Wondering if I should talk to my doctor again after normal CA125 results.

[Sniffy22]

I am slightly concerned about ovarian cancer symptoms / risks and dont know wether i should talk to my doctor about my concerns after CA125 test results came back OK / normal. My story so far..

Unrelated I started having a dull pain in my right kidney in December and went to my doctor who after finding trace blood in my urine sent me for an ultrasound to check for kidney stones but they also did an abdominal scan inc ovaries. When I got results back doctor told me no stones / abnormal results found but did have urine retention / back pressure on kidney so sent for cystoscopy to check my bladder.

In the mean time I have lost my appetite, can only manage small meals, feel bloated (I started 'feeling fat' in December but put down to putting on weight after slipping on exercise over previous few months) & digestive system not happy, which is when I found ovarian cancer symptoms on Internet and saw I met some of the risk factors - early puberty, never had children I'm 42, I'm nearly officially post menopausal (1 year since last period in three weeks time, menopause for me was 6 months no periods, 3 periods close together then nothing since) on the positive side I was on the pill for 10 years but came off 8 years ago and early menopause at 42 years old.

On explaining symptoms of no appetite / feeling bloated he ordered CA125 blood test ( I had previously told him I was peri-menopausal, but he had forgotten)

In the meantime my cystoscopy came back clear (after a biopsy on suspicious patch on bladder) but no resolution on what is causing urine retention or kidney pain so urologist has ordered CT scan due 1st April

So back to doctor yesterday, still no appetite and still feeling full / bloating, though now have very rumbling stomach so he is running blood test for celiac, however he had a trainee nurse with him so was talking through my symptoms and he explained to her he had done CA125 test and at this point mentioned they had found a cyst on one of my ovaries which he hadn't told me in February when ultrasound results came back, I didn't ask the size, I know I probably should have but obviously he hadn't been concerned enough to mention it to me.

On getting home I'm now wondering if I should talk to him again about checking if to make sure the cyst hasn't grown etc even though my CA125 came back OK a couple of weeks ago? I have another doctors appointment for just over 2 weeks time and CT scan for kidney / bladder in 3 weeks time.

[HogwartsDK]

Hello Sniffy!

First of all welcome! This is a great place for good advice and there is lots of wise women to give it!!!

If I was you I would definately follow this up. I am sure it's probably innocuous but my CA125 was normal and the cyst I had removed in August turned out to have cancer cells in it! The CA125 is a good monitoring tool but just as high levels don't necessarily mean cancer low levels don't necessarily mean no cancer.

I don't mean to alarm you as I it's more likely to be a regular cyst but I am just saying don't rely on normal CA125 and it sounds to me like your instincts are telling you to follow it up! I am a firm believer in following your instinct and peace of mind is so much more valuable than worrying about what the docs will think.

I hope this is helpful and again I don't mean to alarm you about the CA125!! I am 45 BTW and similar to you re no children etc! Though my surgery put me into early menopause I had no menopause symptoms previously!

All the best with your decision making its not easy but IMHO peace of mind is the key here!

Mind yourself and best of luck!!

Dx

[Hidden]

HI Sniffy, I am smiling at your name. I think I would also mention it to your gp when you are back in two weeks. I would follow it up, it could be nothing but then again why take the risk. I am just thinking back to the first days of this illness and returning to my gynae for consult He also had a trainee doctor with him. As I went behind the curtain to undress he remarked to the student, anyone who is given a diagnosis of Cancer is affected physcologically. I remained quiet but I was wondering what kind of vibes I had given the gynae then I just thought okay next time go in and he might be happy if I did a jig or some Irish dancing. The things that go through your mind.

[indego]

Hi Sniffy

If it were me, I'd be asking for another ultrasound. If you can, go to the same place so they have the images on record and can compare them.

If your doctor didn't feel the need to mention it, they've probably decided it was a functional cyst (part of ovulating) but the only way to confirm that is a follow up scan.

CA125 is only a good diagnostic tool if your particular issue raises it.

I've had a tumor which didn't raise it at all, and one that did.

Mine also raises when I have a hemorrhagic cyst, or a chocolate cyst.

Normal functional cysts that don't resolve properly don't seem to raise it.

(...Can you tell I had evil ovaries long before the cancer issue? lol)

It's also worth remembering that functional cysts that have failed to resolve can cause similar symptoms to OC.

However, it's a really simple thing to get another ultrasound done, and if you have any symptoms at all it's worth pestering your doctor to do one.

It would also be worth asking if a CT of your bladder will see your ovaries.... I'm assuming it would, but I'm not sure if you'd need different contrasts or something.

[hansraj28]

Good thing is you have a scan due soon . If the scan can specify abdomen and pelvis then it will include not only kidneys and bladder but ovaries as well .

Please make sure that is what your dr requested for the scan to cover . Then sit back and wait for scan report . You will be better equipped to decide once you got all the information .

Good luck !

[LesleyGreengran]

I agree with what's been said. Might be worth asking whether the people reporting on the scan will be looking at the ovaries as well and will report on that.

[Veronique]

I have had Ca Ovarian for 4 years and now have 3 tumours in 3 sites. During all that time my CA 125 results have been well within normal range (except very first, before debaulking and then it was only 63) so as others say, it is only an indicator. Only CT scans give any clue about my tumours.

Good luck

[Martina18]

My CA125 before dx was within the normal range as well - 8 - bc my clear cell OC apparently doesn't always raise the level. 2 US came back funky and showed a growing "nodule" and an MRI was weird as well, but my doctor was still saying most likely benign when he went in as I had a history of ovarian cysts and was young for the disease. I should have been in surgery at least 2 months earlier, but we putzd around bc it didn't seem all that concerning even though I had lots of symptoms, constant cramps, periods haywire, abdominal pressure, etc. Anyway, woke up to an OC dx. in June 2013. Insist that you get further work-up. This is a sneaky disease and obviously the earlier it's caught the better. Good luck and hope everything is nothing!

[Naimish]

Please do not rely on Ultrasound. CA125 and CT scan are THE best diagnostic tools for malignancy, as far as I can understand. My wife lost six precious moths due to the Ultrasound being unable to pick up the malady.

Naimish