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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.
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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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1 ReactionI appreciate you so much for responding to me. 🙂 This was my MRI results back in Dec. 2021. I have the MRI w and w/o contrast. This MRI was compared to the MRI I had back in Feb. 2021.
The MRI in Dec. showed cystic lesion in the pancreatic tail on series 7 image 9 measures 0.9 x 0.9 cm. It has not significantly changed.
Impression: Stable cystic lesion in the pancreas which represent a simple pancreatic cyst or side branch intraductal papillary mutinous neoplasm.
You may understand this better than I do. My GI doctor said I will have to follow up MRI.
Thank you SO Much for your support.
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1 ReactionWhat are your thoughts?
@rexsan20, I am not a doctor and cannot give a medical opinion. It sounds like your GI specialist is monitoring the cyst and may not think that any treatment at this time is warranted. But you should ask this question to your doctor to understand what the plan is. Keep asking questions until you understand the MRI results in laymen's terms and feel comfortable with the next steps.
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1 ReactionDid you get my response about the pancreas cyst?
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1 ReactionThank you
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1 ReactionHi 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
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.
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1 ReactionThank you so much for the response. Depending upon the results of the elastase test, I do plan to have Roswell Park give me a second opinion. I did ask my PCP for some cancer marker tests but she has refused so far, as has my GI specialist. Despite my continued weight loss, I believe they are both brushing me off simply because I also have an anxiety disorder, which is unfair and frustrating. My body seems to be wasting away, and not having any answers is terrifying.
May I ask about your own cancer journey? What were your symptoms and treatment experiences?
@hlj, I completely agree with @bb21 about getting a second opinion with another GI specialist. Keep in mind that the symptoms you describe do not definitively mean you have cancer or pancreatic cancer. Weight loss is a common symptom for many different conditions.
Clearly you need answers. I have my fingers crossed that it is something that can be easily managed. If you would like to request an appointment at Mayo Clinic, here is more information on how: http://mayocl.in/1mtmR63
What can you do to keep yourself calm as you seek answers?