Misdiagnosis & OC Awareness (or lack thereof)

I've read so many posts from ladies who have been misdiagnosed. For example my Mum - once the GP had found a hiatus hernia, the book was closed and all other symptoms ignored. She was ignored and misdiagnosed for a year until she was told it was aggressive 3c/4. What was your experience?

What I am confused about is why a CA125 test is not done routinely if digestive issues etc arise (especially for older ladies like my Mum)? Instead they wait until a lump is palpable or symptoms get so bad that it's impossible to ignore.

I know there is a lot of ignorance about OC generally. If I had known that collectively, her symptoms were indicative of OC, then we would have caught this earlier. But it seems that the doctors themselves are either unaware or need to keep costs down for tests etc. Surely a blood test isn't too expensive and will save money in the long run if they catch this earlier?

Sorry if I sound bitter, but it's just sad to know that more women will go undiagnosed and ignored and have to go through such a battle. I wish OC had as much star power as breast cancer!

Thanks in advance - you ladies are true warriors

37 Replies

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  • I've often wondered this too, Biscuitqueen. My journey to diagnosis was fairly complicated, and I understand why OC wasn't thought of sooner, but I have often wished that my GP had just ticked the CA125 option on the initial bloods that she requested for me.

    As it was, my age (under 40), child bearing, breast-feeding and prolonged pill taking all made me 'low risk' for OC, so when I was diagnosed with coeliac disease it ticked all the boxes for my symptoms, and that was the end of the story. Apart from the fact that it wasn't, and three months later I was diagnosed with OC too 🙁 I'd been symptomatic for around 9 months by then.

  • I'm so sorry to hear your story Yoshbosh. I can understand that they think it's other things because you were in the low risk group but doctors know that there are exceptions! Wishing you luck for your journey ahead :)

  • You are absolutely right in the fact that the GP's are either ignorant to this cancer , or as it's deemed not a common concer, put it to the back of the queue when they are presented with symptoms..

    I too was misdiagnosed from Feb this year, I was told it was diverticulitis!

    It was only when my bowel became totally blocked in July, and I was rushed in to hospital, did they then discover that it was in fact stage 3c Ovarian cancer..

    As a result of the bowel blockage I now have an ileostomy.

    It does make me wonder if they would have actioned the appropriate tests earlier on in the year would I have had to undergo such drastic measures..

    I am currently doing well having undergone 3 chemos, which shrunk the cancer , then debulking surgery carried out three weeks ago, and I'm due to commence the rest of my chemotherapy on Thursday..

    May I wish you all the best , and to say this is a great place to offload anytime!!

    Much love ❤️ Jackie xxx

  • Sounds like you're a real fighter Jackie! My mum is going for surgery this month and after hearing what you have to go through, I hope you're being waited on and pampered following the surgery! So great to hear that the chemo has shrunk the cancer. After preparing her for an ileostomy, I can see it's a bit of a life changer but I hope you are coping well with it. 💕

  • HI Biscuitqueen, yes you are so right GPs don't even think it could be oc its crazy.

    I started complaining in 2011 about heart burn, reflex, swollen tummy, back ache, feeling sick, bleeding & lots of other symptoms related to oc & kept mentioning it was in my family, 5 members suffered with oc & bc but no one listened to me. It took another 4 years to find it & by then I was told I only had 6 months. I find it very hard to trust doctors now. Take care Cindyxx

  • I'm so sorry to hear you had to battle against the doctors, especially when you have a family history...It shouldn't be like this, I feel that it's not uncommon for them to just brush off people's concerns. I hope you are doing as well as can be both emotionally and physically. I'm sending a virtual hug over this message! 💕

  • I so agree, Biscuitqueen! My GP didn't even consider a blood test until after I'd had to wait six weeks for a scan, which turned out to look very dodgy (or, in her words, 'not very encouraging'!!). My CA125 was 3,900! Bit of a give away, I think. Is the answer better GP education, perhaps? Be as bitter as you like - I think loads of us agree with you 100%. Deb x

  • Hello Debbie,I thought doctors were supposed to be systematic, surely doing the blood test before the scan would have been a more logical decision?! I'm also bitter about the wait for scans haha! I know that there are queues and overcrowding etc. and they say there's no room in budgets to alleviate this but it seems that they have money to splurge on other things!

  • Different doctors in the same practice clearly don't follow the same systems. My scan was actually outsourced to a private company - very posh offices and no waiting! It's been the local hospital since then, but I can't fault them and the staff are lovely.

