Symptoms but ultrasound scan and bloods OK

[Jen6]

Hello. I have a lot of classic symptoms of ovarian cancer such as bloated stomach, fatigue, needing to go to the toilet more often, feeling sick not able to eat very much at any one time. But I had my ovaries removed about 5 years ago. I know from my reading that it is still possible to have ovarian cancer after having ovaries removed. I had an ultrasound scan and the CA 125 test which were both clear. However all my symptoms seem to be still there and getting worse. Is there anyone out there who has a similar situation to this?

[WorriedHusband]

An abdominal CT scan might be helpful to put your mind at ease.

[Hidden in reply to WorriedHusband]

The CT scan may help, but can also give a false hope as it won't detect the Ovarian Cancers that don't always create cysts or tumors. My wife had an Epithelial type of Ovarian Cancer, quite common among post-menopausal, that may or may not form a mass, just buckets of metastatic fluids - Pleural Effusions and Ascites. The Pleural Effusions collapsed Sandy's left lung two weeks in a row.

Stage Iii Ovarian cancers spread from the Ovaries to the immediate neighbors and by Stage IV to the Pleural Sacs surrounding the lungs.

Sixty different types of Ovarian cancer make the diagnosis even harder, especially in the absence of tumors or cysts.

Even Sandy's classic symptoms including the Pleural Effusions that tested positive for Metastatic cells weren't enough to convince her Oncologist until he saw the results of her PET scan.

[Jen6 in reply to WorriedHusband]

Gosh – I turned on my computer just now and found loads of replies – how amazing. Thank you so much for your time and advice. I have just come off the phone from the hospital appointment team who have booked me in with a Gastro consultant this Saturday morning, which is wonderful. Had long chat with a different GP today who went thro the scan results in detail which helped to put my mind at rest. Also recommended trying Probiotic capsules and Activated Charcoal to see if they eliminate the symptoms – but recommended that I still go for the Gastro appointment and hopefully a CT scan too. So, fingers crossed one of the lines of action will be fruitful. If they aren’t, then I will take on board various people’s suggestion to try to see a gynae-cancer person. Meanwhile, I’ve been out and bought 2 nice baggy dresses that I will feel good in but that don’t show my ‘6 months pregnant’ tummy! Thank you for your advice and good luck with everything that you are coping with. Jen

[Hidden]

I would agree ask your gp explain how your are and see if he can arrange a consult to have a ct scan just to be on the safe side

[kristinaapril]

I applaud you for being proactive with your health. An ultrasound does not always pick up gynecological abnormalities; so I would recommend asking for a CT scan as well.

Also, ovarian cancer has rather vague symptoms that can be associated with a lot of GI issues (IBS, Acid reflux, etc), which are much more common than ovarian cancer itself. If the CT scan comes back clear, I would recommend booking an appointment with a gastroenterologist, to see if your symptoms are due to a GI issue.

[Purple_k_in_Oz]

Hi there. It’s an awful time and I’m sorry you are facing this worry. I can only echo the previous comments about the CT and gastroenterologist referral. You may be advised to have a colonoscopy which isn’t fun but is a very good diagnostic tool.

I did just want to add that the CA125 is not completely reliable. Some types of ovarian cancers do not express high levels of the protein which CA125 measures. A normal result is not a guarantee. Please do not think I’m saying this to scare you! The bugger with OVCA is that it is hard to detect so good on you for being on the ball and even knowing the symptoms. I dare say most of us on this forum only knew too late. Good luck and please let us know how you get on if you have the energy to do so. Xx Kirsty.

[Hidden]

Jen, the lovely lady you see in my photo is my wife, Sandy. Like you, her Trans-vaginal ultrasound found no Cysts, tumors, or abnormal growths. Head to Toe CT scans also showed nothing. Same for the X-rays, done both tithe and without Barium.

So, no confirmation of OvCa even though she had volumes of Pleural Effusions removed two weeks in a row, with the lab showing Metastatic cancer cells from the first one. She also had a liter or so of Ascites drawn from her abdomen - some of the 60 identified types of Ovarian cancer do not always form cysts or tumors that make for an easier diagnosis.

Even though her CA-125 was elevated, he discounted it, dust to the number of false positives associated with the test.

