Ca 19-9 elevated to 150 U/ml **Please, I need advice**

[wanttoknowtheunknown]

Hello, I need some advice!

MY BACKGROUND:
I am a 29 year old female.  I have been having left upper quad. abdominal pain for about 3 years. Last year I had a slightly elevated CA 19-9 of about 55 U/ml.  I went to a physican and I was told that I was to young to have pancreatic cancer and something else is elevating it.  They did an abdominal MRI in 06/07 with and without contrast. The also did a vaginal ultrasound of my uterus because my physican said that endometriosis could falsely elevate it.  The MRI and vaginal ultrasound came back fine.  I also had a breast exam (not mamogram), because my physican said that breast cancer can also give a false high CA 19-9.  My doctor felt no unusally lumps in my breast.
Since 6/07 I have had an obstructed bowel, constipation, and still continued abdominal pain.  I had a colonoscopy, which took me two days to prep (2 gallons of go lytley before I had a bowel movement). My colonoscopy came back normal.  I also had a upper GI scope(through my mouth) and that came back normal.  I have also been tested for celiac disease and that came back normal. I also was tested to cystic fibrosis and that was normal.
Also, all other blood test were normal, CBC, amylase, lipase, liver enzymes, etc.
So after all this work-up my physican has made me believe that I am crazy and I making all these symtoms up in my head, so I went to another physican to get a second opinion just recently and this is the findings:

For the past 6 weeks I have been getting CA 19-9 done every 2-4 weeks and it's been slowing increasing:
My initial in 06/07 = 55 U/ml
6 weeks ago = 77 U/ml
4 weeks ago = 115 U/ml
Last week = 150 U/ml

Now my second opinion physican is concerned because of all the GI problems I have had and the elevating of the CA 19-9 so he referred to a GI doctor that I will be seeing in 2 weeks.

MY QUESTIONS:
What will my GI doctor do?  Am I too young to have pancreatic cancer?  Is there anything else aside from the work-up already done on me that can give a false high?  Why wasn't my pancreas checked? Is pancreatic cancer a possiblitiy?

[Cuppa88]

Please give us an update! I am in the exact same situation as you!!

[abu3abdalla]

update please ??!!

[wanttoknowtheunknown]

Thank you!

[Fernando Roque, MD]

Hi.  Your doctor is right in telling you that the insurance will not pay for further work-up just to investigate an elevated CA 19-9 without an obvious mass on MRI.  You can of course, pay for the additional work-up, so you can have peace of mind.  Talk with your doctor about it.  If you are going to proceed with further tests, it might be advisable to go with a PET scan rather than an ERCP (endoscopic retrograde cholangio-pancreatography), since the PET scan is a less invasive procedure.  ERCP involves inserting a flexible scope through your mouth and injecting a dye to visualize the pancreatic duct.

It's premature at this point to discuss the prospect of chemotherapy.  But if it ever comes to that, the drugs used in pancreatic cancer (e.g. gemcitabine, oxaliplatin or capecitabine) do not cause permanent sterility.

[wanttoknowtheunknown]

Thank you so much for your fast reply, I've been checking all day.
I forgot to metion that I also had a hida scan done of my gallbladder and that was normal.

I read your last artricle and I know that CA 19-9 is not a screening tool for cancer.
I was told about the PET SCAN and a test I think called ERCP, but I was told that since nothing else is out of wack(blood work) that insurnace will not pay for any of these test because of my age and a CA 19-9 can't be used as a diagnois.
I have been in and out of ER for the past years for this left upper quadrant abdominal pain, can't that along with the CA 19-9 be put as a diagnois code to get a PET SCAN or ERCP?  Even if insurance doesn't pay for it can I request it and pay for it myself?

I keep telling myself I'm too young for this, but if it is it I know it would be detected early enough to save my life but no one will give me the time of day.
I know that PC is the hardest to detect and patient's do not see symptoms(if they are going to have any) until stage 3 and that is too late.  I need you to be honest with me what is it that I need to do to get this process going.  I have been hearing NO for everything else and I just want to hear NO for pancreatic cancer too. I am to the point if I have to cough up thousands of dollars to save my life, I'm worth it.

One more thing, if it is it, my husband and I want kids and are in the process to get pregnant.  If I have to go through chemo, can I still have kids?

Thank you again, you are the first not to give me the run around.

[Fernando Roque, MD]

Hi.  I would like to direct you to an earlier discussion in this forum regarding CA19-9 levels in people with no apparent pancreatic mass (http://www.medhelp.org/posts/show/422994).  I hope this would help answer some of your questions about this test.

With a progressively increasing CA 19-9, particularly with levels already more than 100 U/ml, the possibility of pancreatic cancer cannot be discounted outright.  If the CA 19-9 continues to rise, and if all the other probable causes of a rise in CA 19-9 are already excluded (e.g. endometriosis, cystic fibrosis, celiac disease, gallbladder disease), then it might be a good idea to do a PET scan to look for possible cancer which may have been missed out by the MRI.