Ovarian cancer is still a mystery to many women even though 3,100 Canadians are diagnosed with it every year and another 1,950 die of it*. It is the fifth most common cancer for women, and the most serious women’s cancer.** The statistics are staggering and sadly, unlike other types of cancer, there is no reliable screening test for it. More than half of the women diagnosed with ovarian cancer, 70%, are diagnosed with advanced cancer (Stage III or IV). Yet, there is a discrepancy in terms of awareness of the disease. As women, we need more education on diseases, like ovarian cancer. The challenge with ovarian cancer is that it doesn’t have obvious symptoms.
We wanted to learn more, and give you an overview of what you need to know about the disease so we turned to an expert. Dr. Taymaa May is an expert in gynecological malignancies, in particular, ovarian cancer. She is a Gynecologic Oncologist at Princess Margaret Cancer Centre, Surgical Oncology Lead for Cancer Care Ontario (CCO), Executive Director of Specialty Clinical Programs, Department of Surgical Oncology Chair, Gynecologic Oncology Group of Ontario, Associate Professor, University of Toronto.
When we spoke, she gave us insight into ovarian cancer and hope for the future. Here is more of our conversation:
Who is most likely to be at risk for ovarian cancer?
There are different types of ovarian cancers, and the more common types of ovarian cancer generally affect post-menopausal women in their 50s and 60s. There is a sub-group of women who have a higher risk of ovarian cancer than the general population. They are women who have a genetic predisposition to certain tumours including ovarian cancer.
For women who have tested positive for the BRCA (Breast Cancer gene) gene, what preventative measures can they take to reduce their risk of ovarian cancer?
For the patient population that carries the BRCA mutation, the best evidence for risk reduction of developing ovarian cancer is the surgical removal of the fallopian tubes (tubes) and ovaries. The age in which we recommend removal of the ovaries depends on which type of mutation that they have. This is known as a prophylactic surgery. Prophylaxis in general, means prevention in medicine. Prophylactic surgery to prevent ovarian cancer is usually done laparoscopically meaning that it is minimally invasive. It is a smaller procedure and it not generally performed by an oncologist. It is done by a general gynecologist and there are a few fantastic clinics across Canada that specialize in risk reduction strategies for women.
They have surgical gynecologists and genetic counsellors so that there is a comprehensive plan for women who are at risk for developing ovarian cancer. They will undergo counseling, genetic testing and then, based on their family situation and once they are ready, they can have that surgery. It is an important and significant change in a woman’s health to undergo removal of the tubes and the ovaries. It does, however, decrease the risk of ovarian cancer significantly, and it impacts their survival in a very positive way.
If a woman did not test positive for the BRCA gene, are there other precautions that they can take?
This really highlights the limitations of our genetic testing to date. There are some genetic mutations that are well-studied and we really understand their link to some cancers including ovarian cancer. There is still a very wide range of DNA and mutation changes that we still have not fully studied. There might be a mutation that is still not identified in a family that increases the risk for the individual in developing ovarian cancer. If they have a strong family history, some of the studies show that taking the oral contraceptive pill for an extended period of time (up to ten years) can reduce the risk of developing ovarian cancer.
One of the biggest challenges of ovarian cancer management is the lack of screening. For breast cancer, we do have a very good screening strategy for women who are at risk. Other cancers that we have proven tests for include colorectal cancer (a colonoscopy) or cervical cancer (pap smears). Those types of tumours are very well equipped because we can prevent them or catch them early.
There were several studies that included a large number of women that potentially might be at risk for developing ovarian cancer and to date there is not one test that is a screening test for the average woman for the prevention of ovarian cancer. Sadly, screening is not available. Prevention is available for women that are at risk with a genetic mutation with the surgical removal of the ovaries and the tubes.
Ovarian cancer is also called the silent killer. What symptoms should women look out for? Why is it so difficult to diagnose?
It is a big challenge in ovarian cancer. The ovaries are situated inside the body, in the abdomen. They are quite small to begin with and when ovarian cancer is diagnosed, the majority of women have advanced stage disease, meaning that the disease has already spread. It spreads, most commonly, inside the abdomen. Women develop what are called deposits of small tumours throughout multiple locations of the bowel. Symptoms often relate to small changes in bowel function, distention or swelling in the belly and that can be attributed to many different things. Some people think it’s related to indigestion, constipation or diarrhea. It can take several months before someone can truly think that it’s abnormal.
