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Original poster

Ovarian Cancer and fibroids... HELP

22 replies

FiaGrace · 09/05/2010 19:11

I'm wondering if anyone can help or just share their experiences. I definitely have fibroids but have just been tested for ovarian cancer as well. I simply had a blood test for this.

As I understand it, I have to go for a second scan in 8 weeks time but I'm presuming that my GP/hospital will contact me prior to this with the blood test results?

I am seeing my GP this week so will ask questions then but my head is a bit wrecked - I had a largish operation for something totally unrelated, they found complications re my ovaries/womb and I then saw 3 consultants in 30 mins. I had to take in a lot of info.

What questions do I needs to ask?

Anyway thanks in advance.

OP posts:

Pavlov · 09/05/2010 19:19

I do not really have any advice I am afraid, but just wanted to say good luck with the results, and maybe someone else can come on with something more constructive to say x

geekgirl · 09/05/2010 19:19

Hi Fiagrace, they will check your blood for tumour marker CA125 which is very elevated in most cases of OC. The results should be available within a matter of days.
I have to say - if there is any reason to suspect OC, a wait of 8 weeks is utterly unacceptable. With ovarian cancer that could literally be the difference between life and death (sorry to be so blunt), aside from the huge anxiety you must be under. I am really sorry you're going through this, all the best and keep us updated.

thelunar66 · 09/05/2010 19:23

Hello Fia. I am going through a similar thing at the moment. Waiting for first scan/hysteroscopy on Thursday and terrified of what they will find.

I went to the GP two weeks ago because I'd had a period for nearly 4 weeks, although only light. GP told me that her colleague had only been prescribing the wrong HRT to me for the last year!

I don't know what questions to ask either (sorry). But lets keep this bumped so we can both hope someone who does know spots us.

A very unmumsnet-like like

purplepeony · 09/05/2010 19:23

What have they found to make them think you might have ovarian cancer? Do you have a cyst? Has this not been explained to you?

If you have a cyst(s) it is VERY common to do the CA125 blood test just to make sure all is well.

I have a cyst which has been monitored for 2 years. I had scans every 3-4 months nad a blood test every 6 months though they were 99% sure the cyst was benign all that time.

I have to admit that all of this was private treatment and I got the CA125 results within 2 days each time and the results of each scan at the time it was done.

You really need to ask what they have found nad why they are testing you- it could all just be to be on the safe side.

Original poster

FiaGrace · 09/05/2010 19:23

Thank you so much - it's still a bit of a shock to say the least and trying to focus my mind is hard.

geekgirl the DR did mention the CA125 thing. I can only hope that they let me have the result asap.

Thanks

OP posts:

Pavlov · 09/05/2010 19:26

fia if you do not have a result from the blood test within 2 days, call up and chase it. If necessary go there directly and wait til they get it.

Lie geekgirl said. Speed is of the essence, for your health's sake if it is cancer, and also for your own peace of mind if it is not.

Original poster

FiaGrace · 09/05/2010 19:29

thelunar66 thank you so much for sharing your story. I'm sorry you're going through it as well though.

purple I had a scan and it showed the fibroids. I then saw a DR who explained what it meant and so forth. I began to ask questions and he went and got his senior who came and advised that the sonographer (sp) had seen 'something' on my ovary. She rasied it with him very late in the day and so he wasn't able to be called down to scan me again.

He said he had seen the scan reslts but wasn't sure particularly because I haven't had many of the normal symptons. So to be honest, I know very little.

As I said, I was admitted to hosp' as an emergency for something else and it was all discovered as a result of that operation.

Forgive my spelling, I'm lying in bed with laptop trying to type.

OP posts:

Original poster

FiaGrace · 09/05/2010 19:31

pavlov thank you. I will do.

OP posts:

purplepeony · 09/05/2010 20:00

RELAX!

Ther are all kinds of cysts and most are benign.

The CA125 test is only around 50% accurate anyway and only shows a high ( cancer) readng in advanced cases and even then is only 80% accurate.

If they suspect cancer, they should be admitting you for a lap, under an expert gynae or an oncologist-gynae. The BMA has very strict guidlelines about what to do in the case of suspected ovarian cancer. There is no way you should have to wait 8 weeks if they link it is cancer.

was the dr you saw a gynae? Or a surgeon for something else?

