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

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

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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What is UPMC?

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@hlj

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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Good luck on Tuesday. We are all hoping and praying that you will be fine. Keep us updated

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In reply to @csage1010 "What is UPMC?" + (show)
@csage1010

What is UPMC?

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The University of Pittsburgh Medical Center

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@hopeful33250

Hello @rexsan20

As Colleen, @colleenyoung, said it all depends on the location and type of cysts. Have you read the scan report to see where they are located and the size? About 10 years ago, I was diagnosed with pancreatic cysts (there are four cysts as I recall). I certainly panicked when I learned of them.

I had an ultrasound endoscopy and they were determined to be IPMN, (which can be cancerous or benign), but nothing that looked terribly serious. As I have a history of carcinoid cancer of the upper digestive tract, my GI doctor follows up every two years with an MRI of the liver, pancreas, etc. So far no major changes in size or type.

Talk with your doctor and see what follow up is best for you. How are you feeling? Any digestive tract symptoms?

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This is how it is stated on the MRI: Pancreas: The pancreas has normal intrinsic T1 hyperintensity in its parcenchyma. A cystic lesion in th epancreatic tail on series 7 image 9 measures 0.9 x 0.9cm. It has not significantly changed, when remeasured in the same plane on prior exam from 6/02/2021. There is not enhancement within this structure. No main ductal dilation or pancreatic parenchymal atrophy.

Not sure what this means?

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@rexsan20

This is how it is stated on the MRI: Pancreas: The pancreas has normal intrinsic T1 hyperintensity in its parcenchyma. A cystic lesion in th epancreatic tail on series 7 image 9 measures 0.9 x 0.9cm. It has not significantly changed, when remeasured in the same plane on prior exam from 6/02/2021. There is not enhancement within this structure. No main ductal dilation or pancreatic parenchymal atrophy.

Not sure what this means?

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Hello @rexsan20

As I'm not a medical professional, I can't explain the results to you. I do recommend that you contact your doctor's office and ask if a nurse or a PA can sit down with you and answer your questions.

Always remember that you can get a second opinion if you don't feel that your concerns are being addressed.

How are you feeling, @rexsan20? Any new symptoms?

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The chest CT ordered by Roswell showed 2 lung nodules, but they did not believe any follow up is needed regarding these or anything else. They recommended a local GI, but it’s uncertain whether they will take on my case, as they need to review my records first. They also recommended a rheumatologist in light of my joint and muscle pain and weakness. I’m still not sure what to do. Roswell has essentially washed their hands of me since they’ve found no evidence of malignancy thus far. They agreed to see me again in 4 months, but that seems like a long time to wait when I fear that I’m in a state of cancer cachexia. I know Roswell believes they have ruled out malignancy, but I'm not reassured. They refused to do a biopsy because they didn't see a mass on the EUS, but from the literature I've come across, there are cases of diffuse pancreatic carcinomas that don't form a distinct tumor. I had reached out to the Cleveland Clinic in desperation and now have an appointment with one of their GI surgeons, which I hope means they are in agreement that a biopsy is the only way to definitively rule out cancer.

I know that there are many causes of pancreatic insufficiency, but blood work and imaging ruled out chronic and autoimmune pancreatitis, and cystic fibrosis would've been diagnosed at birth. At this point, to me, it seems like an Occam's razor situation; I'm also reminded of the phrase "if it looks like a duck, swims like a duck, and quack likes a duck, it probably is a duck." I have so many clinical signs and symptoms of pancreatic cancer and it's just terrifying.

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@hlj

The chest CT ordered by Roswell showed 2 lung nodules, but they did not believe any follow up is needed regarding these or anything else. They recommended a local GI, but it’s uncertain whether they will take on my case, as they need to review my records first. They also recommended a rheumatologist in light of my joint and muscle pain and weakness. I’m still not sure what to do. Roswell has essentially washed their hands of me since they’ve found no evidence of malignancy thus far. They agreed to see me again in 4 months, but that seems like a long time to wait when I fear that I’m in a state of cancer cachexia. I know Roswell believes they have ruled out malignancy, but I'm not reassured. They refused to do a biopsy because they didn't see a mass on the EUS, but from the literature I've come across, there are cases of diffuse pancreatic carcinomas that don't form a distinct tumor. I had reached out to the Cleveland Clinic in desperation and now have an appointment with one of their GI surgeons, which I hope means they are in agreement that a biopsy is the only way to definitively rule out cancer.

I know that there are many causes of pancreatic insufficiency, but blood work and imaging ruled out chronic and autoimmune pancreatitis, and cystic fibrosis would've been diagnosed at birth. At this point, to me, it seems like an Occam's razor situation; I'm also reminded of the phrase "if it looks like a duck, swims like a duck, and quack likes a duck, it probably is a duck." I have so many clinical signs and symptoms of pancreatic cancer and it's just terrifying.

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What are your symptoms?

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@hopeful33250

Hello @rexsan20

As I'm not a medical professional, I can't explain the results to you. I do recommend that you contact your doctor's office and ask if a nurse or a PA can sit down with you and answer your questions.

Always remember that you can get a second opinion if you don't feel that your concerns are being addressed.

How are you feeling, @rexsan20? Any new symptoms?

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No symptoms I do t think just stool is oily: greasy

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@rexsan20

No symptoms I do t think just stool is oily: greasy

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Good morning @rexsan20

Has your doctor given you any information about the stool and whether or not this is a cause of concern? Have you sought another opinion from another doctor?

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@hlj

The chest CT ordered by Roswell showed 2 lung nodules, but they did not believe any follow up is needed regarding these or anything else. They recommended a local GI, but it’s uncertain whether they will take on my case, as they need to review my records first. They also recommended a rheumatologist in light of my joint and muscle pain and weakness. I’m still not sure what to do. Roswell has essentially washed their hands of me since they’ve found no evidence of malignancy thus far. They agreed to see me again in 4 months, but that seems like a long time to wait when I fear that I’m in a state of cancer cachexia. I know Roswell believes they have ruled out malignancy, but I'm not reassured. They refused to do a biopsy because they didn't see a mass on the EUS, but from the literature I've come across, there are cases of diffuse pancreatic carcinomas that don't form a distinct tumor. I had reached out to the Cleveland Clinic in desperation and now have an appointment with one of their GI surgeons, which I hope means they are in agreement that a biopsy is the only way to definitively rule out cancer.

I know that there are many causes of pancreatic insufficiency, but blood work and imaging ruled out chronic and autoimmune pancreatitis, and cystic fibrosis would've been diagnosed at birth. At this point, to me, it seems like an Occam's razor situation; I'm also reminded of the phrase "if it looks like a duck, swims like a duck, and quack likes a duck, it probably is a duck." I have so many clinical signs and symptoms of pancreatic cancer and it's just terrifying.

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I don't know if this would be helpful, but two resources come to mind. One is the Pancreatic Cancer Action Network and the other is the Lustgarten Foundation. I think they might be able to steer you in the right direction or perhaps better address your concerns. Hope this helps.

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