symptoms

Hi Everyone,

Does anyone feel if they had gone to there G.P without symptoms maybe weeks or months before their diagnoses and had the C125 test

that the ovarian cancer may have been there all along, and that we could have been able to catch it at its earliest stage i.e 1, the reason why we get the symptoms in ther first place is because it has grown into what ever stage and we then get discomfort.

sarah23

13 Replies

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  • Hi Sarah

    I know that you know this, but CA125 can be raised for lots of other reasons . So a positive result can be a false positive and can result in lots of upset and stress for people. Also some poeple have lowish CA125s, I had a 16 cm borderline tumour and a CA125 of only 69 , which fell to 48 a few weeks later, before the operation.

    Also I have just had personal experience of a false positive . A mammogram showed something that required a second look . Everybody said that this would probably only be a few images, but I had a horribly painful cone biopsy taken and a terrifying wait for results, which thankfully were OK. This is not a patch on the suffering a breast CA patient would have, but it was awful nevertheless.

    Statistically , for rare conditions , there will be lots and lots of false positives. Also these tests are not cheap and the money has to come from somewhere.

    Love

    Charlie xxx

  • Treatment for cancer is also very expensive and the CA125 often indicates that something needs investigating in the pelvic area even if its not cancer e.g. endometrioisis it still needs dealing with.

    500 more women die in the UK of ovarian cancer when compared with the rest of Europe probably because of late diagnosis.

    I think Sarah raises a valid point.

  • I have to agree. Had a ca125 test been taken by my gp (despite no symptoms at all pointing to pelvic problems) my stage 3c, grade 3 cancer might have been picked up 4 months earlier for the sake of a £20 blood test. Of course, I'd still have needed the full surgery and chemo, but my statistical chance of a recurrence might well have been much less.

    I think any problem in the pelvic area for any woman who may be nearing menopause should trigger the test as part of a jigsaw of diagnosis.

    Isadora.

  • Statistics do not help predict an individual's chances Isadora! "only 41% get to 5 years" does not mean your chances of being in that 41% is any less than the next person's! It is only useful in helping to distribute resources Not in predicting individual fates! Personally I'm a "cup almost half full" kind of gal and assume I am going to be in that 41%! if not so be it but I am not wasting precious time on the stats. They cannot predict my fate and 41% is better than my chance of winning the lottery! Which, incidentally, I do not do!

    Margaret

  • Yes, my point (not well made) was that if the cancer had been diagnosed at an earlier stage, I might have been less likely to need further treatment (statistically), so saving far more than the £20 the test cost.

    I totally agree about statistics and knowing how unscientifically most are collected; i would argue vigorously against their being a useful indicator of how resources should be used.

    I.

  • Me too! As far as I am concerned if 1 person benefits it is worth it because for them the value is 100%! it is why I resist private health insurance as I do not want an actuary or an accountant deciding whether my treatment would be cost effective. Private companies are only interested in the value to shareholders Which is not the same as the value to patients. NHS may need to ration resources but at least doctors get to make the decisions, or I hope they do! These days one cannot even be sure of that!

    M

  • I agree with ScardyCat. The stats for the UK are worse than other countries in Europe and resources should be given to finding out why. I've also heard it's because we aren't offered tests in the UK. I'm aware the NHS is stretched for cash but they might at least offer us a chance to pay part or fully for tests. I know what I'd choose - a levy of £20 per annum or Advanced and Incurable Ovarian Cancer.

    Let's start a lobby.

    Annie

  • Hi Sarah,

    I do partly agree with you. In my case I had urine problems for 18 months prior to being sent for tests by my GP. I had been to see a physiotherapist regarding doing pelvic floor exercises and had mentioned to her I was having pain during intercourse (two of the symptoms). However it wasn't picked up by her or the GP I saw at the time. If I had had a ca 125 test at that point then maybe it would have been picked up earlier. Also I should have been aware of the symptoms of ovarian cancer so could have done something myself - a regret I will have to live with for the rest of my life.

    I don't think having the test done routinely without any symptoms would work as people's ca 125 does vary and some people's levels don't change with the disease. What I feel is that more people should be made aware of the symptoms and what to look for. If you think about breast cancer everyone knows what to look for. Then if you have any symptoms then a test should be done at that point - I bet if most people look back we all had one of the symptoms a long while ago but dismissed it as part of being a woman.

