Ovarian cancer ?

[Shelleykins]

Hi had severe pain in back stomach top of groin been tested for ovarian cancer had .ca bloodtest results back today all they would say was they were normal at the same time since had the pain had no periods for four months I'm 45 no signs of menopause. Had the transvagarinal scan they couldn't see my ovaries so gp made me have the .ca bloodtest results were normal but very vague telling me anything else got to have ct contrast scan can blood results come back normal but could still have oc. Got results for .ca bloodtest it was 9

[RonLitBer]

Yes in answer to your question. I am stage 4 and my CA125 has never been higher than 178. My surgical oncologist said it should have been in the thousands after she opened me up for my surgery. As well, on 2nd line treatment my CA125 was well into the normal range. I think it was 13 but I had several remaining tumours. It is not an accurate marker which is one of the reasons it is not a standard test and why we often get diagnosed in later stages of the disease. There are no reliable tests that are available for OC at this time. I would have the CT scan.

[Shelleykins in reply to RonLitBer]

Yes I am on 16th July could this be the reason I haven't had a period for 4 months

[RonLitBer in reply to Shelleykins]

That is a long time to wait. Is there any way you can get it sooner? Perhaps by going to a different hospital. My family doctor managed to get me a CT scan quite quickly by calling around and putting me on some kind of "urgent" list in case of cancellations. It was possibly because they could see tumours via an ultrasound prior to the CT. I am sorry but I can't speak to the lack of periods, perhaps someone else has had experience in that regard. Part of the anxiety is having to wait for tests and then even after the test having to wait for results. I also think I have read on various lists that even with a CT scan sometimes disease is not visible even though it is there. This is not intended to add to your stress but provide my own experience with the disease and its diagnosis (or lack thereof). I would keep pursuing it and not allow the medical system/personnel to dismiss you. It happens so often that we are put off as symptoms are vague and mimic other ailments. I was originally told to take over the counter medication for loose bowels and then told it might be irritable bowel syndrome even with 2 protruding lymph nodes in my groin area. These pronouncements were made by physicians. There just seems to be a general lack of knowledge even in the medical community with respect to OC.

[Shelleykins in reply to RonLitBer]

Thank u gp has me on ora morp for the pain will try speak to my gp Wed when his back in the surgery yes it's worrying not knowing what is goin on especially not being able to see my ovaries on both ultrasounds tests said had I had them removed that's why doc sending me for ct contrast scan and got to have bloodtest three days before scan

[Maus123]

Hi Shelley. The first thing I would say is not to panic, as so far the tests have not indicated ovarian cancer. At the same time though, having a contrast CT scan might give you much needed peace of mind and the chance to spot anything the other tests have missed. If you can get the insurance to pay for it, that might be an option.

One can be afflicted by OC without a raised ca125 blood value. Although mine was through the roof when I was diagnosed (4500+).

Hope you will receive clarity on your symptoms soon. Maus

[Shelleykins in reply to Maus123]

Thank you I'm having the c.t scan on 16th July so not to long to wait and repeated transvagarinal scan as they couldn't see my ovaries at all and had no periods for four months since had the pain

[mrstadpole in reply to Shelleykins]

I had a transvaginal scan and was told everything was normal. Then a scan was booked for 5 weeks later. In the meantime I was in quite a lot of pain. I went to A&E they gave me a scan, admitted me and then I had the diagnosis of OC. My oncologist said it doesn't show in the ovaries( but they couldn't find mine anyway).They think mine started in the fallopian tube. Hope all goes well for you and that you have a lesser diagnosis xx

[Shelleykins in reply to mrstadpole]

I had coloncopy of the bowel on Fri they said no cause for chronic abdominal pain seen. As I was in awful pain in my stomach when they did it .got a ct scan 16th July so hopefully they will find my ovaries on that .I know the ovaries can shrink if yr premensual but gp said none of my results are showing premensual and yr periods don't just stop like that because since I've had the pain I've not had one .bless u must be so worrying for u what are they going to do will u have to have a op

[mrstadpole in reply to Shelleykins]

