Ovarian cancer Q&A
It's amazing how little most of us know about ovarian cancer. But perhaps not that surprising once you realise that, though 6,800 women in the UK are diagnosed ovarian cancer every year, there's no specific national screening programme for it.
When we opened our discussion thread about ovarian cancer, it was clear you had lots of questions. So here, thanks to the experts at Ovarian Cancer Action, the leading ovarian cancer charity in the UK, are the (truly quite vital) answers.
Ovarian Cancer Action is the UK's leading ovarian cancer charity, working to give all women the very best chance of surviving ovarian cancer by raising awareness of the disease and its symptoms, and helping those who are diagnosed to live better with it.
Who's on our expert team?
Professor Hani Gabra is professor of medical oncology and head of the Molecular Therapeutics Unit at Imperial College London. He is director of the Ovarian Cancer Action Research Centre at the Hammersmith Campus of Imperial College and is lead cancer clinician for the gynaecological and gastrointestinal cancer service at Imperial College Healthcare NHS Trust.
Dr Sarah Blagden is a medical oncology consultant based at Imperial College (Hammersmith Hospital Campus). She has a special interest in managing ovarian cancer. She is also director of the Hammersmith Early Cancer Trials Unit.
Dr Sarah Blacklidge is the healthcare projects manager at Ovarian Cancer Action. Sarah liaises directly with GPs, primary care nurses, oncologists and women who have been diagnosed with ovarian cancer to ensure that healthcare professionals and women affected by the disease can share information and experiences with each other.
Wildsheepchase: I lost my best friend to ovarian cancer, aged 24. Many of the health professionals she came in to contact with in the run up to her diagnosis never looked into a pelvic exam or scan as ovarian cancer 'doesn't happen to young people'. If someone is concerned about their symptoms, and they are under 50, how can they make sure that ovarian cancer is an option that is investigated? By the time my friends cancer was caught, it was very advanced and untreatable. This was partly due to her age being a barrier to investigation.
WilfShelf: When women are worried about symptoms that fit the profile of ovarian cancer, but also fit symptoms of many other things much less serious, how should they proceed to talk to their healthcare professionals? Given that, saying what one is really worried about can be difficult in a health setting, what sort of 'script' can help women get the answers they want, without being dismissed, but without placing unnecessary pressures on resources either? It would be helpful to have the OC expert's advice on the crucial questions to ask GPs; and indeed the follow-up to their usual responses...
Dr Sarah Blacklidge: Unfortunately, it is not uncommon for us to hear of younger women who have been misdiagnosed because their GP believed they were too young to develop ovarian cancer. Around 80% of those diagnosed with ovarian cancer are over the age of 50. For this reason, some GPs may not consider including ovarian cancer in their investigations.
However, ovarian cancer can develop at any age, which highlights why it is so important that all women are aware of the disease and its symptoms - and visit their GP if they are concerned. Much of the awareness work that Ovarian cancer Action undertakes focuses on empowering women to feel confident in speaking to the GP about their concerns and asking them if they have considered ovarian cancer. Here are a number of pointers to help you discuss any concerns you may have about symptoms when seeing your GP:
- List your concerns before the appointment. This will ensure that you remember everything you want to say and talk about with your GP.
- Provide as much information as you can about the history of your symptoms. Make a note of when your symptoms first occurred and how frequent they are. Have they worsened over time or stayed the same?
- Download Ovarian cancer Action's symptom diary and use it as a tool to help you communicate clearly with the doctor about the symptoms you are worried about and that may suggest ovarian cancer.
- You should also mention if there have been two or more cases of ovarian or breast cancer in your close family
- If you feel that your GP is not taking your concerns seriously, ask for a second opinion from another doctor.
- Do return to your GP if your symptoms persist
marsedotes: My mum wasn't diagnosed for eight months and wasn't taken seriously when discussing her symptoms. I know that most doctors are clued up and that she was unlucky with her one, but has more training been given to doctors since 1995 when she was misdiagnosed? I have since seen more literature in my surgery, so am hoping so.
