Study results published today

[ShazD]

Makes interesting reading for all those women like me who were never offered a ca 125?and feel they were not listened to or taken seriously.

[harpist_UK]

You can read the whole report on Target Ovarian Cancer's website - follow the link and you can download it at the bottom of the web page - targetovariancancer.org.uk/...

[Lou53 in reply to harpist_UK]

There are over 10,000 members of this forum. If we all emailed our MP's in support of this campaign it might start to create the level of debate that we need to push for real change. We cannot change what has already happened for each of us but we may be able to improve the experience for women coming after us so that they are more likely to know about ovarian cancer and to get earlier diagnosis and treatment.

[harpist_UK in reply to Lou53]

Hard to believe, but I contacted my MP about participating in one of Target's previous parliamentary campaigns, and he said he would find it difficult as his mother had had ovarian cancer. I had thought it would have had the opposite effect ....

[Lou53 in reply to harpist_UK]

Absolutely shocking! I agree you would think he would want for other women to not go through what his mum had. But aside from that he should be responding to you as his constituent- after all it's a job he is paid very well for out of the public purse... X

[Lou53 in reply to Lou53]

So I emailed my MP from my phone last night, 5 minute job. By 10am this morning she had replied to say she has written to the secretary of state to ask what is being done to improve ovarian cancer diagnosis and will get back to me with their response! So, not all MP's are slackers... or does it just take a woman to get the job done 😉 😀

[Coldethyl]

It’s a tricky one as the symptoms are very similar to lots of benign ailments and oc is not common - I knew them and still didn’t connect the dots so getting women to the GP sooner needs working on -what’s more shocking is the lack of awareness amongst doctors - that just shouldn’t be the case - there’s a difference between a doctor judging it as unlikely and not even thinking about it in first place! Really we need a co- ordinated national awareness and screening programme -though the CA125 isn’t best test it’s all we’ve got and at risk women would certainly benefit from regular monitoring even if you factor in false positives - mammograms aren’t 100 % accurate either but that isn’t seen as a reason not to bother and women accept they may be recalled for nothing. In my own case regular testing would have picked up the malignant changes in my endometriosis before I got to stage 3

[MartaCiom]

Hi. I think UK falls behind with regards to prevention. You see gynaecologist when you are pregant if you have complications or if you already have symptoms. As we have smear tests we should be offered transvaginal usg every 2 years. I come from Poland and its a standard practice for women to attend gynaecologist once per year. I have failed myself by not going to see dr whikst abroad. The outcome could have been earlier detection, less invasive treatment not mentioning reduction of stress. X

[Lou53]

I just googled my MP and emailed her to ask what she might do to support this campaign. Anyone else got 5 minutes to do the same?

It beats lying awake dreading tomorrow's chemo...

Louise X

[CJR99 in reply to Lou53]

Hi Lou

Will contact mine on Monday😘👍xx

[Lou53 in reply to CJR99]

Fantastic 😁👍

[Maus123]

Good find, thanks.

Well it's a start. Ideally, I'd like to see a quick referral for an ultrasound exam (transvaginal and abdominal), a ca125 blood check and, where that's inconclusive, a CT scan.. all within 2 weeks of the complaints. Yes it might be IBS, but we won't know until more extensive tests have been conducted. Maus

[Hidden]

When I went to see my doctor because I was concerned about severe pelvic pain, after a quick examination she gave me two weeks antibiotics, and told me to go back when completed the course, when I went to see her again I asked if it could be cancer and she said no more likely to be diverticulitis or IBS, not convinced I asked for a CA125 blood test ( i had been googling) she agreed and when it came back in the thousands she referred me to a gastroenterologist because I was having bowel symptoms as well by that time. I wasted a lot of time with the wrong consultants before finally being diagnosed, the medical profession need to start taking women seriously, my doctor assured me that from that day on the surgery were going to offer CA125 blood tests as first line, too late for me but maybe some good came out of my predicament. I will certainly be writing to my MP. Lyn x

[coksd in reply to Hidden]

This is awful - you even asked for the blood test and it came back that high and they still sent you on the wrong path. I was sick for 2 years and when I was actually diagnosed I requested all my medical notes under the data protection Act from my GP its unbelievable I had to retrace for myself how this happened the pattern of events that led to stage 4 diagnosis. how they don't know this stuff even now if I have an issues regarding my cancer its a waste going to the GP as he knows nothing. There should be nearly a booklet given out to ladies after they have babies or even have sufficient info available for GPs. I never would have thought ovarian cancer could happen in my situation I had 3 kids from 2009-2014 and breastfed them all. Is there a cost issue with this blood test or why is it not openly discussed or advised of.

[ShazD]

Yes I think now is a good time to write to our MPs.

[Lou53]

I'll let you all know what my MP comes back with. Thanks for posting this Shaz.

[TarbonNZ]

I thought NZ was the worst, but I now realise it is the same old story worldwide. It is a common discussion point in the online Ovarian cancer support group here, and the fact that there is still no testing process (appart from CA125 as an outcome of symptoms) which can detect this. It is all hit and miss, and is why in the majority of cases it is advanced when finally identified.

