Before my diagnosis my first symptoms were put down to IBS by myself and my GP. I was eventually diagnosed in A&E with stage 4. The BEAT strapline does not include IBS type symptoms or frequency of urination. Please can you let me know if your first symptoms were other that the BEAT as I am
going to look into campaigning for greater awareness. I know Una Crudden was misdiagnosed also as having IBS but I'm trying to include ladies whose GP suspected IBS but did the CA125 and or any other checks/scans/referrals etc.
I think if the comms we pick up in our GP practice included all the symptoms could save more lives with earlier diagnosis.
Thanks
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I only had ibs type symptoms. So just got something from chemist. Eventually had horrendous knotted pain in my side. Went to hosp where they gave me antibiotics for a urinary infection. Rang drs asking to see dr when symptoms continued given more antibiotics without seeing dr. No better half way through course and demanded to see dr. Very difficult to get past receptionist. She wanted to pass me on to nurse. Dr sent me for blood tests. Ca1251100 . The rest is history ovc 3c. Apparently not ibs if over 40. Don't think over counter medication should be advertised on TV for this. Dr should be first port of call
The worrying thing is that MRHA (Medicines and Healthcare Products Regulatory Agency) say that more medications are to be made available over the counter. The public need to be aware that they can ask for a private consultation with a pharmacist before buying products. My worry is they might not have the same trust in a pharmacist as they do their regular GP.
Basically any woman presenting with IBS symptoms for the first time, aged 50+, ought to have additional tests including CA125.
I went to my GP with IBS-style symptoms a couple of months after my 50th birthday, having never had any bowel issues in the past. I was already aware that ovarian cancer was a possible diagnosis so when she suggested having a CA125 I readily agreed. When she also found a pelvic mass she immediately referred me under the 2-week rule to gynae oncology. And eventually I was diagnosed with 3C high grade serous OC.
So there is definitely some knowledge out there amongst GPs but it sounds as though not all of them. Very problematic for women I imagine who already suffer from IBS as they are unlikely to get picked up as potentially having OC.
Hi Judith I think it was really good that yu were aware of the symptoms, I was not and I consider myself a switched on person health wise plus I had already had Cervical cancer (stage 2B) in 2004. The thing is not including IBS type symptoms or urinary problems like Hertsmum and Nanny T (below) could mean women do not seek medical help.
Good point of course. I should have mentioned that it was actually on the Target Ovarian Cancer site (which seems to have since changed) that the mention of IBS rarely starting after 50 that caught my eye (in a BIG way) while I was researching before going to my GP. So that message definitely needs to be more broadly disseminated.
Another thought would be whether on IBS sites we could convince them to put something prominent about late onset potentially being something different, with a link to a site that does mention this as a major symptom, and repeats the message about late onset being more of a warning sign and to go to the GP to get checked out. It would be fantastic if the ovacome site would include this, as then we could point all the traffic there. An edit on this page would do the trick: ovacome.org.uk/about-ovaria....
Thanks Sue. Its not good is it, but hey the stats say each GP is each likely to see at least one new OC patient per year x that by the number of GP's at your practice then thats potentially how many lives could be saved by earlier diagnosis. I realise some may argue the women have to be in the GP surgery to see the literature but the average women must go to her doctors at least a couple of times a year ie a smear test, jabs to go abroad, taking a child or grandchild, to support a partner/any general ailment.
Be aware the Ovacome poster only contains the BEAT symptoms although the leaflet does refer to bowel bladder but I think it does not stand out as much as the Target Ovarian (and this is probably why Una Crudden persuaded them to use the Target material. I also think if the charities joined forces with a united front to one clear message/one clear campaign this would possibly help improve awareness rather than diluting the key messages but I appreciate they have evolved as separate organisations organically and it would cost money and be difficult to come together.
Both these charities supply the campaign material free - wouldn't it be great if as many of us as possible either ask our GP practices to get the leaflets, or ring up ourselves and take them to their local practice. Just a thought
Well done you, March 2015 is Ovarian Cancer Awareness month. Imagine if more people got involved. I'm going to share it on my Facebook/Twitter page as well as following in Unas footsteps about a wider leaflet drop.