  • Hi biscuit queen, Isn't it scary that this nasty disease is so very often misdiagnosed, the medical profession call ovarian cancer 'the silent killer' because it is so often missed and/or misdiagnosed, often it is thought to be IBS as the symptoms are so similar and if there are no obvious symptoms to support OC GPs carry on saying it's digestive or menopausal or 'hormonal' (don't you just hate being called hormonal?). We really do need more awareness about the symptoms so more ladies can be saved and their families do not have to go on this dreadful journey. There is so much out there in media land about breast cancer and whilst this is a horrible disease, it is so much easier to diagnose and thankfully there are regular tests for it (but only if you're over 50!).

    I believe that it would be prudent to do a CA125 at every smear test, yes there is a cost implication but the long term savings both financially and physically would surely more than cover this cost?

    The treatments for OC are getting better and better and they would be even more effective if the disease was caught earlier? It's purely down to ignorance of the symptoms. I'm not saying that every medical professional is ignorant, just that they are not 'savvy' enough to look at possible alternatives other than IBS or menopause etc etc. We know we ladies are a wonderful mystery to the medical profession but it's time to change that mystery and misinformation so more of us are given the opportunity to survive.

    I believe that there should be more training to make doctors more readily aware of our cancer and the desperate need for speedy action. Maybe we could start a movement to make people more aware. We could all write to our members of parliament to ask for screening and better awareness? We could ask for legislation to ensure that doctors are given time to assess us correctly when we present with our symptoms? We could contact the media to do articles on the symptoms and treatments for OC. Every year there is breast cancer awareness day when we all wear pink. We need an OC day too, there is a little teal coloured teddy on a motorbike roaming around Facebook from time to time that represents OC but because our cancer isn't high on the list of known diseases he often gets ignored.

    I know this is a long rambling answer to your questions but there are so many ladies, and their families, who have all had such turbulent times just trying to get diagnosed let alone treated, that it makes me so very very cross that we continue to read these stories. I have a close friend who had to battle her GP for an awfully long time before finally being diagnosed at stage 4, whose to say if they had been more proactive and knowledgeable that she could have been helped much sooner when her long term prognosis could have been so much more positive?. We need to try to write to everybody we can think of to try to get the awareness levels raised so we can at least save ourselves and future patients.

    I am so sorry your mum had such difficulties with her diagnosis and it is gratifying she has such a supportive daughter to help her. Wishing you all the best you would wish yourselves, good luck to your mum with her treatments. Have a lovely Christmas ❤️Xx🎄 Jane

  • Hi Jane, your answer was not rambling at all! So eloquent and you spoke the truth! There definitely needs to be more about this in the media. Star power is what the OC awareness campaign needs. It's only when a celebrity talks about it that it gets the masses fired up and informed. I believe that in this day and age of overcapictated and uninformed GPs, the public needs to inform and educate themselves. We can no longer place our health solely in the hands of our doctors. I am going to do some research; there must be a celebrity who has been touched by this in one way or another, it's difficult to do a social media campaign but you never know what can happen, the ice bucket challenge for example, started off small and look how well that did!

    I hope you have a lovely Christmas too, my Mum will be in hospital then because her surgery is just before Christmas so keep her in your thoughts/prayers! 💕

  • I am one of the lucky ones in that, while the GP I reported symptoms to, suggested gall stones, she did ask me to have a blood test and did tick the CA125 box. Even so my diagnosis is stage 3/4.

    I had a chat with a researcher from Bath and she said that the CA125 test is not sufficiently accurate as a diagnosis of OC (it can be raised in cases of ovarian cysts and Fibroids), and that is why is is not offered as a routine test.

    I have also heard that loss of bladder control can be an early warning. I went through a period of wetting myself and not being able to stop the flow once it started in my mid fifties and I wonder if that could have been a sing rather than the "sensitive bladder" the adverts all refer to.

    Diane

  • I heard that too, that it's not a conclusive test but I feel that a CA125 value well over 34 will indicate that something is wrong. My mum also had bladder weakness; the reason being is that one of the tumours was pressing against the bladder. I think because of those adverts, maybe women are disregarding a potential symptom. I'm not saying that bladder weakness itself is a symptom, but combined with other symptoms, it is an indicator surely?

    I hope you are keeping well Diane, and enjoy Christmas!

  • My grandmother's GP never got the chance to diagnose her at an early stage because she chose to ignore her symptoms. By the time I made her go to the doctors (I still feel bad sometimes about making her face up to it), there was very little they could do to treat her OC, luckily it was a very different story for my sister and she's doing really well now.