[coksd]

The amount of fights I have had with nurses, lab staff and doctors over this test, I think it should be carried out prior to treatment and I successfully demanded it every 3 weeks and even when it was rising they were determined to keep me on avastin. Avastin is a great drug if it works but also has bad side effects and should not be used if not of benefit to the patient. Due to it rising 3 times I got a scan but had no symptoms the doctors were looking for swelling of ankles, wrists asking if bowel motions were ok and no bleeding. I had no symptoms yet CA 125 rose and then the ct scan showed disease progression. They took me off avastin and now awaiting a decision on been deemed platinum resistant to be over ruled at local hospital after second opinion otherwise I have to travel 5 hour round trip for treatment.

[delia2]

Hi. I'm in the US and was not given a CA 125 test until after preliminary diagnosis. My GP blew off my symptoms so I found a gynecologist on my own who ordered an ultrasound but it took a month to get the test.

[MostlyHarmless]

I had been going to my doctor with problems for eighteen months before ending up in hospital last November. They blamed it on my age (in my 50s).I had been in A&E with chest and abdominal pain in October and was sent home to await a cardio appt! The discharge letter from A&E says 'I am not sure what caused this pain - possibly gastroenterological?' I will never know how much difference the delay meant. All I know is I am stage 4a and inoperable. Strangely enough the health dept at work put out leaflets about the signs of ovarian cancer the week before I was diagnosed so I had just enough time to think 'that sounds like me'.

[koffeekat99]

It's sad that it doesn't feel like things have changed since I was diagnosed four years ago. I was diagnosed in the middle of a campaign to raise awareness of OC. I remember sitting in the GP surgery reading the leaflet for OC and thinking "Hmmm, sounds familiar". Despite that campaign, and me being able to list big red flag symptoms, I was still fobbed off with a variety of daft comments because I was "too young for cancer". One of the GPs told me I was just a bit anaemic and it wasn't worth treating me. A few weeks later, when I was finally in the correct process, I had the first of two iron infusions.

I believe that my GP surgery now take all women with abdominal symptoms more seriously as a result of my diagnosis, and I got an apology from the GP. But that is just one practice who learnt from experience. Other practices really shouldn't need to wait until someone is misdiagnosed to learn from the experience.

Wherever I have the opportunity I say to people that any unexplained abdominal symptoms cannot be put down to IBS until all possibilities have been explored, i.e. you can't do just the bowel tests, you have to consider the reproductive system too. And really, red flag symptoms should be considered seriously regardless of your age. They're blooming well red flag symptoms for a reason!!!

So is this part of a current campaign with Target OC? It sounds like we are writing to our MPs. Is there a particular thing we are asking for, i.e. an upcoming vote on something, or is it general awareness raising?

[Lou53 in reply to koffeekat99]

I think it's a general campaign and I just emailed my MP because it's an easy action to take and I think it could be very effective if everyone on this forum did it with any opportunity we can. I believe no change will happen for OC without prodding the political machine to get some attention paid to it. I think we still have a lot to learn from the movement of women, their friends and families that pushed for and got change with breast cancer in the UK - survival rates, awareness and early detection have significantly improved for breast cancer because of their actions. X

[koffeekat99 in reply to Lou53]

That is a good point. I’ve recently been looking at breast cancer info on treatments, stats, etc. (Family member diagnosed and I am the appointed person to find out about all health related matters to help to explain things across the family!)

I was astounded at the difference across the board and the vast improvements made around breast cancer in the last 10 years, 20 years and 30 years.

I think it demonstrates that the investment does give results.

I’m thinking I need to sit down and put some stats together for my MP if they havent already been done. MPs like tangible figures that show that things can improve.

[Lou53 in reply to koffeekat99]

Brilliant. If you do a comparison please share and I'll use that to inform my MP as well. Thanks, Louise x

[RonLitBer]

I am aware that there are young women and even children that get ovarian cancer but the fact is that ovarian cancer and all cancers are a disease of aging. Perhaps that should be factored into testing. I think that symptoms are so much like all kinds of other ailments that it is really hard for women to think ovarian cancer as their first thought. That is precisely why other things need to be put into place to regularly check for ovarian cancer. I agree with those who have stated that ultrasounds and CA125 tests should be done even though they are not 100% accurate, a follow up CT can always be scheduled if needed. Physicians being clueless is another issues entirely and the fact that I was told to get over the counter medicine for loose bowels without any tests being ordered is just tragic. I wonder how many women the doctor I went to has steered in the wrong direction without even considering ovarian cancer as a factor.

[thehusband]

I have always been an advocate of routing CA125 tests and believe 100% that they will catch some cases of OC early.....I accept that there could be some false positives but its hard to imagine anyone feeling annoyed at having a false positive, albeit of course it would be an upsetting few days to 'prove it false'.