I had no symptoms at all until the ovarian cancer was advanced. I have a photo taken 2 months before diagnosis on an exciting trip abroad and I remember looking and feeling on top of the world.
I went to my GP in March 2011 because I felt something was wrong but couldn't put my finger on it and the strangest thing was completely losing my appetite and yet I still had no pain or bloating. He was really on the ball. Said I was clearly under a lot of stress which we'd deal with first, and if I still felt ill after taking 2 weeks' leave, a programme of exercise, and spending time thinking how I'd tackle work-related stress, we'd investigate further. At the follow-up appointment 2 weeks later I said I had a slight scratchy feeling in my abdomen during exercise. He felt a lump, and I was on track for a swift diagnosis.
I think the BEAT idea is a good one because it fits on an A5 poster or business car and these are good for putting in pharmacy windows, doctors' surgeries, etc. The drawback is it's just a sketch of 3 symptoms women can experience. Someone has suggested the T could be used for 'change in toilet habits' which would be helpful and fits your idea to highlight frequency of urination.
I so agree with you that women should also be made aware of the conditions it will not be, or the things screening will not test. All GPs should be made aware that IBS doesn't suddenly start when women are 40 or 50, and I wish correspondence for Cervical Smears confirmed what it is testing for and what it doesn't test. So many women think they test for ovarian cancer. The Cervical Smear appointment could be extended to raise awareness of all gynaecological cancers for little cost and effort but surely great impact.
I'm aware there is a campaign in England to restore Ovarian Cancer to the Be Clear on Cancer TV Campaign after Sean Duffy suggested it had not been effective for ovarian cancer. Women in England are urged to write to their MPs. Scotland and Northern Ireland have pledged to an awareness-raising campaign but Wales has nothing in place.
I think there are stats available for the number of women diagnosed in A&E. I would have joined those statistics had I not been seeing my GP about some very general problems. The pain developed very quickly in just 2-3 weeks but by that time I had been referred to a gynaecologist so I just got stronger and stronger pain killers from my GP until I could have surgery.
It's fantastic so many women are doing things to raise awareness of ovarian cancer, its symptoms, and to lobby for more research and the quest for a screening programme. Are you in touch with the charities to join their campaigns?
I wish you all the best with your campaign idea. xx Annie
Hi Annie. The ads in NI are to start next week. The initial ads are to urge people to go to their GP if they are worried about a range of symptoms that they are listing. The as specifically for OvCa will not be going out until 2016/2017. With Una’s lobbying though she did get a leaflet drop to all pharmacists, GP surgeries, hairdressers, Bingo halls and I think beauticians before she passed away. They used the Target Ovarian Cancer symptoms leaflet though as it gave the best coverage of the symptoms. Ann
That's brilliant. I saw the coverage of Una with the Target Ovarian Cancer leaflet on Facebook. Do you follow her? I find it slightly unnerving that she still posts and it brings a wave of sadness but understand the reason for continuing because she had an amazing following on Facebook and Twitter and did such a lot for the women in Northern Ireland.
Still absolutely no sign of any awareness-raising in Wales though we have benefitted from the English Be Clear on Cancer Campaign when watching television programmes broadcasted from Manchester.
Let's hope Ovarian Cancer Month brings with it lots more awareness raising of Ovarian Cancer, and also all the five gynaecological cancers. I hadn't realised how little there was for some of the women with the lesser-known gynae cancers until this week. xx
Bless her, I am inspired by Una's legacy and I for one will try to do my bit to raise awareness. Una said on the TV programme that the fact they were doing the CA125 in NI was already helping to save lives how wonderful was she very sad but at least she knew she had bought about a very positive change in the shape of earlier diagnosis.
Yes the ads have been devised by Public Health England. Sean Duffy came to the last APPG and gave a very negative feedback saying the campaign for ovarian cancer hadn't been successful. He hadn't anticipated the way women with ovarian cancer in the observers' area would react. Some excellent comments and points of view were expressed by members of this forum. Seems there might have been a volte farce as a result of all the campaigning and criticism about removing ovarian cancer from the Be Clear on Cancer Campaign.
