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 - but most women will be diagnosed with high-grade serous (most common), low-grade serous, mucinous, clear cell, endometrioid, germ cell or sex cord stromal. Borderline tumours are distinct from ovarian cancer - but share some similarities in regards to symptoms, staging and surgery.
In New Zealand one woman is diagnosed every day and approximately one in seventy 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 normally removes abnormal and damaged cells. Cancer cells can hide from the immune system and they can also use the immune system to protect themselves from being killed.
Anatomy
The ovaries are a pair of female reproductive organs located 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 and risk factors for ovarian cancer.
How is ovarian cancer diagnosed?
Ovarian cancer can be detected by a pelvic exam, CA125 blood test, transvaginal ultrasound or other imaging such as a CT or MRI.
In order to confirm the diagnosis, a sample of the tumour is examined under a microscope by a specialist doctor called a pathologist. Based on the appearance, 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 straight forward and sometimes a pathologist may ask for another pathologist to review the sample (within New Zealand or overseas).
High-grade serous ovarian cancer is the most common type of ovarian cancer. All of the other types are considered rare ovarian cancers. Though they are individually "rare", collectively up to 1 in 3 people with ovarian cancer will be diagnosed with a rare ovarian cancer. Clear cell, endometrioid, low-grade serous, mucinous, germ cell and sex-cord stromal account for the majority of rare ovarian cancer diagnoses.
How is Ovarian Cancer treated?
The treatment of ovarian cancer depends on the type of ovarian cancer, and the staging (spread).
Surgery
As a first step some people will have some form of surgery. People have better outcomes when this is performed by a gynae-oncologist.
There are nine gynae oncologists in New Zealand. They work in the three gynaecological cancer centres, Auckland, Wellington and Christchurch. A gynaecological oncologist is a surgeon who has trained in Obstetrics and Gynaecology and then has undergone further study to specialise in the field of gynaecological cancers.
The goal of surgery is usually to remove all visible cancer and/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 be removed - this is called a salpingo-oophorectomy.
People may also have their uterus removed (hysterectomy) and other tissue and organs like the ommentum, lymph nodes and appendix. Of note, if some of the bowel needs to be 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 prior to surgery. There are special 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 I: Cancer is confined to one or both ovaries
Stage IA: Growth is limited to one ovary with no tumour on the outside surface
Stage IB: Growth is limited to both ovaries with no tumour on external surfaces
Stage IC: Tumor is either stage IA or IB, but with tumor on surface of one or both ovaries
Stage II: Cancer has spread to the uterus or other nearby organs
Stage IIA: Extension and/or metastases of cancer to the uterus and/or fallopian tubes
Stage IIB: Extension of the cancer to other pelvic tissues
Stage IIC: Tumor is at either stage IIA or IIB, but with tumor on surface of one or both ovaries
Stage III: Cancer has spread to the lymph nodes or abdominal lining
Stage IIIA: Tumor limited to the true pelvis
Stage IIIB: Metastasis of abdominal peritoneal surfaces ≤ 2 cm. in diameter
Stage IIIC: Peritoneal metastasis beyond the pelvis > 2 cm. in diameter
Stage IV: 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 and medication and treatments will be given to manage this and pain.
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 there are any concerns during recovery.
Travelling home can be uncomfortable. A pillow under the seatbelt 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 size of the surgery it may 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 are removed, younger people who were 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 (thinking) 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 contraindicated 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 is normally decided in a multi-displinary meeting (MDM). Doctors present individual cases to a group of specialists who include gynae-oncologists, oncologists, pathologists and radiologists and collectively decide what treatment should be offered.
If the cancer is contained within the ovary, depending on the type of ovarian cancer, surgery may be the only treatment required. Otherwise most women will be 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 (anti) hormone 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 on high-grade serous and endometrioid cancer treatments we recommend reviewing the 2022 National Comprehensive Cancer Network's (NCCN) guidelines for ovarian cancer.
If you have a less common type of ovarian cancer - such as carcinomsarcoma (mixed malignant Mullerian tumour), clear cell, mucinous, low-grade serous/endometrioid, borderline, malignant sex cord-stromal or germ cell cancers we recommend you review the 2017 National Comprehensive Cancer Network's (NCCN) guidelines for ovarian cancer first. The 2017 guide explicitly references the treatment for these cancer types individually.
As the NCCN is an American resource keep in mind preferred treatments may differ in New Zealand and certain treatments discussed 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 do I need to be aware of during treatment and who can I contact if I have questions?
- Will I be treated in hospital and 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?
- Is it possible to recieve a copy of my pathology report and be cc'd into future correspondence?
(Adapted from the NCCN Ovarian Cancer booklet 2017)
Alternative and complimentary treatments
If you are considering taking an alternative or complimentary 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) and contains information on commonly found supplements.
Hair loss
Some common ovarian cancer treatments result in hair loss (but not all). Some people decide to have microblading and/or semi-permanent make up which can help retain the appearance of eyebrows/lashes in the absence of hair. Let your cancer team know if you are considering this. It must be done prior to the start of chemotherapy (because of 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 accept donations of hair to make wigs for children and adults with permanent hair loss. If you are interested you can learn read about the requirements for donating hair here. In exchange they make a small payment to yourself or a charity of your choice.
