How was your Ovarian cancer diagnosed?

[EmmaS1980]

So, I'm 42 and have been on waiting list for nearly 12 months having been diagnosed with multiple fibroids.

My GP recently ordered an ultrasound for me, to see if I could get in the 2 week pathway - as my FBC showed elevated levels of CA125.

My ultrasound showed 2 small cysts on ovaries and some 'echos' originating from ovaries themselves. Consequently, my GP put me on the 2 week referral pathway to see an oncologist gynae.

So the Women's Hospital phoned me today with a appointment, to get another ultrasound and see a normal Gynae. I asked why I wasn't seeing an oncologist gynae and they said 'the consultants didn't believe your recent scan /CA125 levels gave cause for cancer concern' - something to that effect.

I'm pretty pissed as I don't know why I'm having another ultrasound within such a very short space of time, and how they could tell I don't have suspected ovarian cancer - just off the ultrasound alone?

Surely they need to do a biopsy or an MRI?

So my question is, what was the very first point at which suspected ovarian cancer arose for you, and what diagnostics were user to get a definitive diagnosis?

I feel like they're fobbing me off to be honest.

Thanks for any advice or experiencesyou can offer ☺️

[nordic5]

Transvaginal US and CT first, with elevated CA-125 is enough to decide about next step

[EmmaS1980 in reply to nordic5]

Is enough to decide no suspected cancer you mean?

[nordic5 in reply to EmmaS1980]

I mean to decide when the biopsy or surgery is necessary. Sometimes corect diagnosis can be made after surgery. But we have nothing better than good tomography or MRI, good transvaginal US (transabdominal can be not enough to reach the goal).

[EmmaS1980 in reply to nordic5]

Yeh I had the transvaginal US and CA125 was 52. Just seems - far too casual a diagnosis. Thought they'd at least do an MRI surely?

[Schnauzer19]

Hi. My cancer wasn’t detected on any ultrasound scans or CA125 tests. I had no idea I had it until an operation to remove a simple ovarian cyst where they removed my ovaries and fallopian tubes in the process. Even the surgeon said everything looked healthy when she removed it all. So you can imagine my shock/horror when histology results came back 2 weeks later that my right ovary (the one without the cyst) tested positive for HGSOC. I waited a year for my operation as it wasn’t classed as a priority as nothing sinister seen on scans and CA125 was only 10 and due to backlog from pandemic 😩. Hopefully you will be fine but thought I’d share my story as things aren’t always detected in scans if they are small, as mine was, only 4mm. Good luck and please let us know how you get on.

[EmmaS1980 in reply to Schnauzer19]

No way, that's scary! So you didn't know you had it until a histology was carried out anyway on the back of removing your ovaries?! Do you mind me asking how come you needed your ovaries and tubes removing?

What was only 4mm - the cysts?

I feel like they're not taking it seriously 😟

[Schnauzer19 in reply to EmmaS1980]

No I didn’t know. My ovaries and tubes were removed because the cyst I had had started to grow bigger, I didn’t have any symptoms apart from weeing alot, but I’ve always been like that so didn’t think it was out of the ordinary. The cancerous tumour was only 4mm and was on the other supposedly healthy ovary that didn’t have a cyst, the cyst was benign. So if it hadn’t have been for the cyst I would be none the wiser now 😩.

[Realistic in reply to Schnauzer19]

A very good warning to others, to be proactive ask questions were all important so get 2nd opinions if necessary. But dont delay cancer won't wait. SheilaFxxx

[NewtonEmma1900]

I was late going to the GP as could not get an appt. Then tummy swelled rapidly and chronic pain, so requested an urgent appt. GP requested transvaginal ultrasound and ct scan and did blood tests. I had a date for the appts quite quickly but I had to wait nearly 3 weeks. By then I was in so much pain I paid to have them done at a private hospital, it was the best almost £2000 I have ever spent. The ct scan done I then had the ultrasound. I was told to go to A and E straight away. which I did: I was diagnosed within 24 hrs. Confirmed by biopsy a week later.

Regrets: I should have gone to the GP sooner and she should have send me directly to A and E. Katy

[Fluffyjumper]

Hi EmmaS1980

The ‘usual’ route is CA125 blood test and transvaginal ultrasound. If there are concerns then a CT scan with contrast is done. Those tests indicate whether there is a ‘suspicious’ growth and whether surgery is required. Ovarian cysts can be simple or complex (with compartments, solid areas, blood supply etc). Very often it is difficult to tell whether or not a cyst is benign from ultrasound. Some women have a biopsy, I had full surgery. Any cancer, including type and stage is usually diagnosed with histology after biopsy or surgery.

My case was discussed at a multi disciplinary team at a major cancer centre but dealt with at my local hospital by a gynaecological surgeon and not a gynaecological oncologist. I would have preferred to have had my surgery at the cancer centre.

[EmmaS1980]

Thanks for your reply.