    Thankfully I have a great GP, who is happy to learn from his patients. Some years ago, when I mentioned that an American friend had sent me a book on fibromyalgia that had been written by a doctor who was himself a fibro sufferer, he borrowed my book and read it too. And since my sister was diagnosed, he's added a CA125 test to my twice yearly thyroid blood tests, I already suffer with a number of the warning symptoms as a result of IBS, but I'm confident that I'm in safe hands. I just wish all GPs were more aware and I really like Jane's idea of a CA125 test with every smear, I think they should be routine with suspected IBS too. I don't know what a CA125 test costs, but surely it's worth it to potentially save a life?

    In the meantime, I'll continue sharing OC information on my Facebook page, talking to friends and others, and making my own little teal teddies for Ovacome each year... which reminds me, I need to start thinking about my next one soon 🐻

    I really hope that one day, no woman will have to go through what some of you have described here xxx

  • It's so lovely to hear that you have a great GP, it's so refreshing to hear that he/she is open minded and happy to learn from his patients. So sorry about your grandmother. Don't feel bad though, I'm sure your grandmother was a strong lady and although she chose to ignore her symptoms initially, there is something almost weirdly comforting about knowing what is going to happen to you towards the end.

    I totally agree, a CA125 test with every smear test would be a great thing to do! That way, after having a few smear tests, they can then see the progression of results over time which will give an indication of how things are going.

    I think I will have to start making teal teddies too! My Mum's operation is soon and there will be a lot of waiting around so I might as well be productive! I hope all goes well for you, you sound like a great support to your sister! I believe that we can make a change! 💕

  • Hi

    I had all the symptoms of OC - loss of appetite, weight loss (was and looked seriously underweight), regular urination, horrible pain at ovulation, change in bowel habit). My first GP correctly spotted the red flags, but sent me for tests on my bowel. I got all the way through to sitting in the hospital discussing having a colonoscopy, but they said they didn't think they'd find anything because I didn't have the classic symptoms of anything that the colonoscopy would pick up. They sent me away with IBS!

    My second GP sent me away after a blood test (not including CA125) saying I was 'a bit anaemic' and it 'wasn't even worth treating'.

    It was another 3 months of me keeping a diary of symptoms when I spotted that the pain coming and going was every 4 weeks and right in between periods. I rang an IBS helpline and asked them about that. They then asked me to talk through all of my symptoms and said 'woah, none of that is consistent with IBS, go back to your doctors'.

    My third GP fortunately agreed that it sounded like ovulation pain. However, she'd recently had two similar cases that turned out to be ovarian cysts and she assumed the same because of my age. She didn't put me on the fast track (despite my 'red flag' symptoms of weight loss and loss of appetite). So I had to wait several weeks for the ultrasound. After the ultrasound it was a whirlwind because it apparently became very obvious that it was serious.

    Whilst recovering from surgery at home my GP rang me and apologised, asking if there was anything at all she could do for me.

    I get that OC is difficult to diagnose. I really do. But my situation shouldn't have been as I had cancer 'red flag' symptoms for months. It should have been standard procedure that I went for bowel and reproductive tests to get me on the right track.

    Looking at some of the other stories on here, again I don't think the 'OC is notoriously difficult to diagnose' is appropriate either. Ok, some situations may be difficult, but seriously, OC type symptoms with a strong family history of OC - that's just shocking. It's a no-brainer that one surely. Even a sniff of an OC symptom should have triggered a blood test and an ultrasound surely.

    Around my diagnosis I noticed that OC was part of an awareness campaign. It seemed a little late for me as I was sat in the oncologist's waiting room at that point. But I didn't feel bitter. I felt relieved because I thought 'brilliant, no one will have to fight for this again'. Boy was I wrong. That was two years ago and it seems that awareness is still wanting.

    I considered writing a blog initially, but wasn't quite sure what I was going to say or what the point of it was. It's striking me that perhaps the point of it is raising awareness again.

  • You should definitely write a blog katfish! I totally agree with everything you said and I'm sad to see that two years later, the awareness is still not really there about OC. Every time I see that my mum is not the only one who got misdiagnosed and got pushed away for so long makes me upset because it's causing so much torment for so many people. I'll have a lot of waiting around to do during my mum's operation; I'm going to have a good think about how we can change this because I know that everyone could suffer a little less if things got caught early. If you do start up the blog, let us know on here! I'll be there to support it!