Itss good to know some GP's are on the ball, a GP at my practice said she regularly did CA125. however when I was diagnosed in May the GP I saw 3 times in the month leading up to my Gross Ascites was treating me with diuretics for my 'fluid problem' I ended up in A&E within a week after ringing her up to say the tablets were not working and I was gaining weight every day (I was weighing myself daily and had put on over 2 stone in 3 , which ended up 3 stone by the time they had diagnosed me in hospital. When i got out of hospital having been drained of 12 litres and then 4.5 litres (they said there was more but as was in pockets was difficult to drain. I went to my GP practice and asked If I could see the lady doctor wh had treated me as I wanted to see if she knew my diagnosis. She said she had seen the hospital letter and she was shocked. At the time I did not think anything of this as I just wanted to know if she knew as had suspected it to be other things. Now I just think how could she have been shocked when the NICE protocols say to do a physical exam to check for ascites. I did not need an abdo exam I looked like I was about to give birth to a baby elephant and could not drive as I had to move my seat far back to get behind the wheel and my feet could not reach the pedals. Feel like adding LOL here but I guess it was not really very funny but LOL anyway as can laugh about myself x.
It must have been a terrible time. My friend had the same experience going back and forth to the doctors and no action even though she said she looked 9 months' pregnant. It's good there is accredited GP training out there for the diagnosis of ovarian cancer. I heard 10k GPs have completed the 30 minute online training. Sometimes with all the experience we get I think we ought to be awarded an NVQ in ovarian cancer. xx
I first had symptoms nearly a year before diagnosis, not IBS but indigestion, not heartburn just painful indigestion mainly in my chest, I went to doctors five times and was given indigestion tablets, told it was stress tried me on antidepressants! It wasnt until I felt a flutter like pain and a lump, although doctor couldnt feel it, that I finally got a blood test, even on that visit I was told to keep a food diary they thought I had a food allergy. Ironically it was a very young inexperienced locum who un be known to me had also ordered a CA125 test. Bless her she probably saved my life. Diagnosed 2C Aug 2013, I think if a blood test was done when I first went to doctors it my have been a earlier stage, it got so big it was pushing my other organs out of place, which is why I had such bad indigestion. No bloating, or need to wee, but I did feel very unwell. Hope this helps, still no posters in my local surgery
I agree if GP's did a regular CA125 as I think is what Una Crudden was campaigning for in NI saying it cost £12 or £13 and was not too much to pay to save a life plus it would save millions in treatment for advanced and reccurant OC. xx
My symptoms were feeling tired and having 'accidents' (wetting myself!) , I was lucky that my GP was on the ball and sent me for a scan within 2 days, but I was already 3c. I didn't have anything else that would have made me suspicious, and I had no idea it could be OC, I'd never seen an advert, hope this helps, Trudy xx
I think it's important that women know that there isn't always bloating with OC. At least not in early stages when there is most chance of cure. 2 years before diagnosis I had a feeling as if something was pressing on my bladder and missed 2 periods. Knew I was not pregnant so GP sent me for ultrasound which was normal. GP did not order CA125 and as periods returned and bladder problem seemed to go no further action. A year later started getting a dragging niggling feeling very low in pelvis. This time had CA125 and was elevated but only to 40. Was referred to gynaecologist who examined me and told me categorically 'it's not ovarian cancer'. The pain went away and I thought I was fine. 4 months later it came back along with bladder problem again and what seemed to be 'accidents' - so was referred this time to a urogynaecologist - big mistake! even though my ca125 was now 98 he said it was very unlikely to be cancer and there was no great urgency. I still had no bloating and no appetite loss. Further ultrasound showed an enlarged ovary but after MRI was told it was a benign fibroma or a fibroid behind the ovary. Only when I had laparoscopy did they finally discover the cancer by that time quite advanced. Urogynae admitted that the 'leaking' was a classic symptom of cancer in the Fallopian tube - where mine started.
So definitely think changes in urinary habits should be included in awareness and message that women need to listen to their bodies very carefully and if something doesn't feel right for them be insistent about getting tests done early and get them repeated if initially normal but symptoms continue. It really is a devious blighter to diagnose but there must be a way of saving so many women from late diagnosis and all that goes with it.
Also need to get the message through that OC can affect women of any age and not only post menopausal women.
