Are they missing pancreatic cancer???

blbur
blbur Member Posts: 1
in Rare and Other Cancers #1

Hello. I know you all have your own worries and I've struggle with whether to post this or not while reading through your stories.

But I'm not getting any help and after 3 months and frankly, I'm at my wits end.

In november of 14 I started to get really bad upper left abdominal pain, just below (not behind) the rib cage and pain along my left side as well. Never on the right side of me.

I became (and continue to be) incredibly obnoxiously gassy my husband says I've lost my classiness. My stomach is noisier than my outdated dishwasher and I have light (almost alien like gold) very soft stools all day every day. I also have new reflux (never had that before). No appetite loss and very little weight loss.

 

  • My pancreatic enzymes have been low (lipase is significantly below low cutoff of 15 at 7 on the first test and 11 on the next test)
  • My liver enzymes are all proper, a little too low in some areas.
  • I've had a contrast CT scan two weeks after pain onset which didn't even mention my pancreas except to say "unremarkable" - no measurements, etc.
  • I've had a HIDA scan which shows gallbladder functioning at 86% and no stones
  • I've had a gallbladder ultrasound which shows mild sludge - only the head of the pancreas was visualized during this and is unremarkable.
  • I've had a EGD which shows mild reactive gastritis, no hpylori, no celiac disease etc.
  • I've had a pancreas elastase fecal test which shows normal.
  • I've had Stool tests for parasites and they are negative.

 

I'm 35, female, with autoimmune diseases of the heart and thyroid.

 

For three solid months I can't get away from the restroom and have missed work which is something I have never ever been prone to. The pain and the digestive upset is not normal for me and unfortunately, when you plug in those symptoms you get pancreatic troubles. 

 

It took 30 doctors to diagnose my congestive heart failure when I was 15 so suffice to say I have a hard time trusting medical professionals from this - I told them multiple times it was my heart and they needed to further evaluate.

 

When reading forums or researching, no one ever says what their symptoms were. But Google seems to think it's on to something. I hate Google, by the way - it's so bad for me.

 

I'm just wondering where I should stand up for myself and where I should back down. I dont want to be a nuissance, but I don't feel good. If you had to fight for your diagnosis, or you see something I'm missing, I'd value your input and be forever in your debt because clearly, you have better things to do.

 

Thanks

Comments

  • Abbycat2
    Abbycat2 Member Posts: 644 Member
    #2
    You are coping with so much, blbur

    Hi , Blbur,

    I wish I could answer your questions and concerns. I am from the uterine board and just happened to check this board as I was diagnosed with a rare/aggressive adenocarcinoma. There is a website called pancan.com that might be helpful in providing you with information about pancreatic cancer . Light stools can be a symptom of cancer in the pancreatic head. Maybe a PET Scan would be a better test to determine if you have cancer. I was surprised to see that there is no CSN heading for Pancreatic Cancer. That's odd. You must advocate for yourself and for further assessments because if you don't or if you don't have someone doing it on your behalf , no one will do it for you!! Two days ago I basically told my oncologist that I wanted a CAT Scan . It has been almost a year since my last one , and I have no idea what is going in inside me . I had my CAT Scan yesterday. Keep fighting for appropriate assessments and don 't give up.

    I wish you the best care,

    Cathy

  • Abbycat2
    Abbycat2 Member Posts: 644 Member
    #3
    Blbur, I wish I had the answers

    to all your questions and concerns. I am from the Uterine Board and I was diagnosed with a rare and aggressive adenocarcinoma. Have you checked the website pancan.con? It may be helpful in answering your questions. Light stools could be a sign of cancer in the pancreatic head. It is VERY important that you advocate for yourself or have someone advocate for you on your behalf.  If this doesn't happen then you will likely not receive the necessary evaluations and treatment. Ask for a CAT Scan and possibly a PET Scan. If you don 't like your doctor then fire him and find another doctor. Two days ago, I told my oncologist that I wanted a CAT Scan as I have not had one in almost a year. I had my CAT Scan yesterday. I plan to get the best care possible!

    Don't give up trying to find answers.

    Wishing you only the best,

    Cathy

  • efdb50
    efdb50 Member Posts: 3
    #4
    CA19-9 Blood test for pancreatic cancer cells

    Hello,  yes you have to persistently advocate for your own health.  This CA19-9 blood test (although not 100% reliable) is often used as a guide for treatment success and also baseline levels of pancreatice cancer cells.  When they detected 2 growths on my pancreas, a CA19-9 blood level was over 2000 (normal is <37).  After 2 cycles of chemo the level has dropped to 107 - as an example.  So this told the Drs. that the treatment had a weeding out effect of the pancreatic cancer cells.  Also, keep up with your bilirubin levels and watch your pee color. If you have any partial blockage in your bilary duct from your liver, through your gall bladder and junctioned at the pancreas - this may cause symptoms.  In my case the Drs were focusing on the gall bladder as the site of obstruction (due to stones) when in fact the blockage was at the pancreas where the tumor was compressing the bilary duct and backing digestive fluids up.  The Drs could not put this together for 7 months.  It took overt signs of jaundice to shout out the real problem.  Please keep looking for a compassionate and qualified GI doctor who will commit to being a proactive detective for your health.  These doctors like to say evidenced based this or that, tell them you need the proof that your system from your mouth to your anus passes all tests that are available to determine optimal funciton.  Blessings, Chip

  • Oneshot
    Oneshot Member Posts: 153 Member
    #5
    hope this will help.

    Blbur,

    The two previous people that posted to you are correct in telling you, "You have to be your own advocate ".  Abbycat2 suggested a good site to check out. PANCAN.Org.

    I'm going off of what you posted.  I'm not sure if your dr. (s)  are specialized in pancreatic cancer or even cancer doctors.  I'm not trying to belittle the dr. or doctors you have been going to to.  So, I will say this.  Pancreatic cancer can be hard to spot in the early stages. Even with all the technology today! Not unless, the doctor(s) are used to seeing it or they are specialized in it.    I say this do to talking to other PC patients while getting treated for my stage 3 pc. (Note: Mine was big enough to see , plus between the exscruciating pain just below my sternum and being yellow with jaundice from head to toe. Made it simple to spot with a sonogram. ).  Many had told me they had gone to several doctors with no conclusive results till a dr. or someone else, told them to see a dr. who specialized in pancreatic cancer.  If you have pc. NOT JUST ANY CANCER DR. WILL DO!  I can't tell you  that enough if you find out you do have pc!  

    I might add. I never had any symptoms till about 2 wks. before my ER trip.  It just seemed like a really bad case of the flu for me till the pain and other things I mentioned showed up all the sudden one night.  Others I had talked to, had found out during a check up for something else in the region around the pancreas.

    You mentioned stools. They will most likely be floating, the color of cardboard and possibly have what looks like and is a greasy to oily look in the toilet with the stool

    Keeping you and your family in prayers,

    Oneshot - 6 yrs. cancer free

     

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