Ovarian Cancer in New Zealand
What is Ovarian Cancer?
Ovarian Cancer is the name given to 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, sex cord or stromal.
In New Zealand 5 to 6 women are diagnosed every week and one in seventy will be affected in their lifetime.
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.
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 give a definite diagnosis, a biopsy is taken. This is when a sample of the tumour is removed from the body surgically. A specialised doctor called a pathologist then examines the sample under a microscope. Based on the appearance, and other tests, they will make a diagnosis.
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).
How is Ovarian Cancer treated?
The treatment of ovarian cancer depends on the type of ovarian cancer, and the staging (spread).
As a first step some people will have some form of surgery. People have better outcomes when this is performed by a gynae-oncologist. A gynae-oncologist is a gynaecologist who has completed an additional three years specialising in gynaecological cancer surgery and management.
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. You can read about Lindsey’s experience living with a stoma on our international resource site.
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.
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. Dunedin women can also apply to join the Ex-Pinkt cancer gym, which accepts women with ovarian cancer in certain circumstances, and provides supervised cancer friendly exercise.
If both ovaries are removed, young 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.
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 different cancer treatments we recommend reviewing the 2017 National Comprehensive Cancer Network’s (NCCN) guidelines for ovarian cancer. It lists the common treatments for high-grade serous, carcinomsarcoma (mixed malignant Mullerian tumour), clear cell, mucinous, low-grade serous/endometrioid, borderline, malignant sex cord-stromal and germ cell cancers. They have released a newer resource for high-grade serous cancer here. As this is an American resource keep in mind preferred treatments may differ in New Zealand and certain treatments may not be funded.
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?
- Are there any non-funded treatment options, or 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.
Some common cancer treatments result in hair loss (but not all). 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.
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.
Clinical Psychologists hold doctorate degrees and have specialized training in evidence-based talk therapies that can help reduce and relieve psychological suffering. You can read more about psychology and ovarian cancer on our international resources site. Additionally GPs may be able to prescribe medication or suggest other resources to help with symptoms.
Finding a support group
A diagnosis of ovarian cancer can feel lonely and isolating. Many women 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.
Additionally the cancer society offer in person general cancer support groups. Internationally, the ovarian cancer section on the Inspire forum is popular with women 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.
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 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 on our international resource site. 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.
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” on our international resource site (note some of the other site resources are specific to low-grade serous cancer). 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
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.
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.
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 Ezispeak. Ezispeak offer certified/accredited interpreters & translators on demand for over 180 languages and is accessible 24 hours a day, 7 days a week. They can provide a video interpreter with three hours notice, or a telephone interpreter on demand. 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.
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. You can find more information about government assistance on the Work and Income website or through a social worker.
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.