There isn’t one alarming symptom, such as bleeding or sudden pain where someone would say that it was abnormal enough to seek urgent medical attention. We encourage people to reach out to their family physician even if there is a slight change in their bowel habits or if they are feeling bloated or start to vomit. It is better to see your family doctor to have things double checked. If there is something there, you can get to see the oncologist quickly.
Cancer is staged and graded. Speak to what each of the four stages means in terms of ovarian cancer?
People often mix up the terms grade and stage. The grade tells how aggressive is this type of cancer. A cancer that is low grade is not an aggressive cancer where if it is high grade, that means it’s more aggressive.
Stage on the other hand tells us where is this cancer compared to the original location. In ovarian cancer for example, if it’s contained to the ovary, that would be Stage I. Stage II would be a little bit further advanced, while Stage III is more advanced and Stage IV is metastasized. Cancer that is already at an advanced stage is usually Stage III and IV and it has spread beyond the pelvis and also includes the bowel, the inside lining of the belly, potentially the liver and possibly lung metastases.
Having said that, we can treat ovarian cancer successfully because 70% of women have the more common types of ovarian tumour called epithelial tumour and the majority of research is done in that particular group of women. We know the types of medications that work, the type of surgery that works and we can often develop a very good and personalized treatment program. When we have a referral for suspected or confirmed ovarian cancer at Princess Margaret, we have a special ovarian cancer program. We have imaging done very rapidly and we have a weekly meetings to review these cases in a multidisciplinary fashion. These meetings include:
- the medical oncologist
- the radiologist who can share the details of the scans so that the surgical oncologist can plan the surgery properly and
- the pathologist who can understand the type of tumour that we are dealing with.
We make sure that if the person needs surgery, that we identify the locations of the tumour and the extent of the surgery that they need. We have a rapid plan for women with this disease and we initiate the treatment quickly.
There isn’t just one type of ovarian cancer – explain the differences between the tumour types.
Understanding the type of ovarian cancer and really any type of cancer is critical. It includes the biology of the tumour and the type of treatment that a woman would benefit from based on the type of tumour that she has. There are types of tumours in the ovary that happen in young women including teens and early 20s. They are very different than the very common types of tumours that can happen in women after the age of menopause.
In young women, we often see something called germ cell tumours. Ovaries have eggs cells that can change and become cancerous. The treatment for those types of tumours is very different from the common types of ovarian cancer that happen to women after menopause. After menopause, the types of tissue that change into cancer are the tissues that covers the ovaries or hold the ovaries together. The treatment for that type of cancer is different. There are different chemotherapies, different surgeries and the prognosis is different. Understanding the type of tumour that we are dealing with is the first step in personalizing the treatment for the woman.
Women are often just as afraid of the treatment as they are of the disease. What should a woman know about her treatment options?
We don’t have a generalized protocol for everyone. Thanks to research, we do know what the most effective options there are for different types and stages of tumours. With every woman that we see, we discuss the treatment options, including options for clinical trials that they potentially may qualify for. We discuss the side effects of treatment. We also discuss the side effects of not treating the cancer which is also very scary. Not treating a cancer that is growing is also debilitating and has it’s own set of side effects.
We recognize that this is a challenging time within a person’s life so we have nursing support, social workers and psychosocial oncology. Our psychologists and psychiatrists specialize in woman and families going through cancer. There is an impact on patient, on her spouse, kids, parents and other family members who may also be scared if the mutation runs in their family.
What I usually tell my patients is that this is a significant period of time in their life. It will be busy,it will be intensive and you will go through a lot of treatment. We usually come to the best treatment strategy for that particular woman together as a team. Whether it is a combination of surgery, chemotherapy, clinical trials and targeted therapies – once we have a treatment plan, we get together every week so the person is not alone.