I had to talk him out of both -Colonoscopy and the Endoscopes he wanted to use to search for tumors. Apparently, he was too busy to review her complete file with the multiple CT scans showing no tumors, even with the tests for Colon cancer being negative.

The Oncologist remained unconvinced until he vriewd the more expensive PET scan the following week.

I suggest you visit DoctorOz.com , search for 'ovarian' and the Tracker chart for recording the number of days you experience the four BEAT symptoms -

Bloating

Eating less, but feeling full too soon

Abdominal pain that is vague as far as specific location

Trouble with the Bladder - more frequency and/or urgency

With symptoms present twelve or more days in a month, it can guide your doctor to a closer inspection for OvCa. If he or she still rules it out, at least they confirmed the absence of cancer.

If possible, ask for a referral to a Gynecological-Oncologist. A specialist in female cancers, who will have a more extensive training and experience with OvCa.

Best wishes for a fast diagnosis.

Dennis

Caregiver/survivor

[Hidden]

WorriedHusband A negative CT scan can be just as misleading as a false Negative CA-125. The CT scan can only show abnormal growths including cysts or tumors, but won't confirm an OvCa cancer that doesn't always form tumors. My wife had Epithelial Ovarian Cancer and it is one that may or may not form a mass. Just liters of Pleural Effusions and Ascites- two types of metastatic cancer cells that don't appear on CT scans.

The one absolute test in that case is a PET scan that highlights the faster growing cancer cells where radioactive-tagged sugar is concentrated.

[WorriedHusband in reply to Hidden]

Dennis,

I agree CT scans can be misleading for the reasons you outlined. My wife's CT scan before her debulking did not show any tumors; just trace amounts of free fluid. It turned out she had extensive spread of disease in her abdomen. However CT scan is still the gold standard in the gynonc community.

PET accuracy exceeds CT maybe by 10% and it is not enough to warrant its widespread use especially in the initial diagnosis of OvCa therefore insurance companies do not cover it as an initial diagnosis technique. I understand PET is more valuable in the recurrence setting as it can detect cancer cells spread throughout the body.

Testing HE4 could be another option for Jen as it's more OvCa specific than CA125.

[Hidden in reply to WorriedHusband]

My wife's PET scan showed hot spots on both lungs, both Ovaries, her Liver and Abdominal Wall. So from no help from multiple CT Scans to six hot spots that gave confirmation seems to rate higher than a 10% improvement in the imaging. I knew it came at a higher cost, so is used only on rare occasions. I believe my local Center only schedules one or two patients for the morning with one or two more in the afternoon. The isotope has to be flown in daily due to the short lifespan.

[WorriedHusband in reply to Hidden]

Dennis,

Just checked out your story. Sorry for your loss.

I based my PET vs CT conclusion on the following study.

ncbi.nlm.nih.gov/pubmed/174...

[Hidden in reply to WorriedHusband]

No time to read the linked study, but there may also be a difference due to our two medical communities separated by that large pond between our countries.

Women in the U.K. have access to the ROCA Test which has been rejected by our FDA. The ROCA Test was developed in the U.K. Based on a 15 year study involving over 200K women, and was proven to have twice as likelihood of confirming OvCa at Stage I or II than the CA-125 alone.

Dennis

[Jen6]

Gosh – I turned on my computer just now and found loads of replies – how amazing. Thank you so much for your time and advice. I have just come off the phone from the hospital appointment team who have booked me in with a Gastro consultant this Saturday morning, which is wonderful. Had long chat with a different GP today who went thro the scan results in detail which helped to put my mind at rest. Also recommended trying Probiotic capsules and Activated Charcoal to see if they eliminate the symptoms – but recommended that I still go for the Gastro appointment and hopefully a CT scan too. So, fingers crossed one of the lines of action will be fruitful. If they aren’t, then I will take on board various people’s suggestion to try to see a gynae-cancer person. Meanwhile, I’ve been out and bought 2 nice baggy dresses that I will feel good in but that don’t show my ‘6 months pregnant’ tummy! Thank you for your advice and good luck with everything that you are coping with. Jen

[chrissapam]

would ask for regular CA125 Tests for monitoring....or a CT scan...my cancer markers only went up very slowly initially and the ultrasound scan also initially misread! Take Care Chris xxx