Dr Sarah Blacklidge: We believe that there has been encouraging progress in raising awareness of ovarian cancer and its symptoms among women and healthcare professionals, but also that there is much work still to do. In 2009, the Department of Health published Key Messages on Ovarian cancer for Healthcare Professionals, which was one of the first documents to highlight the symptoms associated with the disease. Since then, Ovarian Cancer Action has promoted this information amongst GPs, for example by sending the guidance to every GP surgery across the UK.
The National Institute for Health and Clinical Excellence (NICE) has also recently published draft guidance on the recognition and initial management of ovarian cancer. Ovarian cancer Action will promote this guidance when the final version is released in April 2011.
We believe it is very important that GPs are receptive to patients' worries and concerns. If you are ever concerned that you may be experiencing any of the symptoms associated with ovarian cancer, talk to your doctor, who should investigate and reassure you as appropriate.
rayotlou2: Can you detect ovarian cancer in a urine sample?
Dr Sarah Blacklidge: Although many quick methods of testing for ovarian cancer are being developed, the most reliable is still a blood test to check serum CA125. It is not 100% reliable, especially in pre-menopausal women, although put in the context of discussion of symptoms, examination and (if necessary) trans-vaginal ultrasound, it is a useful clinical tool. Urine testing for ovarian cancer is not routine and is not currently recommended.
marsedotes: Why is bleeding never mentioned as a possible symptom to look out for? My mum had bleeding and, although she was diagnosed with ovarian cancer, she was told the cancer had started in her fallopian tube. Is it rare for bleeding to occur?
Dr Sarah Blagden: Bleeding is not a common symptom for the majority of patients who develop ovarian cancer. There is a subtype of ovarian/fallopian tube cancer (endometrioid) that can present with bleeding and some patients develop irregular menstrual cycles with ovarian cancer.
It is more likely that bleeding is a warning sign of cervical or endometrial cancer. However, if tests have excluded these as a cause of bleeding, it is important that doctors go on to consider ovarian cancer, just in case.
Mumbar: Can a pelvic exam or an ultrasound detect ovarian cancer? What are the main symptoms and what other symptoms are there to look out for, and can it be ovarian cancer without these symptoms? When I had a pelvic exam, it felt bruised when my GP pushed externally while examining internally - I have been referred to hospital for an ultrasound.
Dr Sarah Blacklidge: Any of the following three symptoms, if they occur on most days, can suggest ovarian cancer:
- Persistent pelvic and abdominal pain
- Increased abdominal size/persistent bloating - not bloating that comes and goes
- Difficulty eating and feeling full quickly
Occasionally other symptoms such as urinary symptoms, changes in bowel habit, extreme fatigue or back pain may also be experienced, on their own or at the same time as those listed above. Again, it is most likely that these symptoms are not caused by ovarian cancer, but may be present in some women with the disease. Infrequently, women have been diagnosed without having experienced any of the symptoms listed above.
A pelvic exam can detect masses caused by ovarian cancer; however a normal pelvic exam does not exclude the possibility of ovarian cancer. For this reason it is important that your GP refers you for the recommended investigations for detecting ovarian cancer, which are a CA125 blood test and a Trans Vaginal Ultrasound Scan (TVU).
MrsTittleMouse: I sometimes get irritable bowel syndrome at times of stress, and I'm worried that this would make it hard to diagnose ovarian cancer (if I ever got it). What are the differences between IBS and ovarian cancer in terms of symptoms?
Dr Sarah Blacklidge: The main difference between IBS and ovarian cancer is the persistency of the symptoms. Ovarian cancer symptoms tend to be present on most days, be persistent, and worsen as time goes on.
IBS symptoms tend to relapse and often are considered to be a lifelong condition. Symptoms include abdominal pain or discomfort, constipation or diarrhoea, and abdominal bloating. IBS tends to reoccur, or is considered to be an occasional nuisance. Many find that symptoms occur during times of stress or menstruation, and some foods can also make it worse.
Listen to your body. If you suffer from IBS, you will know what triggers a flare-up of your symptoms. If symptoms persist or worsen, speak to your GP. In most cases, it will be related to the underlying problem of IBS but it is important to have the symptoms checked out.
If you are unsure about the frequency of your symptoms, use the symptom diary as a tool to help you communicate clearly with the doctor about the symptoms you are worried about.
strandedatsea: Can ovarian cysts be indicators that you may get ovarian cancer, even if the cyst itself is benign?