We have team members available in person or over the phone for questions, support or to vent. We always keep our eye on the big picture – long-term survival. It is such a momentous occasion when we have a clear CT Scan and the person goes into remission and that makes this journey worthwhile. The important thing is that we maximize quality of life, while at the same time, maximize our chance for the best survival outcome.
What is your advice to people that are caregivers or support people for cancer patients?
It is key for every person to have their own support system whether it is family or friends. It is critical to involve them in understanding the disease, treatment and journey. Predicting what will happen is important because some things may not be obvious and might be scary if they weren’t aware that could happen. Once we do surgery for example, we do give a lot of information to the family members to help them anticipate what is normal after cancer surgery. Often the surgeries that we do for ovarian cancer are quite extensive. Patients might have changes to their bodies like ostomy bags which can change the function of the body for awhile and family members are often educated on what to expect and who to call for emergencies.
We encourage family members and support people to speak with our social workers, both for the sake of the patient but also for because they are going through the journey and transitioning that relationship into a caregiver relationship. Often, this is temporary and hopefully, once the cancer goes into remission, and the person recovers, the relationship dynamic can go back to normal. For a time, it will change. We need to recognize that it is a struggle and we can support both the patient and caregiver through that.
What questions should a woman be asking her doctor?
If they have a suspicion or are worried, and they see their family physician, I encourage people to ask any questions. It is better to call and be reassured versus waiting too long. They should ask what tests they may benefit from for the symptoms they are experiencing. They should also ask their family doctor what are they thinking of? What is their differential, meaning what are the list of concerns that family doctor has as the patient is listing these symptoms? What could be causing these symptoms and how is the family doctor planning to rule out those diseases? If one of them is ovarian cancer, they can ask, how can we rule that out? What tests will be helpful?
Every patient needs hope. What new treatments are on the horizon?
I agree that every person needs hope and there is always a lot of opportunities for treatment and clinical trials. Ovarian cancer has gone through a lot clinical trials and a lot of interesting research. There are more targeted therapies which are systemic, that are given either orally or intravenously and they are different than chemotherapy. They target specific mutations within a specific tumour. There are ongoing studies on immune therapy in ovarian cancer.
From a research perspective, it is an interesting time in ovarian cancer research. There are a lot of opportunities for knowledge in understanding of what is beneficial and how we can maximize survival in patients with ovarian cancer. There are also surgical initiatives. We have our own labs at Princess Margaret and our research shows that there is a link between the timing of chemotherapy and surgery and recovery from surgery with minimal complications. Not delaying chemotherapy is critical in terms of long-term survival. We have integrated surgical innovation and new technology that we use as standard of care at Princess Margaret. For women that have ovarian cancer and bowel surgery, we use infrared technology to identify the blood supply at the end of surgery to minimize the risk of complication. We think that this will all improve both immediate and long-term outcomes.
Finally, as a gynecologic oncologist, you have ups and downs and very few people think of the impact on the doctor. Sometimes you are providing people with news that they are in remission. Sometimes, the news is sadder. How do you cope with days that aren’t so easy?
I look at my patients and am empowered by them. There is something unique about a cancer diagnosis that puts everything into perspective. These woman are amazing. They are resilient. They go through extensive treatment and extensive surgery, and all of them go through it with grace and dignity. I am really proud of their journey.
Whether the outcome is complete remission or whether there is a recurrence, it is still the exact same person and that is really empowering. When treatment doesn’t result in a complete remission and we have a recurrence, I often take that back to my research and say what can we do to improve this outcome? What type of tumours can we study further and get better treatment for? As a scientist at the University of Toronto, I take the challenging cases back to my lab and say how can we improve outcomes for the future so that every outcome is fantastic?
Cancer patients, including women with ovarian cancer, may have challenges with child care on treatment or appointment days. Princess Margaret Cancer Centre in Toronto has The Magic Castle which is a free child-care service for children up to 12 years old. They take care of your children so that you can go to your appointment or visit family at the hospital. One Life is hosting its inaugural fundraiser on Saturday, May 15, 2021 to help pay for The Magic Castle and to provide childcare for the 1,000 children who use the service annually. To learn more, go to onelifegala.com.
*Source – Canadian Cancer Society
**Source – Ovarian Cancer Canada