You need to cotnact him or his secretary adn ask what they found and what the treatment plan is.

I suspect they saw little- maybe just a "normal" cyst and are following procedure, but you must follow up.

How come you don't know what they found?

purplepeony · 09/05/2010 20:01

p.s the reason for a scan in 8 weeks could well be that most cysts resolve/disappear after 3 cycles. They are very common.
Mine was discovered as part of a gynae MOT- n symptoms. But you must ask for info- if it is small- under 5 cms, it is 98% certain to be benign.

Original poster

FiaGrace · 09/05/2010 20:49

purple thanks so much for all the info.

I saw the top gynae man at the hospital and I also saw a gynae surgeon. I will try and contact him directly this week. I don't know what they found because the gynae Dr didn't know. He simply said the sonographer had raised something ie she thought she'd seen and he was looking into it.

I did ask and ask but that was the answer I was given.

OP posts:

CastleDouglas · 09/05/2010 23:38

Fia,

I had a similar experience to you and I know how scary it can be. Just to echo what Purplepeony said, even when something shows on your scan, there's a very very high chance it's benign. The CA125 test is a rough guide, but it's not that reliable if you've not gone through the menopause.

Disclaimer: I'm not an expert, but I'm being treated by a very helpful gynaecologist.

purplepeony · 10/05/2010 07:34

castle- the CA125 is not reliable even after the menopause- I am post meno and have the CA125 test- due for another one this summer.

OP- I know how worrying it is for you, but it seems unlikely to be serious otherwise you would not have to wait 8 weeks for another scan. Ovarian cancer under the age of 50 is very rare. If they had seen a tumour they would be acting now.

If they ARE worried then this timescale is unacceptable.
You need to talk to your GP or the drs who scanned you to get more information.

purplepeony · 10/05/2010 08:03

p.s.- I think the response from your dr and the sonographer was disgraceful; to leave you in mid air not knowing what they had found.

It is also very unprofessional for the sonographer not to explain to the dr what she had found, and for him not to tell you.

At the very least she should have said a cysyt and size/type of cyst- if she is any good at her job.

She ought to have also told you.

I can only compare your treatment with mine; when I was scanned it was by a very experienced radiologist who told me as he was scanning that he had found a cyst. he then told me hat size etc and that he was not worried but would report to my gynae. I was told what they had found and that although they were not worried I'd be scanned every 3-4 months to see if it changed.

I then got a written report about a week later from my gynae with all the info and a "treatment plan" which they call "watchful waiting." After 3-4 scans over a year I was then told that as far as they could tell the cyst was benign and my scans are now annual.

Each time I am scanned the dr tells me what he has found when he is scanning me,and the size of the cyst compared to how it was last time.

I think you should express your concerns over how you have been left in the dark over this.

Original poster

FiaGrace · 10/05/2010 11:12

Thank you all very much and purple I do agree with you. I'm going to call the hospital and try and get through to someone in the gynae dept.

OP posts:

throckenholt · 10/05/2010 11:51

I would go to talk to the gp. If they suspect OC then they should not be waiting 8 weeks for a second scan.

My mum had it last year - she had her first dose on chemo after about 4 weeks from first suspicion (also from an unrelated operation). She had 3 rounds of chemo, an hysterectomy, and then another 3 rounds of chemo - and has been given all clear (subject to regular scans) at present.

It is very treatable if caught early, and the treatment (for my mum) was a 3 week cycle which did not totally wipe her out (a few bad days here and there admittedly).

By the way - my understanding is that the CA125 is an indicator only, it has to be used in conjunction with scans and other evidence.

Original poster

FiaGrace · 10/05/2010 12:00

throckenholt thank you for the info, I'm glad your Mum is now okay.

I've just called the hospital and spoken to the gynae Consultant's sec'. She is going to ask him to call me back.

OP posts:

throckenholt · 10/05/2010 12:22

good luck and try to keep calm. Best wishes.

Original poster

FiaGrace · 10/05/2010 12:43

Thank you

OP posts:

thelunar66 · 12/05/2010 16:56

Fia... Any news?

purplepeony · 12/05/2010 20:17

bump

choclab · 19/06/2010 09:18

bump

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