Prof Hani Gabra: Non-cancerous (benign) ovarian cysts are quite common and much research has been undertaken considering possible links between cysts and ovarian cancer. Research indicates that there is no increased risk of ovarian cancer associated with a history of benign ovarian cysts.
imblet: I understand that the use of fertility drugs increases the risk of ovarian cancer. Is this right, and is it possible to say by how much? I used one for about two years and there is no ovarian cancer in the family.
Dr Sarah Blagden and Prof Hani Gabra: Last year, data from a study conducted in the UK of 7,355 women was published, half of whom had received ovarian stimulatory drugs. There was no association with ovarian cancer found. This means you are not likely to have a higher than average population risk of developing ovarian cancer per se from using fertility drugs. However, infertility itself is associated with a slightly increased risk of ovarian cancer. The reasons for that are not currently known.
PumpkinBrain: If you have had benign ovarian cysts (multiple and large) and CNIII tissue detected with smears, are you likely to be at more risk of developing ovarian cancer?
Dr Sarah Blagden and Prof Hani Gabra: From the information you have provided, you are not at increased risk for ovarian cancer. However it sounds as if you should have close gynaecological surveillance anyway. We suggest that you discuss this with your GP.
Heartsease: Sadly, I just learned of a very premature death from ovarian cancer this morning. I echo the need for people to take younger women seriously - my dermoid cyst was not discovered until it was 10cm because my GP did not do a pelvic exam until six months after I first complained of pain and bloating (at the age of 23).
I'd also like detail on any relationship with cysts, but specifically dermoid cysts. Do dermoids indicate that you are any more likely to develop ovarian cancer? Also, does losing one ovary affect your ovarian cancer risk with respect to the other?
Dr Sarah Blagden and Prof Hani Gabra: If you have had ovarian cancer in one ovary, then your risk of developing it in the other is increased. Benign disease in one ovary would not increase your risk of developing ovarian cancer in the opposite ovary. Although having a dermoid cyst in one ovary does not increase your risk of epithelial ovarian cancer, they can very rarely develop into cancer. This is why most doctors would advise removing them.
4andnotout: My mum had a full hysterectomy at the age of 24 as she had ovarian cancer, cancer of the womb and of the cervix. I know I have cysts on both of my ovaries and have polycystic ovary syndrom. Am I at higher risk of ovarian cancer and is there a way of detecting it early?
Prof Hani Gabra: Research has been undertaken to see if other gynaecological problems increase the risk of ovarian cancer. Polycystic ovary syndrome (PCOS) has not been proven to increase a woman's risk of developing ovarian cancer.
However, with your mother developing ovarian, endometrial and cervical cancer at 24 years of age, it is worth you talking to your GP about family risk for ovarian cancer and possible referral to see a geneticist. The first step would be to take a family history to decide whether your risk would be high enough potentially to see a geneticist.
Littlefish: Is there any link between breast cancer and germ cell cancer? If someone has been treated for germ cell cancer and has been told that the toccurrence of germ cell cancer?
Prof Hani Gabra: Germ cell cancers are often cured completely. They are a family of different kinds of cancer and although most of them are cured there are some differences in outcome between the types of germ-cell cancers. There is no link between germ-cell cancers and breast cancer. Depending on the features of the tumour, the individual may initially be followed for up to five years.
jonicomelately: I've never been on the Pill but have been pregnant twice and breastfed both babies for nine and six months. Am I at a higher risk of ovarian cancer?
Dr Sarah Blacklidge: Pregnancy will actually help reduce your risk of developing ovarian cancer. The risk of ovarian cancer decreases with the more children you have. In some studies breastfeeding has been shown to reduce the risk of developing ovarian cancer. However, other studies have not shown this link, so further research is required.
PanicMode: I have had ovarian cysts in my last two pregnancies - I was bluelighted to hospital having collapsed with pain relating to them, and spent a week in hospital. At a postnatal scan after my third I was told I have PCOS, even though I have never had any symptoms and conceived all four of my children immensely easily.
