Concerned: I'm beginning to suspect I have pancreatic cancer

Posted by lookingforanswers2022 @lookingforanswers2022, Jan 21, 2022

I have an appointment with the GI specialist in a couple of weeks, and I sent a message to my GP to ask if there are any blood tests I could do in the meantime. I feel a sense of urgency and anxiety and feel that time is of the essence. But I also know that I am not going to get any guaranteed answers either way until I hear back.

Waiting for Monday for a response from my GP seems like such a long time to wait. I feel like I’m bursting at the seems with anticipation. I don’t want to tell any friends or family because I don’t want them to worry for nothing if it’s not actually cancer, I want to give them the truth when I have it. From my research it looks like there is not a lot of home remedies for symptom relief or anything for pancreatic cancer if that is indeed what it is. Waiting for an appointment with the GI specialist in two weeks seems like it will take forever. I’ll be starting classes for school soon and the abdominal pain is getting worse to the point that I’m afraid it will affect my ability to study and pay attention in class. It has been affecting my quality of life for years and slowly but surely sabotaging me from behind the scenes. I don’t want it to interfere with being able to work at a job or study for class and yet here we are.

I posted my symptoms in detail in another discussion board for Digestive Health (“Mystery abdominal pain”). But the main symptoms are frequent if not constant stomach pain that gets worse after I eat even after seriously modifying my diet to eat the most nutritionally dense and least aggravating foods, bloating and nausea. What works doesn’t usually work long or consistently. Tried a number of meds and supplements, most of which made the pain worse. Extremely sensitive and tender central upper abdomen. I can’t lay on my side too directly, never on my stomach, sometimes even the way I sit in a chair makes it uncomfortable. I’ve seen specialists and dieticians and my progress has plateaued and the pain is much the same, maybe a little worse. I’ve had the stomach pain for about 8 years, but it has gotten noticeably worse with more symptoms in the last 3. I feel like I’m losing my mind a little bit. I want answers but I know I have to wait.

Any recommendations? I feel like deep down in my gut I know it’s cancer but I’m going to feel like a massive fool if I find out within the next few weeks that it’s not.

If it is cancer I feel like I will have to reorder a lot of priorities in my life and get started on healing using every tool I have available to me. But I can’t know until I get the results.

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

rexsan20 | @rexsan20 | Mar 31, 2022

Sorry to ask you this.......but did your bowels change..........my bowel looks very oily /greasy....Did yours?

rexsan20 | @rexsan20 | Mar 31, 2022

In reply to @hlj "I have an endoscopic ultrasound at Roswell on Monday. It sounds like I will get some..." + (show)

Hey, I went to a GI doctor on Peachtree Dunwoody Rd. What was your doctor's name if you don not mind?

rexsan20 | @rexsan20 | Mar 31, 2022

In reply to @hlj "Hi all, I thought I'd turn here for some feedback and support, as I'm terrified that..." + (show)

@hlj

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

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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?

hlj | @hlj | Apr 2, 2022

In reply to @rexsan20 "I will be praying for you. I also have been concerned about myself. I do have..." + (show)

Yeah, the elastase test can show pancreatic insufficiency, which is typically caused by either pancreatitis or PC. I also have oily/greasy stools. I would definitely advocate for yourself to get the MRI sooner just to be safe, even if that means getting a new GI. Your concerns should not be dismissed. Thank you for the prayers ❤️

beachdog | @beachdog | Apr 3, 2022

In reply to @hlj "Yeah, the elastase test can show pancreatic insufficiency, which is typically caused by either pancreatitis or..." + (show)

My wife was a negative finding for the elastase test, BUT she was already using Creon and wasn't told to stop taking it before being tested.

hlj | @hlj | Apr 4, 2022

I had an endoscopic ultrasound done today at Roswell, and there was no indication of any pancreatic abnormality. On the one hand, this is massively reassuring, but on the other hand, this leaves me with no explanation for my other test results indicating severe pancreatic insufficiency. I don’t know if I should remain concerned about the possibility of a diffusely infiltrating pancreatic cancer that can be difficult to detect even via EUS (as per what I’ve read online) or rest assured that an advanced endoscopist with a cancer institute would have seen something if it were there?

hlj | @hlj | Apr 4, 2022

In reply to @beachdog "My wife was a negative finding for the elastase test, BUT she was already using Creon..." + (show)

From what I’ve read, the Creon doesn’t impact the results of the elastase test, as the Creon is derived from pig enzymes and isn’t picked up by the test.

hlj | @hlj | Apr 7, 2022

My EUS results came back normal. I’m massively relieved, on the one hand, but also still extremely concerned about the fact that I do have severe pancreatic insufficiency without any identified (and hopefully benign) cause. My GI ordered Zenpep for me, which I started taking yesterday, but told me that seeing him for an appointment and identifying the cause of my pancreatic insufficiency is “not urgent.” I had a chest CT at Roswell today and have a follow up appointment with them next Tuesday, so we’ll see what comes of that. I really feel that linking with a new GI specialist is warranted at this point.

susanpmadigan | @susanpmadigan | Apr 8, 2022

We are all praying for you that this will be a good outcome. It’s great that you are advocating for yourself !!!

hlj | @hlj | Apr 8, 2022

In reply to @susanpmadigan "We are all praying for you that this will be a good outcome. It’s great that..." + (show)

I just wish I didn't have to advocate for myself so much; it would be nice if the doctors had more concern on their end, or more of a desire to help me get to the bottom of this. I've developed a pulsating sensation under my ribs. I'm trying to tell myself it's the Zenpep I started taking, but of course my anxiety says that this is yet another symptom of pancreatic cancer 🙁 I'm just feeling so frustrated and lost. I'm going to advocate for myself as much as I can at my appointment with Roswell on Tuesday, but depending upon the outcome, I'm contemplating reaching out to UPMC and/or the Cleveland Clinic.

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