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Concerned: I'm beginning to suspect I have pancreatic cancer
Pancreatic Cancer | Last Active: May 30, 2022 | Replies (67)Comment receiving replies
Hi all,
I thought I'd turn here for some feedback and support, as I'm terrified that I have PC. To give some background: I am 35 years old, the mother to a beautiful little girl who will be turning 5 in a month. About a year ago, in Dec. 2020, I started to notice that I was losing weight, and that I'd begun belching literally 50 times a day. The belching has continued and doesn't seem to be affected by what or how much I eat; I burp even after taking a sip of water. I ended up getting an endoscopy in May of 2021, which showed some mild stomach inflammation but nothing else, and my GI doctor was convinced that I had no serious concerns thereafter . My weight had stabilized even before my endoscopy, so I wasn't too concerned at that point either.
Fast forward to now. I continue to belch constantly. Even more concerning is the fact that I've lost 20+ lbs. in the last couple of months, and that my weight continues to decrease daily. My appetite has started to decrease, but I've been maintaining my calorie intake. It doesn't seem to make a difference, though--my weight just continues to decline; it's the lowest it's been in over 10 years. I also have loose, pale stools that often float. I've been back in touch with my GI, who has run some labs, which indicate that my direct and indirect bilirubin levels are elevated, that my WBC and neutrophil levels are high, and that my vitamin D level is still low, despite the fact that I've been taking vitamin D daily for the last year or so. It's a more subjective measure, but I can actually see the skeletal muscles in my legs being depleted; I have dimpling in and around my knees that are visible when I'm in a squatting position. I also have dimples in my pelvic area, where it's apparent that my fat stores are totally depleted.
A recent abdominal ultrasound showed no concerns. A contrast CT at the ER last week showed two cysts on my liver but nothing else. At that same ER visit, though, my ketone levels in my urine were off-the-charts high. I read online that this can indicate that one's body is in a state of starvation, and using up all of the glucose it gets and then turning to fat stores for further energy. My understanding of cancer is that it's fueled by glucose, so this is very scary to me.
All of these factors, taken in combination, have left me terrified that I'm suffering from pancreatic cancer and that, moreover, I'm in a state of cancer cachexia. My energy level has declined and my muscles feel easily fatigued. I'm currently awaiting the results of a stool elastase test, and if the levels are abnormal, I will be absolutely convinced that I have PC. My GI has agreed to do a repeat endoscopy, but it's not until April 7, and thus far he's told me I don't need an endoscopic ultrasound to examine my pancreas. Of course, that may change depending upon the results of the elastase test. At this point, I'm so scared and desperate that I'm thinking of reaching out to Roswell Park Cancer Center for a 2nd opinion.
If anyone has any feedback or support to offer, it would be much appreciated. My PCP has been brushing off my concerns, and I'm feeling pretty lost at this point. I'm terrified and extremely saddened at the prospect of potentially having to say goodbye to my beautiful baby girl, and it breaks my heart.
Thank you
Replies to "Hi all, I thought I'd turn here for some feedback and support, as I'm terrified that..."
I agree with others about getting a 2nd opinion.
My mother died of pancreatic cancer, so I worry about. I had genetic testing (for breast cancer) and there was no indication of higher risk of pancreatic cancer, but that does not mean I do not worry.
I have lost weight recently and of course I was concern. It turned out to be a new medication I was taking that decreased my appetite, but I did have some upper GI tests. Found a small ulcer and a biopsy discovered I had Small Intestinal Bacterial Overgrowth (SIBO) which does cause belching.
Here is more info about SIBO:
https://www.mayoclinic.org/diseases-conditions/small-intestinal-bacterial-overgrowth/symptoms-causes/syc-20370168
Treatment was antibiotics regiment over 6 month period. A week on, 3 weeks off, repeat with another antibiotic, etc...
I have also had abdominal MRI and did show small cysts on both pancreas and liver. Had a discussion about cysts with my breast cancer oncologist and she assured me due to small size it was not a concern and not an early indication of cancer. Will continue to monitor.
I hope you get some answers soon.
Laurie
I have an appointment at Roswell next Wednesday afternoon.
Not familiar with Roswell, but, another set of eyes and an oncologist's perspective are necessary. For whatever reason your current medical providers aren't concerned or just unable to ascribe a proper diagnosis. With pancan, time is of the essence. When my wife saw her gastroenterologist, it was 72 hours from gastro appointment to diagnosis of pancan. Bless you and your daughter and good luck you get diagnosed with something readily treatable.
My elastase test came back at a level of 59, indicating severe pancreatic insufficiency. At this point I’m convinced that I have pancreatic cancer; I have absolutely no appetite. I was able to move my appointment with Roswell to tomorrow morning; I pray that they will admit me and do all necessary tests immediately. My GI is still dismissing my concerns, telling me that I need an endoscopic ultrasound, but only on an outpatient basis.
So Roswell ordered a tumor marker test via blood work, also testing for lymphoma. Then from there a chest CT and/or endoscopic ultrasound, how quickly will depend on the results of the tumor marker test. I should get the blood work results later today.
The tumor maker tests came back normal. Now I’m waiting for an advanced endoscopist at Roswell to review my records and decide what he wants to do.
I have an endoscopic ultrasound at Roswell on Monday. It sounds like I will get some initial results right after the procedure, and info on next steps. But even if the doctor thinks I have cancer I likely won’t be admitted to the hospital, according to the nurse. Because “2 weeks doesn’t make much of a difference” in terms of treatment. I just don't get that part; if I’m on death’s doorstep, 2 weeks does make a difference.
Two to 3 months, can make a difference but much less likely in only 2 weeks. Keep your head up abd thinking of you.
I will be praying for you. I also have been concerned about myself. I do have 2 cysts on pancreas and my lipase is low. I have been asking my GI doctor in Atlanta to please do further tests. H said for me to wait until next December for my MRI with/w/o contrast. Sorry to say this but my stool is oily/greasy. So the stool elastase test for PC?
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If you are concerned about the direction or lack of from your doctors, by all means get another opinion from a GI team that handles cancer patients. But either way, look forward. Ask for patient support referral so that you can talk and find and a better place mentally. Your daughter needs a relaxed mother to keep making her feel relaxed. Let us know what you find out. Ask for the Pancreatic Cancer marker test, CA19-9. It is used to measure treatment progress but getting a baseline could help you as well...normals are usually 0-40, depending on the labs doing the test.