All the symptoms, but won't give me the test

Question

Hello ladies, haven't been here in a while.  I have all the "symptoms" but they will not give me the CA-125 becuase of my age (26).  I have the pain, swelling, integestion, leg and back pain, right down to the liver dysfunction.  I'm really worried.  They are sending me to a GI specialist to rule out anything on that end.  Can he authorize the test for me?  Even if if turns out negative I (and my mother)  would feel a lot better.  Thanks for any help!

dian07 · Answer

Hello there,
I am wondering.... if you are concerned about the possibility of
ovca, why not request an ultrasound? Certainly you would get more information there than you would with a CA125......a test that is not reliaable in pre-menopausal women, and, a test that is reactive to more than just ovca.
Just a thought for you to consider.
Peace to you and your mom.
dian

PennyP · Answer

I have had all of the ultrasounds and the exams and they do not know what is wrong with me.  I've been getting progresivly sicker for the last 2 years.  I had a cyst the size of a volleyball removed last year that no untrasound picked up. (I've had ovarian/cervical problems for about 6 years)   My main worry is my stent of Lupron (hormonal chemical therapy).  My family has a history of chemical sensative cancers and my body basically has been revolting (getting sicker) since that therapy.  Why not take the tests/scans?  At least then I would know that OC isn't something I should be worried about.  People have been diagnosed with OC at 22, why shouldn't I worry about my problems just like someone experiencing the same problems at 50?  I would much rather catch them early.  I know that the test is sometimes unreliable, but wouldn't you do anything to find out what is wrong with your body?

scram · Answer

I'm sorry to hear your frustration PennyP. I too have just been aware that the symptoms I have been experiencing (which are very similar to endometriois and IBS) may also be consistent with OvCan. I was on antoher thread where others have siuggested at the very least just to get the CA 125 blood test done. I too have had cysts and treated for endo in the past and have had ultrasounds. How did they eventually know you had a cyst if it didn't show in the ultrasound? I wonder if I too may have another cyst that isn't being detected in the ultrasounds? I have heard of some women having fluid removed which if that is all they have to do I would be happy with - because my abdominn is so distended I look pregnant! I hope all works out with you. Hopefully my doc allows me to get the CA 125 test.

dian07 · Answer

I wasn't aware of your history....I too am bewildered by your doctor's refusal to order a CA125. Does he offer you any explanation other than your age? You requesting the blood work should be enough of a reason for him to place the order. 
Yes, I would think your gastroenterologist could order the test for you as well.
Hopefully explanations and solutions will appear shortly....you have been a very patient patient...six years is a very long time!
Have you been seeing the same doctor all this time? If so, maybe it's time to seek another's opinion. 
I imagine these symptoms intrude on all areas of your young life; what a hastle....it's good your mom is there with you. 
If I offended you earlier, I apologize.
Peace to you and your mom.
dian

Gatsby · Answer

Ok, you know I am going to tell you that 99% of ovarian cysts are benign.  Also ovarian disturbances can cause GI problems and lower back ache.  I think that you should go for a second opinion.  Also, the ca125 is not a reliable test for premenopausal women.  I hope this helps.
~Tascha

CindiSue · Answer

There are other cancer tumor markers besides the ca125 that they could do also. "all the exams"...was wondering if they did basic blood work? I'm sure they must have. Not very thourough given your situation IMO. I agree a second opinion is in order if they won't do something more to dx this.

CindiSue · Answer

"oh, the world is beautiful and we all need to get along...la lala."

I get it. That is usally me and I was born in 58 so WAS a hippie! Or flower child as I like to say. The stuff you've been through has obviously taught you what is important. I wish you and your family good heath and happiness....and a flower or 2!

xrayu2 · Answer

I was told that CA-125 is best used once an ovca diagnosis has been established.  It becomes a good way to monitor recurrence and defeat of the disease based on the first test taken after diagnosis.  I don't know.  I have not it done and have not asked for it.

PennyP · Answer

Thanks everyone...it's nice to know that you aren't "crazy" or it's "all in my head".  I'm so tired of that.  I have my appointment on Monday and I'm going to push for all the testing I can get.  I have seen 2 different Gynos.  My first was a man that hit on me in his office, my second and current is female and truely concerned.  She's sending me to the GI doc because I look so sickly.  I should have pushed for this testing sooner.  BUT!! I'm going to make sure that it happens or I'm going to find a doctor that will.  Thanks again

DebiR · Answer

One thing to note - it is my understanding that a round of Lupron would actually reduce your chances of OVCA.  Others my know more but that is what I had thought.

PennyP · Answer

Birth Control in general may reduce your risk, but with the Lupron I am worried about the other factors of hormonal therapy.  Lupron makes your brain think that you are in menopause and your body believes it.  My family's history with cancer starts almost immediatly after menopause.  Any form of chemical therapy is almost dangerous and my current doctor said that she would never have recommended it to me.  Basically, the one thing that has helped me, could be the reason I am so ill now.  Kind of ironic isn't it?

All the symptoms, but won't give me the test

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