In the case of my wife the first visit to A & E was diagnosed as probable urine infection and anti-biotics prescribed. A week later with symptoms still the same - new anti-biotics subscribed....then say a week later another Doc gave an internal, something found, ultra sound arranged - then a CA125 test showed a reading in the '000's.

I totally understand that more than likely when someone presents with something it is not going to be cancer....BUT, sadly sometimes it is.

If my wife had been given a CA125 test when she first went to A & E - in all honesty the few weeks early probable diagnosis wouldn't have IMO changed the ultimate outcome. But that said, for some if they were given tests annually and then again any time they presented with 'possible urine infections etc' -

then back to where I opened, I am 100% positive we would catch cases earlier. I really can only seem positives in doing this, or at least being asked if someone wanted that test..... IMO its just crazy that it isn't done. Whilst its not by any means fool proof - its the best thing we currently have as an early warning tool!

[ShazD]

And perhaps we should be asking for a root cause analysis to be completed as standard practice in all patients diagnosed with ovarian cancer. In our stop the pressure campaigns we made all pressure ulcers reportable and it has changed practice. If we looked at something similar for ovarian cancer medics may change the way they assess patients with these 'vague symptoms'

[bamboo89]

It's not just GPs that don't pick up or check on the symptoms - I saw a gynaecologist and had a hysteroscopy 2 years before my diagnosis checking because I'd had dodgy cells on a smear that were not of cervical origin. They found nothing and said I should 'wait for a bleed' and then they'd do a hysterectomy - when I asked if it could be the ovaries or tubes, a resounding no was the answer. I then got referred back to the same bloke two years later (now a year ago) with a swollen inguinal lymph node. He did an internal exam and told me he wasn't in the last worried that it was anything sinister - CA125 was 91 and had fallen to 86 two weeks later, so 'nothing wrong with the ovaries'. Had to wait 5 weeks for a US, despite my GP marking it urgent; the doctor who did that immediately followed up with a CT that evening, and I had a biopsy of the lymph node 7 days later. But it took almost three months to find out what the biopsies showed, and only then did I find out because I threatened legal action if it was cancer. Apparently, my local hospital had sent the samples through to the Marsden because they couldn't believe the results they were seeing, and the Marsden took 9 weeks to respond. Obviously, it was OC - epithelial serous ovarian which had differentiated into small cell neuroendocrine (very rare in the ovaries) and stage 4b. So much for seeing a gynaecologist... Makes you wonder how effective the CA125 is at all, given I had a 5cm tumour in the pelvis, cancerous ovaries and cancer in a lymph node with spots on the lower bowel and omentum, and the CA125 at its highest was only 91... I can't help wondering if I'd insisted on a full hysterectomy 3 years ago, including whipping out the ovaries, whether I would not now be in this position...

We need more awareness, and we need new tests... I'm surprised it says in that article that OC is the sixth biggest cause of cancer death - I thought it was the eighth, but perhaps its the eighth worldwide...

[ShazD]

I agree. I went to a gynae oncologist in harley street and he did not even perform a ca 125 and discharged me from his care wothout an examination and a scan which completely contradicted my nhs scan which showed growths on my ovaries . I was diagnosed with 3 c 3 months later. complained about my care and have been referred to counselling to deal with my anger issues as I have been told my cancer must not have been there and was so aggressive that it grew in 3 months. To try and cover up he lied on his notes saying I had collapsed just before seeing him when in fact i had collapsed 3.5 months before that so if he had scanned me in the right place he would have found it. The way I was treated by him is disgusting and I think it should be highlighted that it is not just gps but gynae specialists who are providing poor care and delaying oc diagnosis by failing to listen or take seriously patients presenting symptoms.

[bamboo89 in reply to ShazD]

Well that's extraordinary- I was annoyed that only some gynaecological consultants are also oncologists, but it sounds like even a gynae/onco is no greater guarantee of accuracy. My gynae was under the NHS, but I suspect, like every other field in life, 15% of those in whatever field are brilliant, 15% are very poor and there's a range in between of mediocre to good, where how well you're served or treated is almost luck of the draw. And that applies to hairdressers, gardeners, builders, osteopaths, doctors (NHS or private) and so on... dump the anger if you can, work it out, because whilst entirely understandable, its not healthy for you, its excess baggage you don't need to carry round with you.

[Lollie2016]

Thanks for posting this . I had to wait 9 months for my own diagnosis after having seen 11 different GPs and specialists .

[Lollie2016]

It’s absolutely disgusting how many doctors out there don’t still understand the text book symptoms for OVCA . To fail ordering a CA125 and scan is unforgivable at this day and age.

With my own text book symptoms, my private GP in W1 (where I saw 3 different doctors) told me that I was imagining my symptoms.

I also waited 5hours in and a&e explaining that I had fluid floating around in my pelvis but was told there was nothing wrong with me and that I should return to my Gp ( the GP that failed to diagnose me for months).

It was only from my own determination that I managed to get a diagnosis in the end with the 11 th doctor.