Why No National Screening Programme?

Ovarian Cancer is the FOURTH most common cancer in women. However It kills more woman each year than cervical cancer. Ovarian cancer is not usually detected until advanced but cervical cancer is. It is because of the for the lack of screening that results in late diagnosis of OC and here is a la lack of awareness with 80% of woman not able to name the symptoms. The risk of developing OC increases over 50 and ALL woman reporting one or more symptoms, on a regular basis, are supposed to be referred for a CA125 blood test. As the CA 125 blood test is not always indicative I suspect this test is underutilised. I was not offered the test until in hospital for Massive Ascites where I eventually got my diagnosis. the CA125 Blood test was done at the end of my stay in hospital and was over 3k in numbers. NICE guidelines state woman who have IBS over 50 are unlikely to have new IBS for the first time yet the question my GP asked is 'did I have a change in bowel habit or had my bowel habits got worse' as I had reported ongoing IBS. I answeered the doctor's question honestly 'No, my problam is ongoing and is always 'diarrhoeaa, diarrhoeaa' Has anyone else any thoughts on what we can do to lobby for a screening programme?

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  • We are sorry to hear that you have been diagnosed with ovarian cancer and that it took such a long time to be diagnosed. You are right that NICE does state that anyone with symptoms of ovarian cancer should be offered a Ca125 test but we aware that this doesn't always happen. It is unusual for someone over the age of 50 to be suddenly diagnosed with IBS if they haven't had it before.

    To address the subject of screening - we do not yet know whether screening for either those in the general public over the age of 50, or for those who are at high risk of developing the disease because of their family history, makes a difference. It is important to make sure that screening will actually make a positive difference before it is introduced. A large scale trial of 200,000 post menopausal women across the UK has been conducted and the results should be out at the end of this year or beginning of next to answer these questions. If the results are positive it will hopefully lead to an introduction of a screening programme. It is important that there are no significant adverse problems as a result of the screening eg if something is found on a scan this would lead to an operation to find out what the problem is and all operations carry a risk.

    At about the same time results of a trial with those who are at high risk of the disease are expected.

    As regards cervical cancer. We do know that cervical cancer has a precancerous stage in its development which is what is looked for when someone has a smear. Cell changes that occur which may, if left become the beginnings of cancer and there is quite a long gap between these first occurring and the development of cancer. It is not known that ovarian cancer has this precancerous stage.

    I hope this will answer some of the questions but if you like to discuss it further do please give us a ring at Ovacome 002072996650

    The Ovacome Team

  • Do you the numbers of women over 50 who develop ovarian cancer per 1000 of population in UK.

  • I have been working on the figures that cancer research uk show on their website and it works out at around 59 per 1000 over the age of 50. Hope that is the information you are looking for

    Ruth

  • So women over 50 have a 6% chance of developing OC that to me is high yet the perception amongst health professionals is that its rare (my surgeon for one said its rare when I was agonising that several GP's had not picked up on my symptoms it was not until I was admitted to hospital in agony with over 11 litres of fluid in my abdomen which also got into my lungs so is classed as stage 4)

  • We tend to say that ovarian cancer is uncommon rather than rare.

    The Ovacome Team

  • Very interesting that they don't know whether there is a pre cancerous stage in ovarian cancer. I was told in the march that their was nothing gynaecologically wrong and exactly 3 months later am found to have ovarian cancer stage 3b. Surely there has to be a starting point and it doesn't just come on at an advanced stage? Ann

  • Had they done scans or just said that from the CA125?

  • I had a Transvaginal USS in Feb 13. My CA125 wasn't done until May 13 when I saw cons privately. He also carried out scan and was able to show me the tumour on ovary. The first Dr in Feb was only an F2 (2nd yr out of med school). Mid diagnosis is very common with this disease. Ann

  • Hi I attended a fascinating and hopeful conference earlier this year. One of the speakers was prof Ian Jacobs and he is involved with collating the results of a massive study which may lead to a screening program when the results are analysed. You can hear it here targetovariancancer.org.uk/...‘ask-experts’-podcast-status-ovarian-cancer-screening

    audioboo.fm/boos/2358875-as...

    Sxxx

  • Until screening widely available, the buck remains with GPs who must raise their game. All too often IBS is diagnosed without further investigation as it was in my case, then stomach infection, again without further investigation. Also we ourselves must take some responsibility for our health and look at our genetic history. My mother had breast cancer, my father Prostate, but I had no idea of the link to ovarian cancer. I will for sure make certain that my two girls are tested as soon as possible, as I would notwish them to have to endure the surgery and treatment connected tothis foul disease.

