I’m a 49 year old mum to 4 kids 19 and under. I have suffered from stomach pains for years and recently it’s been getting a lot worse especially the bloating. There is days i feel so bloated i could burst and have a hot water bottle permanently attached to me.
Anyway, after much nagging from my partner and mum i dragged myself to the doctor who did a full blood test and referred me for an ultrasound scan. My CA 125 came back at 65 and the ultrasound has apparently showed nothing sinister but i have a follow up appointment in September to discuss what is next.
I also had a smear test done and it showed high levels of the HPV virus but no change to cervix cells and a further test in a years time to see if any changes,
I’m probably being overly dramatic but i can’t help worrying that something is wrong as i have this awful feeling something is and it’s just not being picked up.
I will know more when i have my appointment with my doctor in September what the next step is, but it’s hard not to worry especially when you google all your symptoms and read so many horror stories about cancer being missed.
Thanks for reading
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lilysocks
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I'm not an expert and this isn't medical advice. But Ovarian cancer and Cervical cancer are different. Their causes are different and so are their screenings and diagnostic tests.
A smear will not tell you if you have Ovarian Cancer.
Sometimes a blood test looking for CA125 (an Ovarian Cancer tumour marker) is raised. Anything over 35 is considered raised. Sometimes it's not.
A pelvic or trans-vaginal ultrasound could show Ovarian cancer, but sometimes not.
Ovarian cancer is quite hard to diagnose, which is why it's often found late.
Cervical Cancer is different. One of the main causes of Cervical cause is a strain of HPV. It's these HPV strains as well as abnormal cells, that the smear test look for.
So if your smear shows no evidence of Cervical Cancer but your CA125 is raised. I'd ask for more investigations for Ovarian Cancer.
This could be as simple as regular retesting of your ca125, to see if there's a patten of it rising.
Asking for a scan, although this might still come back negative, as a rising ca125 can predate the anything on a scan by 6 month or more.
Or asking for a referral to a specialist gynaecologist.
Don't let it go.
Don't think you are making a fuss.
Don't wait to see if it gets better on it's own. The faster you do something, the better for you and your family.
Thank you very much for replying as i honestly didn’t know all that. My appointment is on the beginning of September to discuss the scan so if she doesn’t suggest anything further then i will certainly insist on it.
Hi Lilysocks, I would second that, ask for a CT scan when you have your appointment as this will show more than an ultrasound. Your bloating could be ascites, which is a common symptom of OC, and a CT scan could confirm this.Please don't Google, the statistics are out of date and will convince you if the worst of everything. I know this is the most worrying time, when you don't know what's going on, but Google will never help! If it is OC, you'll get all the information you need from your doctors and their team.
Good luck 🤞
PS I was 48 when diagnosed, and also mum to 4 kids under 19!
Yeah I'm good thanks. I had 18 months on a maintenance treatment after my surgery and chemo first time round in 2021 and I'm currently towards the end of treatment for my first recurrence. My ca125 has come right back down to 9 which I'm hoping is a really good sign! 🤞
Hello, I agree with the other writers, Lilysocks. If you are uneasy, don't give up until you ask the consultant and get reassurance PLUS testing. Your body knows.
Hello, I agree with the other writers, Lilysocks. If you are uneasy, don't give up until you ask the consultant and get reassurance PLUS testing. Your body knows.
On this website, we have taken an oath to not look at Dr Google! Out of date and the perfect way to worry yourself to despair. Ovacome telephone help line will do you more good. And listen to your doctors. With all good wishes, Emma
please don’t use Dr Google…he’s mor often than not giving inaccurate, out of date data and it’s not worth getting yourself into a state over, if you need any more info, have a look at the reputable charities’ info. Ovacome and Target Ovarian Cancer and the Eve Appeal are all accurate, informative and very helpful. They have support info and you can get in touch with them for advice. I’d also recommend the Symptom Tracker on the Ovacome site, it will help you to chart your symptoms, to print out and take to your appointment in September.
The HPV issue and the cervical test are not linked to ovarian cancer, so it’s highly unlikely that you have two separate gynae issues going on at once. 65 for your CA125 is a little raised but this can happen when you have any hormonal imbalances, even a period, or an infection of any sort.
I don’t mean to make light of your concerns, we all get into a very worried state of mind when we feel that something isn’t right. Once you have more tests or more info in September you’ll hopefully feel more reassured.
Not much to add to what's already been said, but it sounds as if your GP is on the ball, so you may not even have to push for further scan(s). However, do so if she doesn't refer you. You need an explanation for your symptoms, so pursue it until you get some answers. If it's been going on for years it may turn out to be something easier to treat, but until ovarian cancer is ruled out, you should be taken seriously. Sending hugs!
hi, I had a CA125 of 146, I had pain and bloating as well as constant going to the loo. I had scans ultra sounds and examinations, all said there were no problems. They agreed to remove my ovaries as I asked if it may help the pain (I’m a nurse). They agreed to remove them with keyhole surgery. When I was in recovery I was aware my surgery was much more than keyhole only to find they had gone to open surgery because they found tumours on my Fallopian tubes which turned out to be high grade serous carcinoma . They then told me that they think after reviewing my CT scan that they could see the tumour. My advice is, you know your body so keep pushing! Best wishes and hope you get well soon
my recurrence was signalled by a raised ca125, & a small tumour on my bladder was detected by MRI. The sooner the better my dear, & no-one will be cross if you insist on a scan. Just check yr ca125 again first, in case it has normalised
Hi, I am still cancer free after my treatments and surgery for stage 3/4. I was diagnosed in Oct. of 2019. The blood test and ct scan were the things that signaled a problem. I feel so grateful that after everything that I went through I am still NED. 🥰
As others have already advised, ovarian cancer is not picked up by a smear test.
Please make sure you get a scan. In July 2017 my CA125 was 55 & my gynae at that time wasn’t concerned & convinced me to not worry. I asked her if I could have my ovaries out now ( I was being monitored at the time as they suspected something may turn to cancer), but she replied it wasn’t necessary & I needed my ovaries. I so wish I’d been a bit more proactive with having further investigation as a scan in Dec 2017 showed it had turned ( although I ended up chasing up the results of this scan in Jan 2018). Feb 2018 I had my op which showed I was stage 3b ovarian cancer. In July 2017 it may’ve been stage 1 or 2. I can’t turn the clocks back but would recommend you make sure you find out from a scan or more tests that your raised CA125 isn’t caused by ovarian cancer 🤞🏼
Hopefully your raised CA125 level is due to something else ( inflammation or infection etc).
Without wanting to scare you my CA125 was 69 and I had ovarian clear cell carcinoma (I was 49 just turned 50) …. But my ultrasound showed a lot of endo and a tumour on my left ovary. I then had an MRI and CT… both made the diagnosis of cancer more likely! (They can only tell definitively with surgery). Please get them to keep checking things until you establish what it is….. as they say on other forums you have to keep advocating for yourself! I hope it’s not as bad as first imagined for you. xx
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