Hi ShelleyKins

All is well at the moment.I had 3 lots of chemo, then debulking surgery followed by 3 more lots of chemo.The surgeon said it was a good outcome.I am now just on Avastin, 18 treatments in total.I have had 5 and I am feeling fine.Long may it last.Hope they sort you out very soon xx

[Shelleykins in reply to mrstadpole]

Just want to know what it is now hopefully will find out what's goin on after the scan I thought it was a etopic pregnancy at first because lack of periods but all scans showing nothing .like u couldnt find my ovaries on transvagarinal scan been on morphine since April that's good news what the surgeon said and I pray for you it stays that way aswell x

[Hidden]

Hi there. Firstly, to have to wait a month for a CT scan seems unacceptable to me - it's just too long to wait if OC is a possibility - can you push for sooner, or go somewhere else? - it only takes a few days to organise mine. Secondly, although the CA125 blood test can be unreliable, 9 is a beautifully good result ! Finally, just wondering - the pain in your groin - are the lymph nodes swollen? Not that it indicates anything but just useful for you to know. Hope it all turns out well for you. Best wishes. Pauline.

[Shelleykins in reply to Hidden]

Hi had severe pain in back stomach top of groin been had two ultrasounds Inc transvagarinal one and both couldn't see my ovaries havent had a period for four months since the pain that's the hospitial earliest scan appointment

[bamboo89]

If you've got any money saved, it costs around £700 for a US and a bit more for a CT, done privately - I booked to have one done, but then was told by the NHS gynaecology consultant that I was wasting my money - my CA125 was 91 originally, fallen a fortnight later to 84, and the tumour marker blood tests were both negative. He said he wasn't in the least concerned about the very swollen inguinal lymph node, that I would likely need to see a General Surgeon about that, but paying for a CT was absolutely not necessary, because of no evidence there was anything 'sinister' going on. 'Sinister' being the euphemism they use for cancer... Since I'm not rolling in money, I didn't go privately for the scan/s, and I did wait 5 weeks for the NHS to do it - I was booked for a US, but the radiology doctor insisted I had an immediate CT following that scan (which luckily, being the end of the day, they did on the spot). 5 days later, biopsy of the lymph node, but it took them almost 3 months to finally confirm I'd got ovarian cancer, and it was Stage 4b. So no, the CA125 is absolutely not a reliable guide, and apparently, the tumour marker tests aren't either,given I had a .5 cm tumour in my pelvis as well as the ovaries and the lymph node.

On the other hand, had I paid for the scans, it wouldn't have made much difference, because I'd clearly had OC for some time, so finding out 3 months earlier wouldn't have altered the outcome. But I will say, I had absolutely no symptoms at all - no pain,other than a huge lymph node,so the fact you have pain and loss of periods does not indicate OC particularly. But for peace of mind (waiting till 12th July and then another week for results, I'd have been chewing my elbow off waiting that long if I hadn't been falsely reassured), if you're really worried, scrape the money up and go privately, if possible. Certainly your symptoms are not particularly indicative of OC,but clearly something's not right.

By the way, not being able to see the ovaries on an ultrasound scan is not unusual - often, loops of bowel lay over them, so they can't be seen on the scan. But a CT with dye will show them,regardless.

[Shelleykins in reply to bamboo89]

Yes something defentily not right very bad today lots of pain in left side I'm happier .ca was 9 but don't understand what's goin on I was admitted to hospitial three weeks ago said had high infection three lots of antibiotics thru iv had two ct scans ultrasound nothing still in pain on oral morph since April had two ultrasounds one being the transvagarinal as well they couldn't find my ovaries said had I had them removed gp referring me to gastroenglolist and having contrast ct scan 16th July I have a little boy with specail needs so will wait to do it here hopefully find out what's goin on after scan

[bamboo89 in reply to Shelleykins]

Ah, you appear to be saying you've already had your ovaries removed previously?

[Shelleykins in reply to bamboo89]

No radaloglist said had I had them removed what I couldn't believe gp concerned because still couldn't see them on transvagarinal one either no they still there but us not picking them up that's why doc wants contrast ct scan and repeated bloodtest three days before fed up of this pain now

[bamboo89 in reply to Shelleykins]

Oh I see, so you haven't had hysterectomy and ovary removal previously. The pain is why I'd try to force the NHS to give me an earlier scan... it could be related with your bowel rather than the ovaries, but without the contrast CT, no one knows. Where was the infection they treated you for recently?