    I also feel people should look after themselves better and eat more healthily and exercise more then maybe we wouldn't be so likely to get cancer and other serious illnesses. I am very overweight and know that was a contributory factor in my cancer (another thing I will never forgive myself for). I am dealing with it now and have lost 3 stone but it is a bit like after the horse has bolted but maybe it will help me fight this as long as possible so I can be there for my children as they grow up.

    I hope they will one day be able to screen for ovarian cancer like they screen for cervical cancer but it will only work if women bother to turn up for appointments to be screened. It was in the news that there is a drop in the amount of women getting the smear tests done.

    Sorry about the long message

    Jackie

  • Dear Sarah!

    I had symptoms (flatulence & bloating) for several years but, as my dad had something similar at the end of his life I thought it was just old age. i did go to the Dr but tended to play it down. Drs are not magicians and "if only" and "what if" are pointles. We cannot change what has happened and I for one do not want to waste what time I have left on such thoughts.

    I want to live what time I have left as fully as I can. Even without this I could die under a bus tomorrow so I do not want to waste time on what ifs!

    This may sound harsh but do not waste your life on regrets and recriminations! Face your demons, tell them to piss off and stop bothering you and ENJOY LIFE! I frequently give myself a good talking to along these lines and if I am not taking notice I put a CD on loud (when my neighbours are out - I do not think their taste runs to Miles Davies, Charlie Parker, Bellini's Norma or La Traviata, to name but a portion of my taste). Whatever I play has to be engrossing enough to push out the negative thoughts. If really desperate I play the piano! The piano usually wins but it achieves the object, I banish the gremlins and get on with life!

  • I do, however, preach to young women and any friends who will listen, that, if they have any symptoms at all they need to be checked and investigated. I bore on the subject! As a former teacher I have done some talks to schools and I also urge boys to check for testicular cancer and cancer of the glans by familiarising themselves with "normal" so they know when there are changes. I bore for England on the subject! I cannot change my own condition but I sure as hell mean to help others to get the early diagnosis which can mean the difference between cure and management.

    Moral - frighten the s**t out of any young woman of your aquaintance and ensure that they are aware of the invidious nature of the symptoms of this disease.

    Meanwhile live every day as if one's last, what we should all do - sick or well!

    Life is good! I love it! (even the stoma has its advantages!)

    Margaret

  • Sorry! I realise I sound a bit upity in the last couple of posts. I do think we should have some screening. The latest reservations about breast screening worry me because I fear that they have more to do with economy than diagnostic accuracy. But I do urge you all not to waste your lives on regret. get out there and fight for screening for the next generation, bore everyone with the need to be aware of their bodies and make a fuss, but don't waste what time you have left on "if only".

    M

  • Hi Everyone,

    So I'm confused if it is called a silent killer? than that must mean you have the O.C without symptoms?,or do they mean you have the symptoms but they are so unnoticed that you just think its just something else and less serious so just going for a C125 is pointless no C125 level will have gone up because it is just to early to catch it at stage 1?, and anyway your G.P would send you away because he, she has guidelines and you cant go asking for a C125 if and when you like, we would crash the system, and to many women would be having tests and scans when there is no need. and causing a lot of anxiety!!

    sarah23

  • Hi Sarah,

    In answer to your last post - I think its both sweetheart, firstly cancer doesn`t come from thin air, it takes time to develop and grow, even fast cancers can not be there one day - then the size of a melon the next!!!

    We may not get symptoms until they are at a later stage, but this still means we would have had the cancer pre-symptoms.

    Indeed OC symptoms are often there and ignored because we are on the change of life, so often the meanoapuse can be blamed, I did this myself for six months and even then I only went to see my GP because every day my husband was on at me to make the appointment.

    Also the cancer can often be masked by other things or we assume they are something else, not just the menopause.

    It is indeed a difficult one but as Margaret said there is little point now trying to work out why we ended up with the cancer. Self blame is distructive.

    Jacks,

    you say that you blame your over weight. Although it is said that obesity offers us a higher cancer risk - to be honest it may not have even been that, so don`t waste time self blaming yourself because of the weight problems.

    Even healthy eating can cause cancer and if we start the diet subject we`ll be here all day and a diet war may break out between us.

    The reason why I got the cancer was a faulty gene but why now I have no idea, I had been at risk through my life but my age made it more likely to occure now.

