Until there's a test, awareness is best

Whilst there are still difficulties developing a definitive test for ovarian cancer, the Helene Harris Memorial Trust is dedicated to giving women positive healthcare messages about the risks and symptoms of the disease, so they can evaluate their own risk and highlight information to their GP.

Awareness lectures are a fascinating opportunity to  

• Discover amazing facts about these tiny organs, hidden deep in the abdomen.
• Find out who is most at risk of developing the disease.
• Learn how you can reduce your risk.
• Understand the symptoms and difficulties in diagnosis.
• Ask the experts your own questions on areas such as HRT and genetics.

Lectures can be tailored for a medical, or non medical audience, using a range of specialist speakers including gynaecologic oncologists and geneticists. At one of our largest lectures to date, Professor Ian Jacobs, the principal investigator of the UK Collaborative Trial of Ovarian Cancer Screening (www.ukctocs.org.uk) spoke about the risk of contracting ovarian cancer. He and others from the panel answered questions from the audience of over 300 people.Click here to see a summary of the questions to the experts.

Questions to the Experts

Members of the public submitted questions to Gynaecological Oncologist Professor Ian Jacobs, Consultant Gynaecologist Professor Albert Singer, Geneticist Dr Susan Shanley and GP Dr Garry Savin:

If one has a predisposition to polyps will that increase their risk of getting ovarian cancer?

Findings to date do not point to polyps being related to ovarian cancer. However, polyps in the bowel are a precursor to bowel cancer.

Benign ovarian cysts do not increase the likelihood of ovarian cancer; in fact it would make finding ovarian cancer easier if the two were related. They are a separate abnormality.

My Mother in Law died of ovarian cancer and my aunt died of breast cancer. What are the risks of breast and ovarian cancer for my daughters?

To clarify their risk in terms of likelihood compared to the rest of the population, you do not add together the risk from two sides of the family. Geneticists look at the two sides of the family separately when assessing risk; it would only be different if the two families were perhaps cousins.

Is the only risk to someone in “the low risk group” of routine screening, the chance of getting a false positive result?

People have died as a result of operations due to having had false positive results. The incidence of ovarian cancer is quite low. Additionally, there is a chance you could give people false reassurance, as the screening tests are not 100% sensitive. Some people find screening tests an unpleasant experience, it can be quite stressful. It costs a considerable amount of money to screen the whole population and it could take money away from other health care interventions that may be more needed. The advantages for screening must outweigh the disadvantages before screening the whole female population takes place.

What is the genetic factor that makes Ashkenazi Jews predisposed to ovarian cancer?

Among Ashkenazi Jews there is an increased frequency of mutation. There are three mutations. The BRCA1 gene has two mutations and the BRCA2 gene has one mutation. 1 in 40 Ashkenazi Jews have an increased risk of having inherited the mutation for breast and ovarian cancer. Concentrations of mutations have been seen in history or in isolated populations. The reasons for the mutation are unknown; perhaps it performs some function. One individual could have been responsible for the mutation as far back as 6th Century BC. When you have a geographical or cultural concentration of a population these sorts of mutations can occur, such as those seen in the Finnish population.

I have BRCA1, 185 mutation. I had cancer 10 years ago and another cancer a year ago, I am 39 years old and have had an oepherectomy. I have two children aged 3 and 19 months. At what stage should I be concerned for them?

If you carry the mutation, the chance of passing it on to a male or female child is 50%. At a young age your children are not at any increased risk. We like individuals to decide for themselves if they want to be tested, offspring should discuss this for themselves. Some people find it overwhelming to cope with the information. There is no reason to do any tests before the age of 18. At 18, an annual clinical and breast check should be done. Recommended ages for screening of those with BRCA mutations are:

Age 18 - clinical and breast check.
Age 35 - Mammography for female
Age 40 - Prostate check for male

BRCA1 and 2 can increase risk of breast and ovarian cancer. There is a slight increase of incidence in prostate cancer.

Male offspring with BRCA1 genes have an increase from the general population of 2% to 6% of having prostate cancer. Which is still only a small risk.

Those with the BRCA2 genes have an increase from the general population from 2% to 14%. Prostate cancer can occur earlier in these families with BRCA mutation than in the general population. We can offer screening from age 45, this is a controversial area, not recommend just offer.

I have had ovarian cancer for 3 years, are my daughters entitled to have the screening test?

Geneticist response: If you were coming to my clinic, I would find out if there has only been a single case of ovarian cancer in your family. How old you were at the time of your ovarian cancer? Is there Askenazi ancestry? Is there any breast cancer in your family? If the answer is “No” to the last two questions, you generally not likely to carry the gene and therefore not eligible for screening or genetic testing.

