Ovarian Cancer Guide
Ovarian cancer in New Zealand
What is ovarian cancer?
Ovarian cancer is the name commonly used for cancer that develops in the ovary, fallopian tube or peritoneum (lining of the abdomen).
There are many different types of ovarian cancer including:
- high-grade serous (most common)
- low-grade serous
- mucinous
- clear cell
- endometrioid
- germ cell
- sex cord-stromal
Borderline tumours are distinct from ovarian cancer, but share some similarities regarding symptoms, staging and surgery.
In New Zealand, one woman gets diagnosed with ovarian cancer every day, and approximately one in seventy women will be affected in their lifetime.
Cancer basics
Cancer cells are abnormal cells in the body that grow uncontrollably. In ovarian cancer, they form solid tumours (masses of tissue).
Cancer cells can break away from the first (primary) tumour and spread to and invade other tissues (metastasis); this can cause damage to how the body functions. Cancer cells can influence the surrounding tissues, molecules and blood vessels to help the cancer grow.
The immune system will normally remove abnormal and damaged cells, but cancer cells can hide from the immune system and can also use the immune system to protect themselves from being killed.
Anatomy
The ovaries are a pair of female reproductive organs on either side of the uterus (womb). Epithelial cells line the surface of the ovary. Each ovary is about the size and shape of an almond; they connect to the uterus via a long, thin tube called the fallopian tube. The ovary produces eggs, which travel through the fallopian tube to the uterus. They also produce oestrogen and progesterone hormones.
Ovarian cancer symptoms and risk factors
Visit our symptoms page to learn more about the symptoms or our risk factors page to learn about the causes and risk factors for ovarian cancer.
Detection and diagnosis of ovarian cancer
Ovarian cancer is detected by:
- a pelvic exam
- CA125 blood test
- transvaginal ultrasound
- other imaging, such as a CT or MRI
To confirm the diagnosis of ovarian cancer, a sample of the tumour is examined under a microscope by a specialist doctor called a pathologist. Based on the appearance of the tumour and other tests, they will make a diagnosis. The growth could be benign (not cancer), borderline (pre-cancer) or cancer.
Depending on the type of ovarian cancer, the diagnosis is not always straightforward, and sometimes, a pathologist may ask for another pathologist to review the sample (within New Zealand or overseas).
Types of ovarian cancer, listed by cell type
* indicates tumours which can also be non-cancerous
Epithelial tumours:
Approximately 90-95% of the different types of ovarian cancers start in the epithelial cells. These are the cells that line the internal and external surfaces of the body.
- High-grade serous carcinoma
- Low-grade serous carcinoma
- Mucinous carcinoma
- Endometrioid carcinoma
- Clear cell carcinoma
- Malignant Brenner tumour
- Seromucinous carcinoma
- Undifferentiated carcinoma
Mesenchymal tumours:
These begin in the cells that develop into connective tissue.
- Endometrioid stromal sarcoma (low-grade, high-grade)
Mixed epithelial and mesenchymal
- Adenosarcoma
- Carcinosarcoma
Sex cord-stromal tumours:
These start in the tissue that supports the ovaries.
- Cellular fibroma*
- Fibrosarcoma
- Malignant steroid cell tumour
- Adult granulosa cell tumour
- Juvenile granulosa cell tumour
- Sertoli cell tumour*
- Sex cord tumour with annular tubules*
- Sertoli-Leydig cell tumour (if poorly differentiated, Retiform or sex cord-stromal tumours NOS)
Germ cell tumours:
These involve the cells that eggs develop from.
- Dysgerminoma
- Yolk sac tumour
- Embryonal carcinoma
- Non Gestational choriocarcinoma
- Mature teratoma
- Immature teratoma
- Mixed germ cell tumour
Monodermal teratoma and somatic-type tumours arising from a dermoid cyst:
These tumours can contain tissues normally found elsewhere in the body.