Saw pharmacist early on with IBS symptoms. She gave me Colofac .When I later saw her after my diagnosis and operation I told her about my condition and she just shrugged and said it is difficult to diagnose. We all know this now. But handing out medication initially I feel is still not great. I hate the adverts for IBS Medications on TV and feel strongly doctor should be first port of call. I had no other symptoms other than funny bowel habits. Awareness is definitely the key.
My first symptom was also not on the list, it was pain during intercourse, and sort of period pain type sensations at other times, but as i was breast feeding 12 month old baby The tiredness, haemmoriods and persistent need to urinate I put down to post natal normality. in fact 3 large the other symptoms came after. I mentioned this to my GP when I had an appointment to see if I could have a coil fitted. She did an internal exam an immediately referred me for a scan.
I think all symptoms should be listed on the leaflets as the message should be to talk to your doctor about any new symptoms OK they can be listed in order of most common but surely the list is not that long as to warrant advertising space to improve early diagnosis. The term 'not worth the paper its written on' comes into my mind that makes me question the current 'research' which indicated it best to omit some common symptoms like irritable bowel/frequency of urination from the main strapline of BEAT on the Ovacome posters.
Ah but the BEAT business cards are absolutely brilliant to leave about in places where shops or organisations wouldn't agree to having posters put up. At the end of the day the campaign is also about raising awareness of ovarian cancer and better to have a few symptoms listed with links to Ovacome and the words Ovarian Cancer, than nothing at all. I'm sure there's a case for all sorts of communications. Let's hope there are loads out everywhere this month. I'm looking forward to hearing what various media, news, articles are appearing for National Ovarian Cancer Month. xxx
I wonder how many pharmacists are familiar with Ovarian symptoms and I also wonder how many of them have ever heard of PPC? Certainly, it would be stretching it a bit to ask them to recognise an illness even GPs fail to spot.
In my early 20s I was told I had IBS but there is no actual test for this. I used to get cramps and urgent need to go to the toilet. Once I had moved my bowls I would feel better. A lot of this settled down as I got older and as I improved my diet.
As I got older I my bowel habits changed and I became more prone to constipation often it was stress related as well. I remember buying my first flat and suffering that was when I was 30.
When I started getting symptoms with constipation and feeling bloated at first I thought it was something to do with IBS so I bought some books tried changing my diet a little. Then I bought a couple of those self test packs you can get over the internet one for coeliacs and one for bowel Cancer. Both of those were normal and I did not think it might be related to something gynaecological.
The bloating was getting worse and it wasn't like my normal bloating it didn't come and go and also even when I did move my bowels it felt like I wasn't completely emptying them so I went to see my GP all set to demand to be referred to a gastroenterologist.
It was about this time of year four years ago when I went to my GP practice. I remember walking into the waiting room seeing the ovarian cancer posters on the wall and thinking 'oh f@ck'.
My appointment was with the nurse practitioner as there were no GP appointments available she examined me and got me in to see one of the female GPs. As the GP examined me she noted I wasn't wearing a bra and asked why and I just said it was too uncomfortable the GP got me in for some bloods tests the next day even though the receptionist said there was no appointments. They got the results back the same day as well and I was extremely shocked to be called into the practice later that day. I think that was the scariest appointment ever being told I was being referred to a gynaecologist for investigations for ovarian cancer.
At the time she banned me from the Internet and wanted me to go home to my family in Manchester but I wasn't fit enough for such a long journey as I found sitting really uncomfortable. That was when I found this site and people on here some who have since sadly passed away gave me the strength to face my Cancer journey.
The poster campaign worked for you so isn't it sad that a lot of GP practices dont have any posters, I do hope the communication campaign improves March is Ovarian Cancer Awareness so lets hope more people get involved ie go on Target Ovarian website, request the literature, take it to GP's and spread the word...I know I am plus any other GP practices I come across, keep some posters/leaflets in my car etc
Reluctant as we are to jump in on threads, a few issues have been raised here which require an answer.
Sadly there is no evidence that signs & symptoms awareness impacts on survival. Intuitively we all like to believe that the same disease diagnosed earlier would be more survivable, but its really important that women do not feel guilty for their advanced stage.
Most OC is diagnosed at stage 3, but there are over 60 different types of OC and they behave in very different ways. Some are tiny ovarian tumors which metastasize to stage 4 in the very earliest days (even missing stage 2 & 3), others are stage 1's that just stay at stage 1 - the whys are difficult to understand.
