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.

hlj | @hlj | Apr 16, 2022

In reply to @csage1010 "I don't know if this would be helpful, but two resources come to mind. One is..." + (show)

Thank you ❤️

fcancer07 | @fcancer07 | Apr 21, 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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Hi. Hoping everything turned out fine. Was there any update?

hlj | @hlj | Apr 23, 2022

I saw a surgeon at URMC today. While he does not believe a biopsy is warranted at this time in light of imaging results, he did order some blood work. One of them was for the CA 19-9 tumor marker. It was at a level of 10.88 when tested by Roswell on 3/29, and it has doubled since then, to a level of 24. I’m awaiting the results of blood work ordered by my PCP (aldolase, creatinine kinase), which I’m sure will reflect the muscle wasting I’ve been reporting for weeks. I also have a brain MRI on Monday morning to assess for the constant tinnitus and fluid leakage from my ears that I’ve been experiencing for the last few months. I’m awaiting a call back from URMC about linking with their GI Dept as well. It’s just becoming difficult to maintain hope, with my physical state declining in the absence of any solid answers 😔

leighs2011 | @leighs2011 | Apr 25, 2022

I hope you don't have PC but if you do know that people with stage four have miraculously beaten it fifteen years ago and moderate on Cancer Connect PC group. Symptoms sound awful. i am in chronic pain and have PC but the pain is from back not the cancer reoccurrence. I would see a Pain Dr as well. I know how frustrating it is to be in chronic pain and it sucks. Good Luck!

hlj | @hlj | Apr 26, 2022

In reply to @leighs2011 "I hope you don't have PC but if you do know that people with stage four..." + (show)

I'm sorry to hear that you're in so much pain. How long have you been living with PC?

My pain comes and goes, in my muscles and joints, but it's intense when it occurs. I'm awaiting the results of my head MRI. My blood work indicated that I'm on the low level of normal when it comes to creatine kinase, which can indicate muscle wasting due to illness, but my PCP is not concerned because she says that muscle damage would instead be indicated by a high level of CK. I'm consulting with a functional medicine specialist on Monday afternoon, and I'm hoping and praying that he'll order the blood work (for TNF alpha, IL-6, myostatin, etc). and more detailed imaging (such as MRCP) that might reveal more about what's going on with my body and in particular with my pancreas.

hlj | @hlj | May 20, 2022

So my interleukin 6 level came back wildly elevated--the norm is 5 pg/mL, and mine is at 80.90. And my weight loss has continued despite having upped my dosage of my pancreatic enzymes. It's not just the weight loss, it's the muscle wasting--I'm truly starting to look cachetic. Interleukin 6 is a driver of cancer and cancer cachexia. Moreover, I've developed what can be symptoms of a paraneoplastic syndrome; I have lanugo growing all over my body and new freckles/seborrheic keratoses popping up daily. At this point it's hard to believe that it could be anything but cancer. Does anyone have any tips on next steps?

Colleen Young, Connect Director | @colleenyoung | May 30, 2022

In reply to @hlj "So my interleukin 6 level came back wildly elevated--the norm is 5 pg/mL, and mine is..." + (show)

@hlj, something most definitely is going on. I hope you and your doctor get to the bottom of this soon. Any updates on next steps or a diagnosis?

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