    As a side issue, my husband had a heart by pass five years ago. The symptons were very slight with just a little indigestion, tests at the hospital proved negative,however when the doctor read up on my husbands family history and saw that his mother died from heart disease and his elder brother had a bypass he decided to do further tests which revealed severly blocked arteries. So the Doctor who went the extra mile , saved his

    life.Food for thought?? But clearly highlights the importance of flagging up genetic history.

  • I am adopted and have no genetic history to go on, add to this there are no medical notes before I am 5 as they were lost when the family GP retired at that time. Can't see how flagging works for me.

  • Hi Normally if in doubt we ask for a CA125 blood test which is fool proof.

    Best wishes for you.

    Jackie

  • Further to your comment re the Ca125 blood test it is not fool proof as ithe levels can be raised in other conditions apart from ovarian cancer such as endometriosis pregnancy and other conditions. The screening trial that will be reporting at the end of 2014/2015 will clarify the role of Ca125 in detecting ovarian cancer.

    The Ovacome Team

  • The screening program is likely only to be offered to those most at risk of developing ovarian cancer eg those with a family history. Also the research is showing that it is pointless just taking a one off CA125 test because as you say this can be misleading but it is the trend in CA125 results that is important.

    NICE guidelines already say if a woman 50 or over presents with the symptoms of ovarian cancer she should be offered a CA125 test this is why better education for GPs is important. I wish they would replace the 50 with any woman I was 40 when I went to see my GP.

    The reason why most women get diagnosed at Stage 3 or 4 is because this is when the symptoms become more noticeable. Earlier stages are often symptom free and the CA125 test doesn't always work in the earlier stages.

  • Yes I am aware of that but should the Ca125 be raised, it means cancer investigations are a must.My info is from top oncologist gynae man.

    Jackie

  • Just to say regarding GP: I went to mine a few weeks ago to report IBS-type symptoms and prolonged periods and was offered a CA125 10 minutes into the consultation (I am 50 with no history of IBS). The next day she also confirmed pelvic mass and I was referred to gynae onc right away, by which time the CA125 results were back - 198. So I have to say, my GP's instincts and training were spot on. The NICE guidelines from 2011/2(?) were followed to the letter in my case, and while I may be one of the lucky ones, the NHS has been brilliant so far. Now awaiting the op.

    However re screening programme, there isn't currently any measure that can accurately identify women with early stage ovarian cancer so there is more work to be done first to see if other tumour markers or combinations of same could do the trick - that's my understanding anyway from having googled so much I thought I might break the internet!

  • Hi Sonnetgirl- the podcast I've linked above explains that trial results using an algorithm on changes in Ca125 and ultra-sound scan seem very likely to be way forward. I really do recommend a listen to it, Sx

  • Thanks Sunfleury, that is interesting to listen to. Nice to hear some enthusiastic and upbeat possibilities in the pipeline. It will be very interesting indeed when the final analysis has been done and they can publish the estimations of lives saved as a result. Thanks for flagging again.

  • I'm glad there are some good GPs out there who know to suspect OC and do th e right tests. Mine told me I had a virus for about 8 weeks until I saw a different GP in the same practice and was admitted as an emergency - over 8 litres of fluid were drained and my CA125 was over 9000. That was in December 2010. I had few female family members but not everyone has a family history anyway. Educating GPs seems to ba a priority. Not much point women knowing the symptoms if we are fobbed off when we get to the GP.

  • I understand that the CA 125 is not a reliable tool in the diagnosis of recurrences. I have had false negatives. For me it is only reliable when on treatment as it monitors the ups and downs and at the moment it is down, Will have ct scan in early October and have ca 125s every three weeks as on Avastin

  • As the Ovacome Team mentioned, there are two trials whose results are being analysed. I'm in the UKFOCSS trial (not the one in the podcast, but the one for people at raised risk due to my own and my family history), where we had 4 monthly CA125 tests and annual ultrasound.

    There were some additional blood tests in the early months while the formula tried to establish my "normal". It isn't at all straight forward as many factors can result in a raised CA125 from the individual norm, triggering extra bloodtests and I also had to have a repeat ultrasound because the sonographer couldn't get a decent image of one ovary at one point. The trial aims to see if the ultrasound and CA125 combination can pick up ovarian cancer at an early stage and also whether doing so makes a difference to survival - in other words whether it finds it early enough to make a difference. There was also a psychological arm, looking at whether screening (including all the recalls for additional testing) was causing anxiety or giving reassurance.

    I'm looking forward to hearing the results of both trials. Until then (and afterwards if screening isn't shown to be effective) my strategy is agreed with my GP. If I have any of the symptoms which might indicate ovarian cancer we will go for an immediate referral back to my screening hospital rather than a wait and see/eliminate other possibilities approach or referral to my local hospital, and we've had a discussion on what these symptoms are.

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