We will learn much more in the summer when we hear the results of the UKCTOCCS screening study. What we know at the moment, based on published screening studies, is that if you detect OC by a screening test - before a woman has any symptoms at all, it still doesn't make any difference to her survival. Obviously we hope that UKCTOCCS is positive, and have been supporting this study since its beginning 16 years ago. We will of course share the results as soon as possible (Sometime in June)
None the less Ovacomes studies have shown that on average a woman waits 5 weeks between the onset of symptoms and first seeing her GP about them. The GP then takes an average of 4 appointments over an average of 12 weeks to tell a woman that they suspect or want to do tests to determine if OC is the cause. (That is not to say that they didn't think of it earlier - most report that they need to exclude more likely causes first and don't want to cause undue concern)
Ovacome created the BEAT symptom tracker to assist in bringing these times down as it helps to address some of the practical issues women and GPs experience in getting to a diagnosis. So far we know of 8 women who have been diagnosed by using the tracker in its first year.
A few questions and points have been raised which we wanted to respond to.
A full time GP sees a case of OC on average once every 5 years.
BEAT is an Ovacome created campaign, based on the consensus of the UK community (The Royal colleges, professional bodies and the charities of the time) We shared the BEAT concept freely to all OC charities , and it is used in the USA, Canada, Australia, New Zealand as well as Brazil and Spain. The change of the T to be Trouble with your bladder was undertaken in the USA at our suggestion to accommodate their national consensus document which, unlike the UK, includes bladder symptoms. The important consideration as to which symptoms is based on their positive predictive value to ward against 'background noise' - There are over 100 symptoms of OC (including breast lumps, neck lumps, swollen leg etc.)
As stated on another thread, Ovacome will not be changing the BEAT messaging unless new research comes to light indicating that it should be changed.
The reason that the DH did not extend the symptoms awareness campaign 'Be Clear on Cancer' is that the evaluation showed that it didn't really work. They chose another campaign that had evaluated better. Of course those of us who have faced the horrible news that we have OC want to make sure that everything that can be done is being done. Ovacome will continue to lobby all influencers to make sure that OC gets the consideration it should and that everything that can be done will be done.
We have an exciting program of Awareness opportunities starting this Sunday that includes online, TV and print media. We hope that you will all join in to make them reach far and wide.
I've thought long and hard about this post since it appeared at midnight yesterday. Firstly, I hope whoever is representing Ovacome is ok- I would be a bit concerned by colleagues working so late!
I am a supporter (in different ways) of all the OVCA charities and this is no way a criticism of Ovacome as a charity.
But, there are many fabulous, altruistic women and men on this site who desperately want to make things a little better for those who will inevitably follow us in this diagnosis.
Some may be planning cake sales, others speaking to MPs, papers, local groups, posting photos with their daughters, wearing teal, or becoming politically involved.
I have a pile of beat cards, some info from the Be Clear on Cancer campaign and some leaflets by TOC which are due to be displayed in local hairdressers and put through every letter box on my street on Monday. It's not much, but I shall continue to do what I can.
But, in your post above apparently "there is no evidence that awareness of signs and symptoms affects survival"- this seems to be the most extraordinary statement for an ovarian cancer charity to make- not least in the potentially devastating affect it may have on many of your members.
Furthermore from a brief look at the Ovacome website- the BEAT page makes reference to how in 2008 when it was created it was intended to raise awareness of these symtoms.
I do have other queries about the statement above, and concerns but shall leave it there for now!
I too was shocked by the response which I read last night. To be honest I did not get much sleep. I felt the response did not take into account I am just one women with a poor prognosis trying to do what I can re earlier diagnosis and awareness. My mind boggles with the Ovacome response as if you look at the Target Ovarian website Early Diagnosis and Symptoms awareness is their key priority. On behalf of Una Crudden and lots of other ladies who have campaigned in this area, I make no apologies.
If Ovacome want to kick me of this site then that's fine by me, it will only serve to stoke my fire as energy levels as you know are an issue!
By the time I went to my GP, I had a tumour that was taking up most of my abdomen. (Fortunately, it turned out to be Borderline Stage 1.) I thought I was just getting 'a bit of a tummy'.
