ovarian cancer

[wonderif]

can anyone who has been there give me some hope

non diagnosis at present.

waiting on bloods to rule out (i hope)

lots of symptoms link to it so the doc confirmed
swollen stomach
severe back pain
tiredness
pain during intercourse
fertility problems.

i hope and pray that i am not one of the unlucky ones but i cant help but worry

has anyone any experience ? how they got through , symptoms etc

No experience, but wanted to add that these are also symptoms of endometriosis, and its much more likely, statistically. Good luck, waiting for results is horrible. xxx

it could also be caused by fibroid(s)Good Luck x

I think a CA125 blood test combined with a transvaginal ultrasound is the gold standard test.

Good Luck

Hello Wonderif,

sorry you are going through this.
A friend of mine had OC, discovered when she had some ovarian cysts or perhaps fibroids removed...I am not sure which.

She was quite tired when she was going through the surgery and recovery, also she had chemo which was exhausting. But other than that she was Okay.

Fairly stressful and I think it made her anxious for a while after, thinking everything might be a sign that it had come back or such. But it hasn't, it's been a few years now.

I hope that you do not have it but if you do, there is generally a great deal of hope with this type of cancer...it is not one of the worst ones to have xx

There's no gold standard test, Ca 125 can be raised in other ovarian disorders and masses and cysts found on ultrasound can be benign.

I had those symptoms and had endometriosis and benign cyst with (very) raised Ca125.

All the best

Endometriosis is usually diagnosed through a keyhole surgery op called a laparoscopy. CA125 test is not always totally reliable for endometriosis.

Pain during intercourse is also very suggestive of endometriosis.

many thanks for all your replies i had to go lie down pain in back today is crippling!!

the pain is radiating through both hips where as usually on one only.

have to wait until i get results of blood test first i suppose, doctor not saying lots has just said they will phone me towards end of week

very long week ahead.

i am glad to know that it is not all bleak, the last time i had a scan (1/2yrs ago) gyny said that there was a small cyst but it would burst with period.

will keep yous updated really appreciate advice

thanks

Has your dr not 1. referred you to a gynae and 2. arranged a TVS?
The first step is a trans vaginal scan.
Blood tests are secondary- CA125 is raised in 80% of advanced cancer but can be raised in negative cases too for other reasons.

How old are you?

Has your dr examined you?

I am amazed they are doing a blood test first and not a scan.

I'd go straight back and ask for a referral asap, or if you are being seen by a consultant now, why are they not doing a scan?

I have a small ovarian cyst discovered by chance; my gynae scanned me every 3-4 months for a year and took blood every 6 months.

You can have all the symptoms you have for all kinds of other reasons. Have they felt a mass in your abdomen or are they just guessing?
I am sorry but the treatment you are having sounds rubbish.

its funny purplepeony because i had my doubts too, but the doctor said they were doing bloods first to see if anything else showed up.

not sure of all what bloods, but she said she wanted to rule out other things first.

examined my back, blood pressure, chest, felt glands, pressed stomach ( i did feel she took a little longer there but maybe thats normal.

did say i dont mean to alarm you but it could be ov but could also be other things.

Do you think it would be worth my while getting a 2nd opinion or waiting until bloods.

I think you should go back to your dr in the morning and insist that she refers you to a gynae asap and also puts you in the system for a trans vag, scan.

I am truly amazed that at lthe very least she did not do an internal.

Bloods are the very last thing, really, the CA125 is not accurate unless the cancer is very advanced.

What she has done is not acceptable.
O cancer is very rare, especially in women under 50-55, so it is very unlikely that this is what is is- also, pain is the last thing people with it feel. That's why it is so hard to detect.

Go back and be stroppy!

with the pain i am in this evening i might just go to a&e tomorrow.

is it common practice that doctors put the fright into you like this.

now she did mention referral once they got bloods.

oh i am only 33 so i would be less at risk, i had read up on that it was less common on under 50's.

i would really like to know what else she is testing for she mentionned kidneys & spline (i think) hormones, thyroid, sugar ?

sorry- but she sounds crap. If she thinks a blood test will rule out cancer she knows nothing.

No idea what else she is testing you for- you need to ask- it's your body- so find out!
No, it's not common practice. I'd say change your dr too after this is sorted.

Yep thank you i will defo go bk tmr or a&e

purplepeony - I think it is reasonable to do other blood tests to look at other organs within the abdomen that could give rise to those symptoms that wonderif is complaining of - I agree that her symptoms more than warrant a scan +/- gynae referral AND that it's not particulary useful to frighten people when you can not reassure them with prompt investigations - but "she sounds crap" is a bit presumptive -have you had bad experiences with your doctor ??

barth- no I have had great experiences with a wonderful dr who informs me 100% of what is going on, what he's doing and why, and in agreement with me, which is why I think this one sounds crap.
It's not simply the lack of investigations but more the lack of communication. I didn't say that blood tests for other conditions/organs were not needed, what I was daying was that the OP was ill-informed by her dr and that if the tests were simply for ovarian cancer then that was very odd.