How do I cope with the waiting - ovarian cancer scare?

[Jencs1983]

Hi all, and thanks for reading.

I am 40 years old and live near Manchester (if this helps at all?).

To cut a long story short, I presented to my GP in July because of a very erratic period (heavy, prolonged and huge blood clots). She immediately arranged an ultrasound scan that revealed a 15cm x 10cm ovarian cyst. The sonographer described it as a "sizeable, simple cyst". She said it didn't look sinister, so I wasn't too worried.

Fast forward to now, following a normal CA125 result, my GP referred me to Gynaecology, and in view of the size of the cyst, Gynaecology asked me to have a pelvic MRI (which I had two weeks ago today) and 3 other blood tests that are apparently to check for tumour markers.

I've not received any of the recent test results, and tomorrow's gynaecology appointment has been postponed until 19th October due to the strikes.

My question is, how do I not worry until then? I've been so stressed since I've been having all these tests and scans, and I was hoping to find some tips to calm me down?

My partner, friends and family think I'm overreacting, so I don't feel I can confide in them anymore.

I'm a bit of a "googler" which definitely hasn't helped my anxiety, so I'm trying to stay off there now.

The only thing that helps is drinking wine in the evening, but obviously I can't carry on doing that?

Any advice would be gratefully accepted.

Thanks.

Well it sounds like they're leaving no stone unturned to be sure it's "just" a cyst.
Which makes perfect sense as ovarian cancer is hard to detect and often it's too late when it's found.

As your Ca125 was normal I would suggest this is a "belt and braces" approach that's being taken and try not to worry. I don't think your appointment would have been delayed if you were ill, you'd have been called back straight away. As happened with a friend of a friend last week.

I agree that you would have been called back if there was a real concern.
It's very hard not to worry of course, but the likelihood of anything sinister seems quite remote.
Think of it this way - you don't have any diagnosis except for a cyst which is easily treatable, so no need to worry about something that probably won't happen.

Have the results been shared with your doctor?

God this is terrifying can you advise if you had any back pain?

I am also going through a similar scenario so I feel your pain

Even more worried now that someone said ovarian cancer is hard to detect

sorry not much help

Sending support your way OP xx

@Quitelikeit ovarian cancer isn't 'hard to detect' at all. It's perfectly detectable.

However, what the previous poster probably means, is that the symptoms of OC are easy to ignore and put down to something else as they can be vague and hard to pin down. There is sometimes little in the way of symptoms until the disease is quite far advanced

OC is rare in women before the menopause. That's not to say it doesn't happen, it does. However it's rather unlikely to be OC OP due to the feedback you've had already. You're being treated in this way by the hospital because it's a large cyst so a belt and braces approach is being applied in all likelihood.

To be fair, they have been excellent, as I know some women wait for ages for tests and scans. I've been very lucky.

Thank you so much for your reply. I am very grateful, and I think you are right in saying that if there was something wrong, they wouldn't wait an extra month to see me.

I agree with you. Thank you so much for your reply. It meant a lot to me and has put my mind at ease a bit.

I spoke to my GP on Monday just gone about an unrelated matter. I asked if she'd received any results from gynaecology, but she hasn't as yet.

Thanks for your reply.

Aw, I'm really sorry if I've furthered your worry. It is such a horrible thing to go through, isn't it?

As for back pain, I get lower back pain when I walk outside, but as soon as I rest, the pain goes.

I'm overweight and I've had this pain for a few years now, so I don't think it's cancer related?

I hope this helps and thanks for your reply.

Thank you so much. This means a lot to me.

Thanks for your reply.

I've no real symptoms of OC, and I've read that OC symptoms are very much like IBS and other benign conditions.

Thanks for your reassuring message. I am very grateful to you.

Your CA125 is normal and the sonographer seems confident it's a cyst. They know what they are looking for and you should be reassurred by both of these.
It is indeed belt and braces.

I'm slightly the other way round. Ultrasound normal and CT scan normal but CA125 raised. I've been waiting since July but have my gynae appt next week.

Yes, I need to stop overreacting. I'm just the sort of person who worries so much about health anxiety. I was diagnosed with Epilepsy when I was 8 and type 1 Diabetes when I was 15, so I think it stems from that. But you are right - everything points to this being benign.

I am sorry to hear what you are going through. I hear the CA125 test isn't all that reliable and can be high for other reasons, other than cancer. I guess the only real way to tell is biopsies.

Thanks for your reply.

Sending hugs your way . It's normal to worry - you get anxious, you play it down, then you worry about stuff etc etc. you. Oils always ask your Dr surgery later in week if results are through due to Appt being cancelled with no date for a while ?

I was worried about OC - my Mum and a really dear friend both died from it. I get the worry .

Try to stay off Google - it's hard - friends and relatives probably mean well but aren't always the most helpful/understanding - my brother hasn't really acknowledged my BC diagnosis earlier this year - I think he thinks because I sound like normal, look like normal when he sees me that I'm ok and it isn't serious .

Hoping you get positive news soon - if not I can honestly say from my own experience that the initial waiting was the worst period.

I agree with previous posters that if the had any concerns they would move quicker.
4 years ago I was diagnosed with stage 1 ovarian cancer, which was found while having an MRI scan for something else.
I had paid for a private scan as my GP wouldn't refer me.
From having the scan to major abdominal surgery was 5 weeks.
I had a complete hysterectomy and had a tumor removed that weighed 50lb!!

Thank you so much for your reply.

I am so sorry to hear about your health. How are you doing, if you don't mind me asking?

I've heard lots of people saying that the not knowing is the worst bit. I have managed to stay off Google the past few days, but my mind keeps forwarding on to the day of my appointment, and imagining the Gynaecologist saying that they suspect cancer. I know the odds are in my favour of the cyst being benign. But my mind remains in overdrive.

I am so very grateful for your reply and the other replies too.

Hi, I just wanted to get back to you after I had a letter from gynaecology earlier on.

The MRI showed that my cyst is 16x15.7x10cm, so it's very big, but it looks benign and my blood tests were normal.

However, the scan also revealed that my bowel, uterus and left ovary are attached, so they suspect endometriosis.

I'm obviously very relieved and thought you'd might benefit from quite a positive story?

Fingers crossed that you get similar news, or even more positive news 💐

@Jencs1983 can I just ask if any of reports described the wall of the cyst or anything to do with vascularity?

Diagnosed with 4.9cm cyst myself. Simple and thin walled so looks like follicular cyst, but I'm having monthly pain with it from mid cycle to start of period so I'm wondering if it's endometriosis. Wondering if endometriomas ever look simple and thin walled.

Glad it was ' ok'

Endo is hard

I have abnormal ca124

They still dunno why

Had a transvaginal scan in July - just found fred the little fibroid

I have NAFLD :(
Maybe linked with ebv last year

Awaiting 2nd MRI result.
And biwel polyp biopsy results

Typo ca125 **

All I have been told is that the cyst doesn't appear cancerous.

And as for the endo, I don't have any pain or anything like that.

I hope you get some more answers soon, and hopefully they can manage your pain.

I'm keeping my fingers crossed for you, as I know how horrible the waiting and worrying is.

What was your CA125 result, if you don't mind me asking?

Its varied
Its been tested multiple times

Its been 50 something

And 70 something

Etc

Had transvaginal scan to rule out ovarian cancer