It’s your choice whether you use a head covering. While many people use wigs – there are lots of options for headscarfs 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 a lot of stress on women and their families. Many women find the involvement of a psychologist beneficial. Cancer doctors, GPs and the Cancer Society can help with a referral to a psychologist or counsellor.
Clinical Psychologists hold doctorate degrees and have specialized training in evidence-based talk therapies that can help reduce and relieve psychological suffering. Read more about normal psychological responses and types of psychological treatment. Additionally GPs may be able to prescribe medication or suggest other resources to help with symptoms.
1737 is another helpful service. It's free to use and funded by the NZ 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 to connect with others with the same diagnosis. In New Zealand you can join the online New Zealand Ovarian Cancer Support Group through Facebook.
In 2022 Cure Our Ovarian Cancer started the first national online zoom peer support group. We offer two support groups for people diagnosed - a newly diagnosed, and general group. The groups meet monthly and are facilitated by an experienced counsellor. It's an opportunity to connect and chat with others with a shared experience of ovarian cancer. We know not everyone has access to reliable internet which is why it's also possible to participate via a landline or cell phone.
Additionally the cancer society offer in person general cancer support groups. Internationally, the ovarian cancer section on the Inspire forum is popular with people diagnosed overseas. 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.
Support for Children and Young Adults
Coping with cancer at a young age can be challenging and specialist youth cancer charities offer support for children and young people diagnosed with cancer, but also support for young adults where a family member has been diagnosed.
Cancer in children and young adults is rare but ovarian cancer is the 8th most common cause of paediatric cancer in young adults and children (female). In 2018 five children and young people aged 0-24 years old developed ovarian cancer in New Zealand (source: Ministry of Health C56/57). Germ cell is the most common type in this age group.
Support Age 0-13 years
The Child Cancer Foundation supports children with a diagnosis of cancer and their families. They provide personalised support in five main areas: emotional well being, practical/financial support, social connection, building resilience and moving forward. This can look different for each family, but some examples include: Beads of Courage®, counselling, personal development grants, petrol vouchers, grocery deliveries, online group support programmes and peer-to-peer support through nationwide Whānau Connect Groups. one to one financial and emotional support for children with a diagnosis of cancer, and their family.
To learn more visit https://childcancer.org.nz/support-for-families or call 0800 4 CHILD
Support Age 13 to 24 years
Canteen supports rangatahi aged 13 to 24 years who have been impacted by cancer. This includes young people who have been diagnosed with cancer but also those who are impacted by a loved one's diagnosis or bereavement - including that of siblings, parents, grand parents and partners. CanTeen provides opportunities to meet other rangatahi who have had similar experiences. They hold recreation events, camps, online services, and offer one to one support through psychological clinicians and youth workers.
Anyone can self refer to Canteen, or refer someone they know with consent via their website https://www.canteen.org.nz/join-now
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 i.e. their emotional, spiritual, physical and social wellbeing to help them to live with their disease and their loved ones to cope with the situation. This is not the same as 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. You may also like to read "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 e.g children’s bereavement support, art therapy groups, bereaved men’s group
You can find your local hospice here: https://www.hospice.org.nz/what-is-hospice/find-your-local-hospice.
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 I ovarian cancer, 55% for stage II, 22% for stage III and 6% for stage IV. 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
This is a topic we don't talk about much in society and some people find it uncomfortable to discuss. But if you would like 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 have the protection of a Code of Rights. The Code of Health and Disability Services Consumers' Rights provides the following 10 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, you can contact the Health and Disability Advocacy Service or call their free phone: 0800 555 050. This is a free service. Whether your concern is big or small, they will do their best to support you.
Support from ACC
If you have been misdiagnosed, you may be eligible for financial and/or pyschological 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. That said, it is important to keep in mind, that whether your claim is accepted or not, your experience is still valid.
Cultural Needs
Many people, including Maori and Pacifica, may have specific cultural needs and beliefs that influence their health care 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 wish.
Interpretors
If English is not your first language, you can ask for a translator. It is a good idea to contact your healthcare provider in advance to request this, and 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 Connecing Now. They offer certified/accredited interpreters & translators on demand for over 180 languages and is accessible 24 hours a day, 7 days a week. A professional interpreter is the most qualified person to help you be fully informed about your healthcare but you can usually bring a family member or trusted friend for secondary support.
Finances
Cancer places pressure everywhere including 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 NZ 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 has been made of the back of a clinical trial. A clinical trial is an opportunity to advance cancer research, and receive newer treatments but there also may be unique risks involved. 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 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:
More detailed information about specific types of ovarian cancer
Ovarian Cancer Topics
- Support Groups
- Holiday home stays
- Cognitive function and ovarian cancer - tips for 'cancer brain'
- Mental health and ovarian cancer
- Sex and Cancer
- Palliative Care
- End of Life
- Clinical Trials
- Useful Links