  • I don't blame you for being bitter. I was misdiagnosed for a year even though I had every symptom and an ultrasound that showed a large shadow. It was my GP (in the USA your primary care physician) on a routine exam who felt my abdomen and said "I don't like this" and sent me for a CT scan. Complete hysterectomy and debulking. Everything was encapsulated in a huge cyst including a tumor with aggressive cells. I was lucky lucky lucky that it was stage 1A but with high grade cells. I did my chemo and tomorrow I'll have my three month scan. The CA125 test is extremely unreliable. Mine was under 12 the entire time except right after surgery when it was 75. Why? Because it rises post abdominal surgery and is affected by so many things. It really only serves as an indicator and to compare from one test to another

  • Good luck for your scan, I hope everything goes well! I guess for some people like you, a blood test isn't reliable but I definitely think that it has to be done in conjunction with an exam like yours was. To think that nothing was done after the ultrasound showed a shadow is irritating but I'm glad that it is in the early stage even if it is high grade. If it is any consolation, the CNS told my mum that chemo works very well against high grade cancers so I really hope that it works well for you.

  • Btw my CA125 was never done until after I started chemo. As far as effectiveness against high grade let me just say "from your mouth to God's ears"

  • I saw 4 medical professionals (3 GP's 1 Gynaecologist) non of them did a CA125. first I was told it was a hernia, then IBS, even my Gynecologist didn't spot it on a scan and told nothing to worry it's just a fibroid. (I have had a fibroid for many years so nothing new)

    My daughters kept saying get a different scan, so I insisted on another scan and this showed a 10cm mass on my ovary which turned out to be grade 3 endonocarcinoma. I was told by my son after my diagnosis that non of them followed the NICE guidelines ie any new abdominal pain over the age of 50 must have a CA125 and abdominal scan. Mine could have been caught earlier with a simple blood test and an ultrasound scan. I still find it hard to come to terms with it.

  • I'm so sorry to hear your story rosann1.it really does sound like they just fob people off once they have a diagnosis. If only doctors could treat each patient as if they were treating their own family; maybe then they would be more attentive. I didn't even know about those NICE guidelines, and I'm sure reading so many ladies stories that their GPs don't know about it either! My mum (and myself actually) find this hard to come to terms with too; you are not alone in this fight, I hope that your treatment is working well and your side effects aren't too bad.

  • Its lovely that you are looking out for your mum, I couldn't of got through this without my daughter, so your mum and me are truly blessed that we both have such caring daughters. I hope your mum's treatment is going well. Please look after yourself too.

    Rxx

  • I had lower abdominal discomfort, acid reflux and tiredness so went to see my GP who immediately did bloods including CA 125. She phoned me at 7 o'clock in the morning when the results came - my reading was around 290. I was sent for scans, vaginal and a CT scan and saw a gynae oncologist within three weeks. The diagnosis was IBS with slow transit. The cure? Eat lots of leafy green vegetables. Now, given a choice, IBS is lesser evil than OC, so I went away and tried to deal with it, although to paraphrase Spike Milligan, I knew I was ill.

    A year later, as I started my long planned, exciting retirement, I found a lump. It was just below my ribs on the left. Back to the GP, who sent me on the emergency pathway but to the gastro intestinal folk. She also wrote to the gynae consultant who said she had referred me correctly. Another scan and more appointments finally led me back to gynae - I knew by then that the word malignant would be in the diagnosis. Sorry, long story short, I have Primary Peritoneal Cancer of Ovarian origin, Stage 3, grade 3. My tumour was on my omentum - I had a CT led biopsy to confirm. Chemo, debulking (not entirely successful), more chemo now, not sure what the future holds.

    The consultants and the GP know I have questions about my diagnosis - nothing was found on the initial scan, but if I had had more CA125 tests, maybe it would have made them look further. I know as well if I had been told that OC could present itself elsewhere, I would have looked sooner. My major concern? My daughters and their daughters - all I can do is remind them to be vigilant and to seek help quickly. I'm remaining positive and fighting hard, although as we all know, it's not easy. I hope every woman on the forum can enjoy Christmas and that the New Year brings good news and advances in the diagnosis and treatment of this ghastly disease. Love to all, Ali x

  • There are things we can all do to help raise awareness along with the charities involved...

    March will soon be here and many women get involved in local events, government, social media or national campaigns etc... It can be at what level suits... It can seem a little scary but there's so much support out there to help anyone with materials, guidance and opportunities.

    Ovacome has a program whereby women who've had OVCA participate in the training of medics.

    Target Ovarian Cancer have an accredited training module for Gps to complete as part of their ongoing development.

    The apps and tools which both Ovacome and Target have freely available are great to help women with a range of symptoms record the extent and frequency and these can be a great help in ensuring women in the future are diagnosed quicker and earlier BUT women need to know about them...