With hindsight, I had all the symptoms - except pain or bleeding. None of them was bad enough to go to the GP for. Mild stress incontinence, (but I'd had 3 children), a bit of heartburn, loss of appetite, (but I was going through a stressful time). A bit of breathlessness.
I put them all down to getting older.
This is what you tend to do when you're retired. You expect things not to work as well. I remember thinking someone ought to write a pamphlet, like the sort of thing they give to pre-pubescents. 'This is what happens when your body gets older. This is normal. This is not.'
My suggestion is a leaflet (not just for OvCa) to be sent out by the DWP when you get your pension. Or give it out with the bus pass. (If we still have them!)
The chances of all sorts of common cancers rise with age. I hadn't been to a doctor's surgery, except for flu jabs, for 7 years. This would be a way of targeting one section of the population at an increased risk.
I am so shocked at some inaccuracies here .. i am blown away ... really..
Well I guess it was a complete waste of my time posting on the CLL community of which I have been a member since not long after it started.
I outlined the symptoms Decca4ever mentioned, and advised anyone experiencing these symptoms to ask for a C125 blood test, because my GP examined me and although she touched the mass did not recognise it for what it was. Only paying to see a consultant identified the cancer. The post by ovacome administrators implies my operation and chemo is a waste of time I am either going to die or not.
I have lurked on this site and have admired the ladies who contribute here. Ladies continue the excellent work, I and I am sure many others have benefitted greatly from all the contributions.
I had just type a reply to ovacomes post but I went to check my facts and have lost it so this is a summary:
I don't blame myself for being diagnosed at a late stage
I am grateful to the ovarian cancer campaign it saved me many trips to my GP
In my case I probably had the Cancer for many months before I got any symptoms
I think a national screening program would be a better investment if it comes down to a choice between the two
However based on Prof Ian Jacobs talk last year in Manchester it seems likely that any screen program is likely to focus on women with a BRCA gene mutation. This only accounts for 10% of cases.
I think the above post by ovacome has caused a lot of unnecessary upset and confusion. Why produce any symptom information? Why be involved in OCAM?
The last thing I wanted was to upset anyone, I just did not want anyone to ignore symptoms that could facilitate earlier diagnosis so perhaps a bit more thought should have gone into my reply. I apologise unreservedly for any upset I have caused.
This sentence in the admin post upset me :
Sadly there is no evidence that signs & symptoms awareness impacts on survival.
I shall continue to admire and be grateful to all the ladies who take the time to post here, but leave comments to those more experienced than me. My best wishes to all.
I very much doubt Ovabub that you've upset anyone... Scardycat's post is in reply to the Admin post further up but sometimes they get a bit out of synch!
I think it's really important that everyone feels able to post- yours was a heartfelt and honest response.
My personal understanding of the discussion about whether bowel and bladder symptoms should be included came simply from a desires of a number of passionate women to do the very best job of raising awareness of OVCA. It's not so contentious either as the shortened 60sec BEAT Tracker online groups these with other possible signs at question 4 after the usual B...., E...., A..... questions and asks,
"Have you experienced urinary problems, changes in bowel habit, extreme fatigue or back pain recently?"
Do consider reposting again, I know how scary it can feel- I stalked the boards for months before I felt I could post. There will be differences of opinion, sometimes misunderstandings but the more voices are present, the more the online community is enriched!
Sunfleury is right I was responding to Ovacomes post not yours none of us like to feel we are wasting our time trying to raise awareness.
Someone quite rightly pointed out that it's lots of little things that make the biggest difference.
I think what has got lost in Ovacomes post is that awareness campaigns can be useful in speeding up the diagnosis process by empowering women and educating GPs. GPs are expected to know about a great variety of medical problems the mind can only retain so much information and once women get to Stages 3/4 then the overall survival starts to fall.
Hey Ovabub - don't ever stop posting! Your thoughts and your company here on the forum are are hugely valuable. You certainly didn't upset me by just saying with a genuine heart what you feel. Sending love xxx Annie
Ovabub, Please continue to post as its by talking to each other we can learn and make some sort of sense of this horrible condition and help us collaborate together to make a difference. Best wishes to you lovely lady x
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