- Malignant Struma ovarii
- Mucinous Carcinoid
- Sebaceous carcinoma
- Squamous cell carcinoma
Germ cell-sex cord-stromal tumours:
- Mixed germ cell-sex cord-stromal tumour – unclassified*
Miscellaneous tumours:
- Adenocarcinoma of rete ovarii
- Wolffian tumour*
- Small cell carcinoma (hypercalcemic type, pulmonary type)
- Paraganglioma*
- Solid pseudopapillary neoplasm*
Mesothelial tumours:
Mesothelial cells are pavement-like cells that provide a slippery, protective surface.
- Mesothelioma*
Lymphoid and Myeloid tumours:
Lymphoid is tissue in which white blood cells develop. Myeloid tumours involve blood-forming cells usually found in bone marrow.
- Lymphomas
- Plasmacytoma
- Myeloid neoplasms
In addition, people can also be diagnosed with borderline tumours. Historically, these epithelial tumours were thought to be ovarian cancer but are now known to be different from ovarian cancer – though there are similarities in their diagnosis, staging and surgery, and gynaecological oncology is often involved in their management.
High-grade serous ovarian cancer is the most common type of ovarian cancer. All other types – clear cell, endometrioid, low-grade serous, mucinous, germ cell and sex-cord stromal – are considered rare ovarian cancers. Though they are individually rare, collectively, up to one in three people with ovarian cancer will be diagnosed with a rare ovarian cancer.
Ovarian cancer treatments
Surgery
As a first step, some people will have some form of surgery; surgery has better outcomes when performed by a gynaecological oncologist.
A gynaecological oncologist is a surgeon who has trained in Obstetrics and Gynaecology and has undergone further study to specialise in gynaecological cancers.
There are nine gynaecological oncologists in New Zealand, and they work in the three gynaecological cancer centres, Auckland, Wellington and Christchurch.
The goal of surgery is usually to remove all visible cancer or sample areas to determine how far the cancer has spread. As part of this process, the affected ovary(s) and fallopian tube(s) will usually get removed; this is called a salpingo-oophorectomy.
People may also have their uterus removed (hysterectomy) and other tissue and organs like the omentum, lymph nodes and appendix. Of note, if some of the bowel needs to get removed, women may be given a temporary or permanent stoma (which diverts faecal waste into a bag attached to the tummy). If this is likely, the surgeon will talk about it before surgery. There are specialist nurses trained in stomas, and some women find online support groups helpful.
Sometimes, if the cancer is advanced, medical treatment (usually chemotherapy) may be offered first to make surgery easier. If surgery is not possible or unlikely to be in a person’s best interests, medical treatment may still be an option.
Surgical staging
Staging is a standardised way of describing cancer growth and spread. Staging influences the type of treatment and prognosis of ovarian cancer.
- Stage 1: Cancer is confined to one or both ovaries
- Stage 1A: Growth is limited to one ovary with no tumour on the outside surface
- Stage 1B: Growth is limited to both ovaries with no tumour on external surfaces
- Stage 1C: Tumour is either stage 1A or 1B but with a tumour on the surface of one or both ovaries
- Stage 2: Cancer has spread to the uterus or other nearby organs
- Stage 2A: Extension and/or metastases of cancer to the uterus and/or fallopian tubes
- Stage 2B: Extension of the cancer to other pelvic tissues
- Stage 2C: The tumour is at either stage 2A or 2B but with a tumour on the surface of one or both ovaries
- Stage 3: Cancer has spread to the lymph nodes or abdominal lining
- Stage 3A: Tumour limited to the true pelvis
- Stage 3B: Metastasis of abdominal peritoneal surfaces is less than 2 cm in diameter
- Stage 3C: Peritoneal metastasis beyond the pelvis is greater than 2 cm in diameter
- Stage 4: Cancer has spread to distant organs, such as the lungs or liver
Ref: Society of Gynecologic Oncology
The type of ovarian cancer influences the likelihood of diagnosis at an early stage. Diagnosis at stage 1 is uncommon for high-grade serous and low-grade serous ovarian cancer, but over half of clear cell, mucinous, germ cell, endometrioid and sex cord ovarian cancers are diagnosed at stage 1.
Recovering from surgery
The doctors will usually try and get people moving after surgery early; this helps with recovery and reduces the risk of blood clots. Constipation and urinary retention are common; medication or treatments will help manage these.