    Sx

  • Thanks Sunfleury, I didn't know about that...I will spread the word!

  • Hi I was lucky in so far as my lovely doctor sent me for the right blood tests and fast tracked me to an oncologist.

    But I went on an awareness day and found so many women sent away from their doctors with diagnosis of IBS or Diverticulisis

    This meant that they were diagnosised at a much later stage when help wasn't always as sucessfull and this really needs to be improved by awareness.

    I feel I need big time to make doctors and female/friends aware of the symptoms because I myself wasn't and so many of my friends still arent

    If you feel the same,spread the word,

    Carole xxx

  • Hell Carole, it's reassuring to hear that your GP was so attentive and informed about this. I've been telling everyone to spreead the word about awareness but I really want to take it to the next level. It's such a shame that women are being misdiagnosed. This needs to change because too many tears are being shed over this terrible disease.

  • I too have Gillys cards and distribute them,it's a good thing and I feel I am doing a bit to help,yes I had good diagnosis,but so many women don't and by giving out these cards makes women aware earlier and hopefully get a earlier diagnosis,with a better outcome.

    If you feel you want to do this, Barlow 1951 has given the details

    Xx

  • When it comes to improving awareness of OC we can all help by distributing the beautifully designed little symptom cards which Gilly49 has been promoting so tirelessly. Go to gillharlerfund.org for more information.

    My GP practice have agreed to distribute them and I am sure if other ladies asked their surgeries would be supportive too. We can also individually give them to friends, work colleagues etc or whoever we know that would benefit from having one.

    For those who don't already know, Gilly was one of 3 finalists on Lorraine recently and from next spring Lorraine is going to make Ovarian Cancer her campaign so we should be hearing a lot more about it as a result.

    Let's all do what we can to increase awareness.

    Best wishes everyone,

    Barbara

  • Hi Barbara, I received Gilly's awareness handbag cards back in the summer. They are beautiful & my daughter in law has given over half of them to local shops. I tried to give them to my old surgery but they were very rude & were not interested so I have changed to a new surgery.

    It took 4 long years for them to find my oc I kept telling them about my family history but it went on deaf ears.

    I keep a envelope full of them in my handbag & give them to taxi drivers, friends, nurses & even put them in some of my Xmas cards. We all are fighting to stay a live & to stop other women from suffering like us. Take care love Cindyxx

  • Hi Cindy,

    Thanks for your reply. You show how much we can do by distributing the cards widely. I am sorry your old surgery was so rude to you but hope your new surgery is much more supportive. I am about to enclose some in my Christmas cards too!

    Look after yourself.

    Love,

    Barbara

  • That's Terrible of your GP surgery to do that, it makes so sense why they did that but I'm glad you voted with your feet and left the surgery. Once I get my hands on them, I am going to spam everyone with them hehe!

  • Hello Barbara, thanks for letting us know...that's great and I'm so happy to hear that Gilly49 and her efforts were recognised by Lorraine. This is wonderful news about awareness, I hope that this new year will mean that more ladies recognise their symptoms earlier and save themselves from unnecessary torment from this cancer. Our GP surgery is a bit militant but I will try to get those cards in there!

  • Yes we have to be proactive about Ovarian Cancer, I understand guidelines for referral have been issued to gps in Ireland and the Uk and the gps have to follow certain protocols now, Awareness is the key so get leaflets from Ovacome or Ovacare as not sure where you live, deliver them to all your local woman groups, libraries and doctors surgeries. The more awareness out there the better. There are more cancers than pink and this is not fully absorbed but we need to show these doctors and women that if they have symptoms for more than three weeks, they need to speak to a doctor and the doctor needs to refer them to a gynae asap.

  • I was lucky and diagnosed early...

    In June I Saw out of hours GP at hospital with pains. I was given antibiotics for diverticulitis. Felt better after a few days so it was about 3 weeks before I followed up with GP to get a proper diagnosis for my travel insurance. Full bloods were done plus ca125 due to symptoms and my age, 54.

    The rest is history and it was all bit of a whirlwind ....

    i was fast tracked as soon as my ca125 results came back two days later at 211.

    Stage 1c grade 1 endometrioid ovarian cancer of left ovary

    Had all my lady bits removed early August together with a cyst the size of an orange which ruptured during surgery so I am now having adjuvant chemotherapy.

    Xx

  • Apologies if this has already been mentioned....

    Part of the purpose of the Survivors Teaching Students programme which Ovacome runs and I volunteer for is to get in early in the medical training of health professionals so that in their future careers they may remember our varied tales if they encounter any woman presenting with similar symptoms. It's rewarding and often fun.

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