My grandmother died of ovarian cancer; my mother had 'suspicious growths' on her ovaries and had them removed; my aunt died of breast cancer, and since having my fourth child my periods have been horrendously heavy. Does this history make ovarian cancer inevitable and would any doctor remove my ovaries as a preventative measure? What would the health implications of this be?
Dr Sarah Blagden: Ovarian cancer is not 'inevitable', but you should definitely ask your GP to refer you for genetic assessment as to whether you carry the genes that predispose you to breast/ovarian cancer. Whether oophorectomy (removal of the ovaries, leaving intact the womb and fallopian tubes) is recommended depends very much on the results of this. As a separate issue, I would also ask your GP for a referral to a gynaecologist, as the profuse bleeding may well be an entirely separate issue, but something you should have investigated.
thisiswhataluv: I have had pain on the right hand side of my groin area for about 10 days now. My periods have always been irregular, but these days they can be up to nine weeks apart. My earliest appointment with my doctor is in a few days, but I got into such a state at the start of the week that I rang NHS Direct and went to my walk-in centre. The nurse didn't find anything, but asked if I had back and leg pain, to which I answered no. But now my left thigh is hurting, despite my groin pain being on the right. I think i might have a cyst, but how are the symptoms different to ovarian cancer? I'm 27, have three children, no trouble conceiving and normal smears.
Dr Sarah Blagden: This does not sound like a classic presentation of ovarian cancer, but nevertheless you need to get your symptoms investigated as soon as possible. Hopefully, your GP will arrange tests to exclude infection and refer you to a gynaecologist. Ensure that they have ruled out ovarian cancer, but the sudden onset of your symptoms (and your age) make this less likely than a benign cause.
teatea: I currently have one small dermoid cyst on each ovary. These are recurring cysts as I've already had two operations for removal of benign dermoid cysts. Is there a blood test to see if there is a genetic link to ovarian cancer? Despite my history of operations I still couldn't get a scan to check state of ovaries after successful IVF pregnancy.
Dr Sarah Blagden: There is no genetic link between having dermoid cysts and ovarian cancer. Recurrent dermoid cysts are quite common so make sure your have regular check-ups with a gynaecologist. Ask your GP to refer you, if you do not have one already.
giddly: My mother had ovarian cancer when she was 45 - I am 46 now. No other member on that side of my family has had it (although my first cousin on my father's side died of it, also at 45). I'm aware there's a hereditary element to it, but from looking at various websites it would seem you're not really at increased risk unless two close relatives from the same side of the family have contracted it. Is this right? I suppose I'm a bit concerned as there are a lot of 'unknowns' in our family - lot of my grandmother's generation died relatively early but I have no idea what from. Would it be wise for me to get screening, and if so how accurate is it?
Dr Sarah Blagden: It would be worthwhile you speaking to your GP to ask if you could be referred to a genetic counsellor. Genetic testing is not widely available, and families must meet strict criteria to be eligible for genetic screening. As you have little information from your grandmother's generation it may present some difficulties. If would help if you have information on whether any of the causes of death within your grandmother's generation were as a result of breast or prostate cancer.
Currently, there is no annual screening programme in the UK. There are two trials ongoing in the UK, a screening trial for all women, UKCTOCS, and a familial screening trial, UKFOCCS, which have both closed to recruitment. However, if the geneticist decides that your risk is high enough, you would be under regular surveillance by them depending on the results of the genetic test results. If you are not found to be a carrier of either the BRCA1 or BRCA2 breast and ovarian cancer genes, then no screening would be instituted.
Mermaidspam: I am the only remaining female member of my family who has not had ovarian cancer (or an early hysterectomy to prevent the occurrence of it). I am now 30 and have been told that I will not be screened until age 35.
My question is, at what age should I be thinking about having my ovaries removed? I do want to leave the possibility of another child as open as possible, but do not want to take the risk of ovarian cancer.
Dr Sarah Blagden: You should consider speaking to your GP about a referral to a geneticist. You would first of all speak to a genetics counsellor, who would go through some of the complex issues about genetic testing and how they might affect your decision. If you are eligible for genetic screening, and are found to be at a genetic risk of developing the disease, even if you are under the age of 35, they will keep you under surveillance. Depending on the results of genetic tests, an oophorectomy (removal of the ovaries, and leave intact the womb and fallopian tubes) may be recommended once you have completed your family.
cakeywakey: I'd like to ask about the hereditary risk of ovarian cancer. My grandmother died of the disease and there are also cases of breast cancer on that side of the family. Is there a risk and if yes, is there anything that can be done to mitigate it?