What is the cost of doing a CA125 antigen blood test privately?

The cost of this test is £50 to £100 depending on where you get the test done.

If the CA125 level is over 30 should you be worried?

30 is regarded as the standard cut off for ovarian cancer, but CA125 is not only produced in ovarian cancer. It is present at high levels in the lining of the womb or abdomen during menstruation, pregnancy and in those with endometriosis. It can be raised when there is heart, kidney or liver failure. It is always raised when there is asites, (fluid in the abdomen) which occurs particularly in liver or heart failure.

The most important thing is to look at the pattern of CA125 over time. If it is flat or falling over time it is rarely due to cancer. If it is rising then it is more likely due to cancer. The absolute level is of less importance.

What would a GP say if a patient asked for CA125? Is it advisable?

Most GP’s think the CA125 test is not advisable on its own. (It is a test that needs to be done yearly) A GP has only 7 minutes with a patient and would need more time to go into the family history. People who think they are intermediate or high risk should go to a genetic counsellor, although a GP would not recommend this to the average person.

How are people referred to a genetic counsellor?

Patients who are concerned should talk to their GP, who will refer you to one of the 30 genetic centres around the country. Contact details are available on the web at www.bshg.org.uk. There are also referral guidelines available for GP’s.

Would hormones taken for IVF or to stimulate ovulation put women into the intermediate risk group?

IVF automatically includes some form of ovarian stimulation. One of the questions we have asked ourselves, in the last 30 years is that there have been thousands of women who have taken drugs for fertility reasons, so are we going to see an epidemic of ovarian cancer?

In 1992 a distinguished epidemiologist put together eleven studies which had been done for reasons other than ovarian cancer, from the figures that were available she found that those who did not get pregnant were at a 27 fold increased risk of ovarian cancer. The study was heavily criticized, not least by the drug companies. No one has really answered this question. The bottom line, I think is there is probably an increased risk, similar to that of a weak family history, from having had ovarian stimulation. Particularly if these women have not had a pregnancy afterwards. If they have had a pregnancy this probably largely eliminates that risk, but it is probably within the medium risk group.

I was under the impression that taking the pill regulates ovulation and does not inhibit ovulation. Which is true?

By taking the oral contraceptive you block ovulation, you regulate your periods artificially. It is for this reason that the pill is seen as a prevention for ovarian cancer. Even if you took the pill from age 20-25 you still carry that reduced risk all the way through your life. Why the pill decreases the risk of ovarian cancer is a lot more complex than just inhibiting ovulation. This is a fascinating area of research. Probably the pill and pregnancy reduce risk by decreasing genetic abnormalities that happen at ovulation, but in addition there is something else going on that wipes out the genetic changes that have already occurred. The pill may increase the risk of breast cancer. If women in the high-risk group think they will have their ovaries removed later, once they have completed their family, then it would be best not to take the pill. It is worth remembering that for BRCA carriers it is an individual choice as to what contraceptive they take. In fact BRCA carriers can take the oral contraceptive when they are younger. The risk factors for BRCA carriers do not normally take off until thirty for a BRCA1 mutation and forty for a BRCA2 mutation.

What are the pluses and minuses of the effects of HRT for someone in the intermediate risk group?

The ovary is not an estrogen responsive one, the ovary produces estrogen. In contrast the breast responds to estrogen. So we went for a long time thinking that HRT did not increase risk for ovarian cancer. Unfortunately there is a little bit of evidence that HRT may very slightly increase the risk of ovarian cancer. It is not totally conclusive but there is some evidence. Certainly HRT does increase the risk of breast cancer. The precise level is seen by comparing 40 out of 100,000 in the general female population will get breast cancer to 42 out of 100,000 for those who have taken some form of HRT. Like everything there are advantages and disadvantages and these must be weighed up. For the high-risk group we just don’t have the data to compare HRT against not taking HRT. At the moment, I do not think being in the high-risk group should stop someone taking HRT. The data on BRCA carriers is still coming in, the definitive answer is yet to come but we will need to look at many things, such as number of pregnancies, HRT, pill users and diet.

Is there a point of GP’s looking out for ovarian cancer, wouldn’t it be helpful if they could offer CA125 testing?

At this stage I would not like to see GP’s offering the CA125 test, more work needs to be done. A lot of women who have ovarian cancer are very very angry, particularly with their GP’s. Most GP’s will only see two or three cases during their careers. However they will see thousands of women with abdominal discomfort. We would love to get GP’s in a position where they can diagnose earlier, but with symptoms such as indigestion and weight gain you can see why this is so difficult. Irritable bowel symptom is present in 40% of the population. Virtually every symptom possible is a symptom of some sort of cancer.