Searching for advice

Hello all. A bit of brief history- since Feb I have had upper left pain and some middle burning. My lipase has been slightly elevated and CA 19 has gone from 37 (Jan before all the pain), 66 to 57-I have had neither tested in the past 2 months. I have had a CT, MRI, EUS and MRCP of surrounding areas-all clear. I am still having pains.

 My dad died of pancan last yr so I am very aware of PC. I am not sure if I should keep testing or trust the results of the scans? The CT was done in Feb, the EUS end of FEB, and the MRI and MRCP in June. I am so terrified I have this and the scans have missed it. I dont mean to be so scared, but I have no other leads as to what would cause the pain and elevated labs?

Dear Friend: It is normal to be scared especially with a history in the family. You should question Your doctor more closely and if he is not schooled in cancer you need one who is. Pain is a sign that something is wrong. Glad the cat scan etc is clear butI am confused it is Sept  have you had more tests? Has your pain increased, if so get another opinion. I wish you all the best and that you don't have cancer but something more begnign like gallstones. Anyway please get another opinion or your fears may send you into the very thing you fear most. Take care MMS

On 9/8/2009 k2626 wrote:

Hello all. A bit of brief history- since Feb I have had upper left pain and some middle burning. My lipase has been slightly elevated and CA 19 has gone from 37 (Jan before all the pain), 66 to 57-I have had neither tested in the past 2 months. I have had a CT, MRI, EUS and MRCP of surrounding areas-all clear. I am still having pains.

 My dad died of pancan last yr so I am very aware of PC. I am not sure if I should keep testing or trust the results of the scans? The CT was done in Feb, the EUS end of FEB, and the MRI and MRCP in June. I am so terrified I have this and the scans have missed it. I dont mean to be so scared, but I have no other leads as to what would cause the pain and elevated labs?

 

I know exactly how you feel. I just lost my dad in January after a 5 month battle. He had no history of CA, was a non-smoker and never drank. During his illness  found myself having the same sort of pain you described with similar test results. My docs sent me for CAT scan etc, but I have to tell you, I do feel that much of this was emotional and grieving for me. ( I didn't at the time, but now I see things more clearly). They put me on a mild anti-depressant ( which I did not want to do) but since then my pain has been greatly diminished and I do think know that most of it may have been from the emotional distress that his illness and death caused me. I would say be vigilant with tests, but at some point you may have to realize that the emotional part of this can present in physical pain. My thoughts are with you as you go through this process. Because you lost so much, sometimes the emotional pain can become physical.

I know all about pancreatic cancer (I do hope that's what you meant by pc) as my husband died from it after one month at the age of 51. My advice is to go to a center which deals with high volume digestive cancers (like Johns Hopkins) and get a second opinion. They can look at the family history, symptoms and test results. Sometimes the tumor is very small and hard to find, other times, it might just be an inflammation. Either way, there is nothing wrong with erring on the side of caution.

Thank you for your responses. I wish this was just emotional, but my lipase and CA 19 have been elevated which backs of the fact that my pain is real, and is my pancreas. I wish I could go to JH, but I live in CA and its too far for me. I have been seen at CPMC and will be doing another EUS in 2 wks.

 This may be  a dumb question but wouldnt something have shown up after having pain this long--something in any of my tests which were the CT, MRI and EUS???

 I pray this EUS comes back clear as well and if it does I will prob. just be monitored annually. I just dont know

There are numerous things that can make CA19 rise. Inflamation being one of them. You are right to be concerned BUT you also need to push your doc to find other possible causes as well. If your doc does not you need to find another. There are sooo many things that can cause pain in the digestive tract and it would be ashame if the sole focus was PC especially since the scans have been clean numerous times. Because if it's not PC then you will continue to suffer and get no relief or answers to why this is happening. Good luck.

I have also looked at other possibilites, but those have all been clear as well. My lipase and ca 19 keep coming back elevated so my GI and Primary both say it is my pancreas, they just do not know what is aggrivating it. I of course continue to search for answers all around but also want to be sure I am not putting this monster of a disease off to the side. Obviously with my family history I am more sensitive to this then the average person that may be going through this--whether that be bad or good. I would think after this going on since Feb something would have have shown in my ct, mri or eus, but I know that is not always true.

Yes keep chking and use other docs.

Where in california. We had wonderful experience with USC KeckMedical and Norris Cancer Center. ..that is all with USC in LA,

Specifically DR. Rick Selby and Dr. Heinz Lenz..both are highly skilled and reccomended.  Whole group and staff there are great. Hard to get in but try them.

On scarier news my brother did go in for Distal Pancreatectomy and that got cancelled/aborted due to found seeding in Peritoneal Fluid/Cavity. Nothing showed on scans. CA 19-9 trended down from 1200 at dx to 97 pre-op.

DID YOU GET an Important PET scan? I forget your list.That PET showed no liver action , no lymph node involvement YET still these little petlet suckers were there all the time. Shoot. ONly found them by touching them.

So good luck. Have you been on the great Johns Hopkins Disscussion Board. I post over there as 'Brogan in Seattle"

Also will soon post my full surgery report here. bye bye. Brogan

 

On 9/8/2009 k2626 wrote:

Hello all. A bit of brief history- since Feb I have had upper left pain and some middle burning. My lipase has been slightly elevated and CA 19 has gone from 37 (Jan before all the pain), 66 to 57-I have had neither tested in the past 2 months. I have had a CT, MRI, EUS and MRCP of surrounding areas-all clear. I am still having pains.

 My dad died of pancan last yr so I am very aware of PC. I am not sure if I should keep testing or trust the results of the scans? The CT was done in Feb, the EUS end of FEB, and the MRI and MRCP in June. I am so terrified I have this and the scans have missed it. I dont mean to be so scared, but I have no other leads as to what would cause the pain and elevated labs?

Hi k2626,

Sorry to hear of your troubles. Just some additional thoughts ..

Cholangitis, pancreatitis, infections, inflammation and liver disorders can also elevate CA19 levels. Given that you have upper left side pain, have your doctors checked your spleen? You could have an enlarged spleen which can be very painful but usually the cause of an underlying problem unless you've had trauma (an injury) to that area specifically.

I lost my mother to PC earlier this year. It's been a sad, painful and stressful time. I imagine you have felt the same and so, there is every reason to consider that this may be as the result of the stress and pain you have experienced.

Given that the previous tests have returned normal results is very positive and something to take some comfort and faith in. Try and relax, but do follow up with your doctors and have your spleen checked if not already, and blood work to check the liver and an overall check for infections or a possible ulcer. Hoping this is of some help. Take care!

 

Thank you so much. My spleen was checked in my xrays, and they said it is my pancreas since my lipase is elevated. It is a good sign nothing has shown on the CT, MRI or EUS thus far. I am scheduled for one more EUS (which is 7 months after the first one) next week. All other things have been ruled out and am grasping for straws thinking maybe autoimmune as I have other odd things going on.

 I just want to be sure I am not, or the scans have not missed anything. I have done so much research about pancan due to my dad over the past yr and know how it can easily be missed in scans. I did read the EUS is supposed to be a great diagnostic tool but that too can miss lesions.

 Thanks for offering advice..and I am also sorry for your loss. Such a horrible disease