Before discharge, an occupational therapist will make recommendations and loan equipment to help people function while they recover. A social worker may also visit. Additionally, the doctor and a hospital physiotherapist will give recommendations about what to expect during recovery, the level of activity that is safe during recovery and when it is ok to resume driving. They should also give information about who to contact if you have any concerns during recovery.
Travelling home can be uncomfortable; a pillow under the seat belt can help. If you are from out of town, you may wish to stay locally for a few extra days after the hospital discharges you; the Cancer Society may be able to help arrange accommodation.
Surgical recovery takes time; depending on the surgery, it may take months to a year to fully regain normal function. While physiotherapy is generally not funded, there is a New Zealand charity called Pinc and Steel that offers free physiotherapy treatment for Kiwis with cancer.
Additionally, some women find a gynaecological physiotherapist specialising in the pelvic floor to be helpful.
Surgical menopause
If both ovaries get removed, younger people who are premenopausal will experience surgical menopause; this can be more severe than natural menopause. Even if people have gone through menopause, they may still notice changes.
Symptoms can include hot flashes, night sweats, vaginal dryness, mood change, loss of bone density, hair and skin thinning, increased risk of heart disease, cognitive function (ability to think) changes and weight gain. Depending on the type of cancer, it may be possible to have hormone replacement therapy (HRT) to help with side effects.
If HRT is not recommended, there may be other non-hormonal treatments that doctors can suggest. For example, Replens is a non-hormonal vaginal moisturiser, selective serotonin inhibitors and gabapentin can help with hot flashes and mood change, and bone density and heart risk can be monitored and treated as necessary.
If HRT is not recommended, it is important to discuss any natural ‘menopause’ supplements with your doctor before taking them – they often contain compounds which mimic hormones.
Medical treatment
In New Zealand, cancer treatment will normally be decided in a multidisciplinary meeting (MDM). Doctors present individual cases to a group of specialists, including gynae-oncologists, oncologists, pathologists and radiologists, and collectively, they decide what treatment should get offered.
Depending on the type of ovarian cancer, if the cancer is contained within the ovary, surgery may be the only treatment required. Otherwise, most women will get offered by an oncologist some form of chemotherapy, the exact drugs depend on the diagnosis.
Depending on the cancer, some women may instead be offered hormone therapy (not to be mistaken for hormone replacement therapy) or targeted therapy or given this treatment after chemotherapy as a ‘maintenance’ treatment. In certain circumstances, particularly if the benefit from treatment is thought to be small, women may decide to have no treatment.
For detailed information, we recommend reviewing the National Comprehensive Cancer Network’s NCCN guidelines for ovarian cancer. As the NCCN is an American resource, be aware that preferred treatments may differ in New Zealand, and certain treatments in the guide may not be funded in New Zealand.
Questions to ask your doctor about treatment
- What treatment do you recommend?
- Does my age, general health, and other factors affect what treatment I am offered?
- What are the risks and benefits of each treatment?
- What about side effects?
- Can you tell me about non-funded treatment options available in New Zealand/overseas?
- Are there any clinical trials I can participate in?
- How common is my specific ovarian cancer, and what options do I have for a second opinion?
- How soon should I start treatment, and how long does treatment take?
- What symptoms should I be aware of during treatment, and who can I contact if I have questions?
- Will I be treated in the hospital; if so, where, and will I need to stay overnight?
- What can I do to prepare for treatment?
- How likely is it that I will be cancer-free after treatment?
- What is the chance the cancer will come back?
- Will I receive a copy of my pathology report, and can I be cc’d in future correspondence?
(Adapted from the NCCN Ovarian Cancer booklet 2017)
Alternative and complementary treatments
If you are considering taking an alternative or complementary treatment, it is important to discuss it with your oncologist, as they can sometimes interfere with cancer medication. About Herbs is a resource developed by Memorial Sloan Kettering Cancer Center (a large US cancer hospital based in New York), which contains information on commonly found supplements.