Dr Sarah Blagden: From the information you have supplied, we cannot determine whether you are at 'high risk' of developing ovarian cancer compared to the general population, and you should discuss this with your GP. However it is good that you are aware of the disease. If you are at 'low risk' ie similar risk of developing the disease as the average population, there are no major risk reducing measures required, but be aware that the average age of onset of the disease is around 60 years of age. If you ever have symptoms of persistent abdominal bloating (not bloating that comes and goes), persistent pelvic and stomach pain, difficulty eating and feeling full quickly, then make sure your GP has considered ovarian cancer when finding an underlying cause.
Medee: Both my grandmothers, maternal and paternal, died of this as their primary cancer. Does the fact that both my grandmothers had it make it more or less hereditary. My mum had a full hysterectomy several years ago (not related to her ovaries). I spent 10 years on the Pill (came off a year ago and now pregnant) - how much will that have mitigated any hereditary risk?
Prof Hani Gabra: Genetic risk is increased if two first-degree relatives at a younger age develop either breast or ovarian cancer. (First-degree relatives are your mother, sister or daughter.) Your GP should make a decision on a more detailed family history and decide whether you have features of significance in your family. If so the GP should refer you to a geneticist.
Use of the oral contraceptive pill will help reduce the risk of developing ovarian cancer. Research has shown that the use of the contraceptive pill for five years or longer is protective against ovarian cancer for up to 20 years following discontinuation of the Pill. There is a 40-50% reduction of risk for ovarian cancer.
Strangewaysherewecome: Ovarian cancer worries me due to the lack of symptoms. While I know it is fairly rare in the general population, I wonder if I am at an increased hereditary risk. My paternal grandmother was one of four sisters, all who died/suffered from either colon, breast and uterine cancer. One of my father's cousins died from ovarian cancer at the age of 40, and a number of his other cousins have had colon cancer. My father is currently having tests for colon problems.
The suspected genetic connection is something called HNPCC (hereditary non-polyposis colon cancer). Is this gene also connected with ovarian cancer and other female cancers? Is there any screening available for ovarian cancer as it is the lack of symptoms that worries me. Obviously, as my father is male he won't be at risk from female cancers and he is an only child.
Prof Hani Gabra: The HNPCC genetic syndrome called the lynch type II syndrome does carry risk of bowel, uterine, ovarian, stomach, kidney cancer and, less so, breast cancer. The more common tumours in this syndrome are uterine, colonic and stomach.
Genetic counselling and genetic testing are offered to people who meet conditions called the Amsterdam Criteria. Screening is undertaken with colonoscopy screening for bowel cancer, and ultrasound screening for uterine and ovarian cancer. Sometimes endoscopies (stomach examination with the endoscope) and hysterscopies (direct examination of the womb) are also considered.
We suggest that you discuss your family's history of cancer with your GP, so they can decide whether you should be referred to a geneticist.
Pavlovthecat: Is it true that options for treating this aggressive cancer are reduced once you reach the age of 60 to 65? I'm asking because my mother was refused the chance of a hysterectomy despite this being the usual and immediate course of action, while another person she knew, diagnosed at the same time, with similar grading and spreading into other areas was offered an immediate operation before chemotherapy. Research i have read suggests that treatment might be age specific.
Prof Hani Gabra: Age is not a criterion for treating patients differently in general. As long as a patient is sufficiently fit for operation and for chemotherapy then standard treatment should be given. However, in older people there can be other diseases that prevent complete treatment from being delivered, for instance heart or lung disease, and under these circumstances the treatment is tailored to the patient's fitness. Some patients may not be well enough for an operation or for strong chemotherapy.
For further information about symptoms of and testing for ovarian cancer, please view our website at www.ovarian.org.uk. Ovarian Cancer Action also produces a symptoms leaflet, and a leaflet on hereditary ovarian cancer, both of which are available by calling 0300 456 4700 or by emailing firstname.lastname@example.org