    Had I known I had this faulty gene I would have been offered the option of prevention. Now, if my daughters have the faulty gene they will be offered blood test and regular screening, although the reason why screening is not safe is because it can actually increase our cancer risk. They would also be offered surgery as a prevention too, but this will not prevent them from other cancers.

    Statistics - well, sorry ladies I differ to agree with some of your comments, yes we are all aware they are at least 5 years out of date but at least we have something to go on and without the research and the statistics we would not be as safe as we are right now. Research cannot develop without the statistics, this is how trials are worked out, without them cancer research could not proceed.

    Many cancer patients develop the disease for no more reason than rotten bad luck.

    It would be dumb to believe that the statistics are a definate personal prognosis, which I must add they are not and nobody tells us that, although we may interpret it that way because we can often eat ourselves up with worry.

    If I ignored statistics then I would certainly be blind folded about my breast cancer risks and would do what? Nothing about preventing it from happening!!!!!! I accept that just because my statistics tell me my faulty gene puts me at a 80% risk in a life time of developing breast cancer doesn`t mean I will definatatelly develop it, I still have a 20% chance of not getting it, what would you do Margaret, ignore the statistics and keep my glass half full and refuse double mastectomy?

    I strongly feel sure that you wouldn`t ignore such grim statistics had you been told you had a 50% risk of OC, tell me what would you do, tell yourself? "

    oh well, my glass is half full, I also have a 50% chance of it not happening" and do nothing.

    Well, you`d certainly kick yourself up the hoot if you buried your head in the sand. Indeed life is too short and too precious as well we know, worry makes us ill, however, we must still be realistic and face the if, buts and maybe`s. Living life to the full after cancer and taking the best parts and enjoying them is in a kind of way, living with the if, buts and maybe`s because you deep down fear your life is cut short now and you intend to spend the good days in your best interest while you can.

    Sorry if I sound blunt but for some people they need to handle things in a totally different way to you Margaret!

    Breast cancer - I read in the local newspaper last year how many women in our home town alone who didn`t show up for their routine three yearly mamogramme appointment.

    Breast cancer often does not show lumps or symptoms at all. It can be equally as difficult to diagnose without the screening as OC. I know lots of people who were diagnosed with breast cancer through the 3 yearly mamograms, some suvived, sadly some didn`t. And they also live with the worry of a reocurrance.

    OC may be listed as one of the silent killers but many other cancers are too.

    Often there are no sympotoms with other cancers either until they are at a terminal stage. And sadly lots of BC are missed because they develop between the 3 yearly mamograms in which case those screenings are of little use to these people.

    Last summer an extremelly healthy 49 year old man who cycled marothons was unable to attend his neaphews wedding because he was racing.

    2 weeks before the wedding I finished my last cycle of chemotherapy, I thought about michael and in thought said how lucky he was to be able to be so active at his age, in my head I asked why? why do some of us have such terrific fitness while others have ill health? This was April 2011, by June michael had died.

    Un known to him, he had an aggresive stomach tumour, he only went to see his GP because his timings were all wrong with his race. He blamed it onto age, but decided he should visit the well mans clinic and have a routine health check. When the results came back he was given 10 days to 10 weeks to live, he sadly passed away three weeks later. It shocked and devestated us all, and it really made me stop and think very hard about our own personal life challenges. So, in April I feel envy for this athletic man, two months later I can only feel shock and sadness and lots of grief. Its never alright for someone else, let that at least teach us something!

    It could help some ladies if they found their natural level of protein and go from there, we could also pay for the CA 125 if we wished to do so.

    They are using this test on us NOW so why not pre-cancer, I understand the pros and cons but does that change once we`ve actually had cancer I wonder? surely we could still have a raised result due to another infection, and if this happens to us now, it would indeed cause us a tremendous amount of panic. Personally I may be dumb but really what is the difference? It could also save a great many of ladies.

    An example:- my GP referred me immediatelly to see a gyneocologist for consultation and scan, this could have been a complete watse of NHS funding had I been ok, but had she done the CA 125 blood test first a) my levels of 1,080 may have meant I could have been seen sooner rather than the 4 month wait.

    I was seen on the wednesday, the following tuesday I was called back to hospital the following day, I was diagnosed and cut up on the friday of the same week, oh yer, that quick, that urgent. I hope you can see where I am trying to come from.

    I hope no offence is taken, I hope you girls enjoy the read and I will look forward to more discussions. Between us its good to battle it out, its good to share our thoughts and they are far better out then in.

    Love you ladies and Hugs sent from Tina XXXX

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