Hair loss
Some common ovarian cancer treatments result in hair loss. Some people decide to have microblading or semi-permanent make-up done, which can help retain the appearance of eyebrows and lashes in the absence of hair. Let your cancer team know if you are considering this, as any microblading or semi-permanent make-up must be completed before the start of chemotherapy due to the risk of infection.
If you lose your hair during treatment, you may be able to get financial assistance for wigs and hairpieces from the Ministry of Health.
Additionally Freedom Wigs in Dunedin accepts donations of hair to make wigs for children and adults with permanent hair loss. If you are interested in donating your hair, read about the requirements for donating hair. In exchange, they make a small payment to you or a charity you choose.
It’s your choice whether you use a head covering; many people use wigs and there are lots of options for headscarves too. Check out #headwraptutorial and #chemoheadwear on Instagram and TikTok for ideas. Hair grows back after treatment but may be softer, change colour and can be curly.
Mental health
Both surgery and an ovarian cancer diagnosis can put stress on women and their families. Many women find the involvement of a psychologist beneficial. Cancer doctors, GP’s and the Cancer Society can help with a referral to a psychologist or counsellor.
Clinical psychologists hold doctorate degrees and have specialised training in evidence-based talk therapies that can help reduce and relieve psychological suffering. Read more about psychological responses and ACT Therapy.
Additionally, GP’s may be able to prescribe medication or suggest other resources to help with symptoms.
1737 is another helpful service that is free to use and is funded by the New Zealand Government. People can text or call 1737 at any time of the day or night to be connected to speak to a trained counsellor.
Finding a support group
A diagnosis of ovarian cancer can feel lonely and isolating. Many people diagnosed find it helpful connecting with others with the same diagnosis.
OCFNZ runs two online peer-support groups monthly to help connect people living with ovarian cancer. These groups are facilitated by our counsellor, Lisa Almand, and give people the opportunity to connect and share their experiences with ovarian cancer.
You can join the online New Zealand Ovarian Cancer Support Group through Facebook – our founder, Jane Ludemann, is an administrator.
Additionally, the Cancer Society offers in-person general cancer support groups.
Internationally, the ovarian cancer section on the Inspire forum is popular. There are also a lot of different groups on Facebook, including a younger women group and subtype-specific groups, including low-grade serous carcinoma, mucinous carcinoma, germ cell carcinoma and borderline tumours.
Recurrence and progression
If ovarian cancer comes back after treatment, this is called a recurrence. Ovarian cancer typically recurs when a small number of cancer cells survive the treatment process but are not detected on tests.
After treatment, these cancer cells may grow into tumours. If there is still visible cancer after treatment, and it continues to grow, this is called progression. Options for recurrence and progression may include surgery, the same treatment or a new treatment, or sometimes radiation therapy. Your cancer team will discuss options with you.
Palliative care
Palliative care is the holistic care of people with advanced and progressive disease, which takes into account their whole selves, for example their emotional, spiritual, physical and social well-being, to help them live with their disease and their loved ones to cope with the situation; this is not the same as the end of life care though there can be overlap. Even if the cancer is not curable, there may be treatments which can help.
You can read Diane’s perspective as a palliative care nurse specialist receiving palliative care, or “Everything Happens for a Reason – and other lies I used to love” by Kate Bowler, a young theology lecturer living with incurable stage 4 bowel cancer.
Hospices in New Zealand offer a variety of services, which may include:
- Medical and nursing care
- Cultural support and liaison
- Pain and symptom control therapies, including physiotherapy and complementary therapies
- Spiritual support and care
- Practical and financial advice
- Bereavement care
- Training and support services for family carers
- Support groups eg. children’s bereavement support, art therapy groups, bereaved men’s group
Prognosis
Many types of ovarian cancer have high recurrence rates and poor long-term survival. Generally speaking, the five-year relative survival rate is:
- over 90% for stage 1 ovarian cancer
- 55% for stage 2
- 22% for stage 3
- 6% for stage 4
But this varies depending on the specific type and stage of ovarian cancer, and it’s worth noting that certain types of ovarian cancer are very curable even if diagnosed at an advanced stage.