[Shelleykins in reply to bamboo89]

They don't know but infection markers were very high had blood in urine aswell so they thought uti but prone to uti and this is a diffrent pain altogether then said gallstones ? Which I thought it could of been so three lots of antibiotics thru iv bloodtest came back normal sent home with morphine etc back to gp did internal concerned as stomach and top of groin swollen and very tender to touch sent for pelvic ultrasound had to have both but ovaries not showing back to doc ordered .ca bloodtest and ct contrast scan

[bamboo89 in reply to Shelleykins]

Not gallbladder, it would be very unusual to have pain on the left from that - gallbladder's located on the right, fairly close to the liver, and pain from that radiates up the back and into the front of your abdomen, but on the right, not the left. Spleen's on the left though.... could have been that I guess, but you need the scan, is the long and short of it... and in such pain, its awful you have to wait so long for that scan.

[Shelleykins in reply to bamboo89]

It's where I live that's a emergency ct contrast scan accorded to them my little boy has autuism and bless him is so worried because pain so pain sometimes can hardly walk and he sees me struggling and doesn't understand why .can't fault the gp he is trying to get to the bottom of it and no periods since the pain but that might be because of my age but not showing no menopause symptons. mum said could it be ibs but honestly don't think it is just annoying not knowing what is goin on be happier once they find my ovaries and everyone has said ct contrast scan is the best way

[bamboo89 in reply to Shelleykins]

Well, the squeaky wheel gets the oil, so to speak, so making a heavy duty complaint to the hospital via the PALS service immediately about how long you're having to wait for the CT scan in such pain and on morphine might, just might speed it up. Hospitals don't like official complaints; when I complained, I actually said I'd sue them if it turned out to be cancer because I had waited too long to hear anything. And the reaction to that was almost instant; called me in two days later ... being nice and waiting patiently doesn't cut the mustard, I'm afraid. I know it will be difficult to summon up the energy to make a fuss when you're in pain, but you can do it by phone... look up the PALs service for your hospital online. Good luck.

[Shelleykins in reply to bamboo89]

Thank you for all yr help and support I'm trying to get myself motivated to get dressed but pain quite severe today and had some morphine already I might speak to the doc Tommow to see what he can do

[bamboo89 in reply to Shelleykins]

In my experience, it won't be much, he's as much a victim of the system as you are - but a direct complaint to the PALs service from you (its a service for patients specifically) might get some action. But try your GP by all means...

[Shelleykins in reply to bamboo89]

I've had so many hosptial appointments with me and my son the last few months all over Lincolnshire that wanted to keep it local but if pain gets any worse I will call pals

[Hidden]

Hi Shelleykins,

Is there any chance you could be pregnant?

[Shelleykins in reply to Hidden]

No had two ct scans two ultrasounds wouldn't mind If I was thou but I'm not had 4 bloodtests aswell to check and they checked when I was admitted to hospitial if I was

[Hidden in reply to Shelleykins]

Thanks. I have asked this because there are ectopic pregnancies that may go unnoticed.

Are you taking any medication?

Apart from missing periods and pain can you think of any other symptoms, even if they seem not to be related?

[Shelleykins in reply to Hidden]

Yeah dizziness nauseaus pain when I go poo blood in my urine pins and needles in fingers

[Hidden]

Thanks. Any medication?

[Shelleykins in reply to Hidden]

On oral morphine since April anti sickness tablets

[Hidden]

Thanks.

Does the morphine give you relief from pain?

Have your docs considered PCOS?

[Shelleykins in reply to Hidden]

It eases it but their always a dull pain there even with the morphine no haven't mentioned pcos what's that

[Hidden]

Polycystic Ovarian Syndrome

[Shelleykins in reply to Hidden]

No symptons of that no extra hair

[Hidden]

This study shows some possibilities and ovarian cancer is NOT one of them.

link.springer.com/article/1...

[Shelleykins in reply to Hidden]

Should know more what's the reason hopefully after ct contrast scan

[Hidden]

Ok, let us know how it goes! 🤗