocytic leukemia and lung cancer, however, when it comes to ovarian cancer, immunotherapy is still not as effective.
According to Dr. Vanderhyden, only about 15 percent of ovarian cancer patients respond well to immunotherapy and there is still no explanation as to why immunotherapy does not work in all cases.
“There are all kinds of immunotherapies, so we need to find ones that we can develop and design that are more effective,” says Dr. Vanderhyden. “That is what my lab is currently working on to a great extent, coming up with better treatment options for women with ovarian cancer.”
Meanwhile, Dr. Vanderhyden explains that making people aware of ovarian cancer and its symptoms should be a priority.
“The symptoms are the big thing. I think if we want to let people know, we need to let them know that this is a deadly disease and that they need to be aware of the symptoms because that is the only way we can detect the disease early.”
The latest findings
The first chemotherapy drug that made a difference in ovarian cancer was discovered in the early 1980s, according to Dr. Walter Gotlieb, former president of the Society of Gynecologic Oncology of Canada. He says that in the past, every patient with ovarian cancer would be treated identically, but in May 2018 Health Canada approved a drug that will change the way ovarian cancer patients are treated in the country.
The drug, called Lynparza, received the Notice of Compliance by Health Canada in 2016, which according to Dr. Barbara Vanderhyden confirmed that the company had done “the necessary work on the drug and submitted all the required paperwork.” In Europe and United States the drug, called PARP inhibitor, has been available since 2014.
“PARP inhibitors work on the mechanism of the cell that is specifically abnormal, targeting only cancer cells, not affecting other cells in the body,” says Dr. Gotlieb.
The new drug is effective mostly in patients who have a BRCA mutation.
As for the near future, Dr. Vanderhyden says that although there is much promising research being done in diagnosing the disease earlier, she does not see any immediate solution. Nonetheless, strategies for prevention may yield significant results.
“We are actually looking at something now that we think could be a prevention strategy,” says Dr. Vanderhyden. “We have to prove it first. We have some good ideas, we have some very small number of cases where it looks very promising, but we have to get money to do a very large-scale study.”
“We had to understand what we are dealing with before we can come up with better treatments and so we are at that point right now,” says Dr. Vanderhyden.
The next step, according to Dr. Vanderhyden, is to put a team of researchers together and apply for grants, but she did not want to give more details on the possible discovery.
“There are women who might already be protected without knowing it because of some of the medications they are taking, that is all I am going to say.”
One drug that has been proven to reduce the risk of ovarian cancer is the birth control pill. According to Dr. Vanderhyden, there are only two things that researchers know will reduce the risk of ovarian cancer dramatically: taking the pill and getting pregnant.
“It is not saying you take the pill and you do not have a risk. It is saying that if you took 100 people and put 50 of them on the pill and 50 not, the number that are going to get ovarian cancer would be less in the group overall that were taking the pill,” she says.
November of 2018 marked almost eight years with no recurrence for Andresa. Since she has not had any changes in her cancer marks, last November she was discharged from her follow-up appointments at Princess Margaret Cancer Centre.
Andresa tries to avoid reading about ovarian cancer after having gone through the disease.
“People say: ‘Andresa you are a very positive person, so that is why you overcame cancer,’ and I say: ‘No, I am not a very positive person, actually I am the opposite,’ like inside of me, sometimes I think the worst, you know?”
Dr. Bernardini says that he is not aware of “any scientific data where you can will the cancer away.” That being said, in his opinion, if someone caries a positive attitude that probably translates into a number of other elements in their life and “that positive attitude probably helps at some level.”
For Andresa, it was her faith that kept her strong and has inspired so many people around her.
“I was depending on God all the time, but He was flourishing through me, so I had strength that I did not think I had. I had hope, I had joy, and this was contagious to people,” she says.
Andresa finished her Ph.D. in 2018 and is still living in Toronto with her husband and her daughter, who is now two years old. She says that she does not plan on getting Maria Luiza tested for the BRCA gene, but she is making sure her daughter has the healthiest diet and also lives in a healthy environment. When Maria Luiza is older Andresa plans to tell her all about her journey and then her daughter can decide herself whether or not she wants to get tested.
Andresa has been a postdoctoral fellow at the Toronto Rehabilitation Institute since July 2018. She and her husband are still trying to have another baby. She says that cancer made her change not only what she chooses to eat, but also the way she deals with problems and frustrations in life.
“Even if bad things happen to you, just hang in there and learn the lessons that are there to learn, and move on. Because in this life we will always have trouble.”
She says that more than anything, she is thankful to have another chance to live.
“My appreciation for life has changed, my appreciation for my family and for sure I want to live a better life.”