Doctors estimate prognosis based on many factors, including studies looking at outcomes for women with specific types and stages of ovarian cancer and their personal experience. They can make good guesses, but they can not say with 100% certainty how much time an individual will have.
End of life
We don’t talk about end of life much in society, and some people find it uncomfortable to discuss. But if you want to know more, you can read a palliative care doctor’s perspective on “What we need to know about dying to plan well and fear less“. Dr Mannix is also the author of “With The End In Mind”.
Other books discussing end-of-life care include “Being Mortal” by Atul Gawande, “When Breath Becomes Air” by Paul Kalanithi and “Lap of Honour” by Gaby Eirew and Dr Pippa Hawley. The authors of Lap of Honour have also developed an app called Record Me Now to help leave lasting memories for loved ones.
Your rights
When you use a health or disability service in New Zealand, you get protected by the Code of Health and Disability Services Consumers’ Right, which provides the following ten rights:
- The right to be treated with respect
- The right to freedom from discrimination, coercion, harassment, and exploitation
- The right to dignity and independence
- The right to services of an appropriate standard
- The right to effective communication
- The right to be fully informed
- The right to make an informed choice and give informed consent
- The right to support
- Rights in respect of teaching or research
- The right to complain
If you have any questions about your rights or wish to raise concerns, contact the Health and Disability Advocacy Service or call their free phone: 0800 555 050; this is a free service, and whether your concern is big or small, they will do their best to support you.
Support from ACC
If you get misdiagnosed, you may be eligible for financial or psychological support from ACC. You can find more information about the process in their Treatment Injury Guide; the total payments for gynaecological cancer claims by ACC increased by 20 times between 2017 and 2021, suggesting it is becoming easier to get a claim accepted. It is important to remember that whether your claim is accepted or not, your experience is still valid.
Cultural needs
Many people, including Māori and Pacifica, may have specific cultural needs and beliefs that influence their healthcare needs. Doctors receive training in cultural competence and are very open to discussing any cultural considerations you wish to raise, with a culturally appropriate support person present if you choose.
Translators
When English is not your first language, you can ask for a translator to support you. It is a good idea to contact your healthcare provider before your appointment to request this and to double-check that they have allowed for extra time during your appointment.
Some hospitals offer on-site interpretation services. If an on-site interpretation service is not available, your doctor can provide a professional telephone/video interpreting service at no cost to you through Connecting Now. They offer certified interpreters and translators on demand for over 180 languages, and the service is accessible 24 hours a day, seven days a week.
A professional interpreter is the most qualified person to help completely understand your healthcare, but you can usually bring a family member or trusted friend for secondary support.
Finances
Cancer places pressure everywhere, including on family finances. There may be government grants that you can apply for particularly if you need to travel for treatment, have to stop work (or run out of sick leave) or experience urgent or unexpected costs. Additionally, you may be able to withdraw your KiwiSaver account for health reasons. Some banks may offer mortgage holidays, and some insurance policies will allow advanced payment in the case of serious illness.
Sorted is a service run by the New Zealand Government Te Ara Ahunga Ora Retirement Commission. Their “Managing your money after being diagnosed with a serious or terminal illness” gives advice on talking about finances, managing debt with reduced income, borrowing options to cover treatment costs, your options and rights for housing, managing work when you are seriously ill, available financial support, managing insurance claims, legal support and information about enduring powers of attorney.
You can find more information about government assistance on the Work and Income website or through a social worker.
Clinical trials
Almost every advance in cancer treatment was because of a clinical trial. Clinical trials are an opportunity to advance cancer research and receive newer treatments, but may involve unique risks.
ClinicalTrials.gov is a resource provided by the U.S. National Library of Medicine that lists international trials across 207 countries; you can also find information on trials specific to New Zealand and Australia on the ANZCTR registry.
As of 2021, there are five clinical trials for women with ovarian cancer in New Zealand and over 40 in Australia.
More information
Information about specific types of ovarian cancer
Ovarian cancer topics
Health professionals
Note: this content has been reviewed by a gynaecological cancer specialist in New Zealand. Information is provided for general use and should not be a substitute for professional medical advice.
Last reviewed: 16 January 2024