So what, the transvaginal US I had, coupled with elevated CA125 doesn't warrant suspected cancer? I hewr US 's are not reliable for diagnosis and a CT/MRI is required?

I just feel like they've reached a very casual conclusion.

And to add insult to injury, they want me to have an abdominal US again, only after 4 weeks of having a TV US!?

I just don't get it.

[delia2]

Hi. I’m in the US so it’s a bit different but the protocols for diagnosis are the same. The next step would be a CT with contrast. It’s very common for women to be fobbed off so you do have to be your own advocate. Maybe they want to see if there’s any change in the cysts before going to the next step. It’s not bad to have another ultrasound. They may be able to get a better look.

[GoldieH]

Hello Emma

I’m sorry to hear you are having a difficult time. Sadly it seems that we have to really advocate for ourselves and push for tests etc. I would push for a CT scan if you can, as ultra sound not as accurate. I’m sure you know but CA 125 can be raised for many reasons other than cancer.

I completely understand how stressful and scary it all feels and I hope you have some accurate info soon. Sending positivity. Laura

[Ruebacelle]

I had terrible lower back pain with abdominal discomfort in 2014 diagnosed as IBS. It continued and finally in 2015 saw obgyn who immediately ordered an MRI subsequent biopsies of cysts diagnosed w stage 3c ovarian cancer started chemo in Oct of 2015. I fault my internist who is a breast cancer survivor for not ruling out ovarian cancer. Had 1 year of remission several ops and chemo continues to this day and will be continued until I die.

[Summergold2]

Your health your body get a ct scan with and without contrast the earlier the better this is an awful disease

[carrotmunch5]

I am so sorry you are having challenging time with your diagnosis. I didn't get diagnosed until I was admitted hospital with chesty cough caused by blood clots in my both lungs and fatigue. I was really ill. Started off with, I had virginal discharge for about 6 months. I didn think nothing of it, then started having cough badly with fatigue. It was so bad I went to see GP and gave me antibiotics but didn clear, got worse. Back to GP, and he gave another antibiotic then sent me for bloods. He rung me with results, told me to see his colleague GP that evening. I explained this GP why I might be anemiac. ( Discharge)he sent me another blood test and ordered CT scan for three weeks time. Then that Friday night couldn't breathe, ended up in A&E. Following morning (A&E doctor forwarded my CT) went for CT. They found out I had blood clots in my lungs. Ended up in hospital for 7 days. Highper calcemia never went down. They sent me another CT scan for abdominal area. Then found out I had clear cell Stage 3b OC. I was shocked but it all made sense. Really long winded but I am sure I am not the only one. Hope you can get yours diagnosed soon.

[carrotmunch5]

I am so sorry you are having challenging time with your diagnosis. I didn't get diagnosed until I was admitted hospital with chesty cough caused by blood clots in my both lungs and fatigue. I was really ill. Started off with, I had virginal discharge for about 6 months. I didn think nothing of it, then started having cough badly with fatigue. It was so bad I went to see GP and gave me antibiotics but didn clear, got worse. Back to GP, and he gave another antibiotic then sent me for bloods. He rung me with results, told me to see his colleague GP that evening. I explained this GP why I might be anemiac. ( Discharge)he sent me another blood test and ordered CT scan for three weeks time. Then that Friday night couldn't breathe, ended up in A&E. Following morning (A&E doctor forwarded my CT) went for CT. They found out I had blood clots in my lungs. Ended up in hospital for 7 days. Highper calcemia never went down. They sent me another CT scan for abdominal area. Then found out I had clear cell Stage 3b OC. I was shocked but it all made sense. Really long winded but I am sure I am not the only one. Hope you can get yours diagnosed soon.

[SopSinger]

Assuming you are in the UK, NICE guidelines state that any patient with a CA125 over 35 and suspicious ultrasound findings should be referred on the 2-week pathway. They can't be sure it's "not cancer" without further tests - CT and/or MRI. Your hospital is not complying with those guidelines. If there is a major cancer centre not too far from you (e.g. Royal Marsden in London, Christie in Manchester, Velindre in Cardiff), you can ask to be referred there.

[Jennifer1959]

Hello Emma - for me I had some vague abdominal symptoms - bloating and pain and thought it was some sort of tummy bug. GP felt a large mass in my abdomen and her thinking was - it could be a fibroid - but it 'could be serious'. I recall her pausing before she did my referral (CT scan or Ultrasound) - she opted for CT scan and I was put on the two week pathway. The growth was huge 27 cms at the time. My process was more straightforward as the tumour had to be removed - no question. I do hear some ladies who experience problems like yourself and the best advice I always read is - be your own advocate. From what I have read about CA125 levels - all sorts of things can raise them. I think it depends upon how long you have to wait for this appointment. I dont' think it does any harm to ask your GP again about your concerns and about the process to rule out anything worrying. I always recall my GP saying - they like to rule things out. Please take care of yourself x