early symptoms, elevated CA 125 and normal pelvic ultrasound

[mel690]

I have been having the following symptoms now for several months; bloating to the point where I look 4 months pregnant and can't button my pants, feeling of fullness, nausea, constipation, severe pelvic and rectal pain during periods. First CA 125 a year ago was at 2; 2nd one 6 months ago was at 22; last weeks was at 40. Rectal pain is so severe during periods that I've passed out several times. Gynecologist thinks it's endometriosis, although I've never been diagnoses, am 43 and have two children. He did a pelvic ultrasound which was normal. Gastroenterologist scheduled barium CT scan and colonoscopy. History of thyroid cancer, blood in stool and blood in urine. Cystoscopy was negative although it created what we thought we chronic bladder infections and frequent urination over the past 6 months. Before the procedure I had never had any urinary tract infections.A few questions:

Can you still diagnose early ovarian cancer with a normal pelvic ultrasound?
Can ultrasound diagnose tiny tumors inside the ovaries?
Any other thoughts would be terrific.

[mel690]

Dear Mel,
I'm sorry about your frightening news...I would tell you not to worry, but that's a ridiculous thing to say. I will be thinking about you. If you need anything, please email me. I'm always available to listen. I do know what it's like to wait for those tests; history of thyroid cancer and have to take tumor marker test every 3 months as well.

[melenzbee83]

My symptoms were bloating (looking 6 months pregnant) by afternoon, constipation and dirreah, irregular periods some lasting 6 months, adominal pain especially when i was wlaking or exercising. extreme fatigue. Please note these got worse over an 18 month period. I experienced the worst treatment from doctors as i was so young but once diagnosed from a laporoscopy i had 3 surgeries within 10 weeks. I have ca125's every 3 months with an internal ultrasound (although useless for my type). I just dont think you should be wasting anytime its your body and i was very persistent, got a referral for a gyno then said i want a laporoscopy and he booked me in. Without me requesting it he never would of done it. I'm not sure about inside the ovary but they do take biopsies of ovaries and any funny looking spots. Best of luck, I may not reply for awhile just got an elevated ca125 result today and i'm not coping that well.

Please just talk to you gyno oncologist and ask can i please have a laporoscopy especially if you still have syptoms.

Much love  x x x

[mel690]

Thank you for your response. I have a few questions...will the laporascopy be able to identify a tumor inside the ovary or only those that are either on the outside or pushing the outside wall from the inside. Can you tell me what your original symptoms were and also the trend of your CA 125 in addition to months you waited in between testing?
Thanks so much.

[melenzbee83]

Sorry i forgot to add, The doctor will biopsy anything that looks suspicious which may be nothing :) but for me it is better to be certain than unsure.

Keep us posted.

[melenzbee83]

Hi Mel,
Thats good to hear tests came back negative. Basically I believe at this stage a laporoscopy is the next step, it is a way a specialist can have a look around and make sure no funny business is happening. Also if you do have endometriosis they can burn it off like they did for me which will help with the pain. I too had pelvic, internal ultrasound, CT scans and colonoscopy which all came back negative, however the laporoscopy found a small tumour on my right ovary and I was diagnosed with OVCA. It is not to say that you will have anything as serious as OVCA it may just be polycystic ovaries or endometriosis however it is important to note that often early stages of OVCA do not show up on the tests we both had that is why it is so tricky to diagnose. Often they will only show large masses not when tumours first develop. best of luck with everything but if i were you I would request a laporoscopy, it is your body and you know it best.

Mel x x

[Cindy809]

I'm relieved to hear that all the tests are coming back negative.  I know it is very frustrating for you.  What is your diagnosis?  Your doctor said possible endometriosis?  A lap might be a good idea at this point if you are still having symptoms.  I don't know the right answer.  Maybe someone else might jump in or you can go to the expert forum to the right of this page "Related Expert Forms" Ovarian Cancer.  Dr. Goodman might be able to tell you what your next step might be.  Make sure to give her all the details.  It might take a few days for her to respond.  If the page is full for the day try again later.  Hope this helps....Cindy

[mel690]

I had the pelvic and abdominal CT and colonoscopy. All were negative, but I have the same symptoms. Underlying nausea, bloating, urinary frequency in which I think I have a bladder infection, am treated, but culture comes back negative. Dr. put me on birth control because of the possible endometriosis diagnosis but it hasn't changed anything. Also, history of thyroid cancer. What now...it's only been 3 weeks since last CA 125. Should I wait another month on birth control to see if symptoms dissipate? If dr. did do laproscopic surgery what would he biopsy since all tests are negative for a mass? Thanks

[jlock]

I agree with the above post. I think your Dr. are doing what needs to be done,and your sx sound alot like endometriosis....which will not show up on any scans. I believe you might need the laproscopy just to be sure.  Good luck!~~~Joanne

[melenzbee83]

Your doctors are doing what they believe is the correct order of events however, If i were you i would not be waiting around a CT scan does not normally show OVCA in the early stages which is when you want to catch it, my gyno oncologist told me anything above 30 a laporoscopy should be requested as it is the best way to see what is going on inside as for me an ultrasound and CT was useless and unless i was as persistant as i was and requested a laporoscopy it would of never been found.

My small tumour on my ovary which they knew was there due to my laporoscopy did not pick up in a CT scan or internal ultrasound. I'm sorry but personally i feel doctors hesitate way too much when it is far cheaper and more effective to just have a laporoscopy. Trust me I have polycystic ovaries, endometriosis and ovarian cancer and it was only the laporoscopy that diagnosed all three! no scans worked! best of luck with everything let me know how you go. much love.

[Cindy809]

It sounds like your doctors are taking the appropriate steps.  A CT scan will give the doctors a better idea of what is going on inside.  You are in good hands.  The ultrasound is a starting point.  It is a good sign that nothing showed up on your ultrasound and that you are sceduled for a CT scan.  That is the correct order of things.   The colonoscopy will also give the doctors an idea of what is causing such pain and bloating.   Take it one step at a time.  Again, it sounds like your doctors are taking the appropriate steps and if after the CT they suspect Ovca they will direct you to a gyn oncologist and probably a PetCt will be ordered if you are still having symptoms.  Keep us posted....Cindy