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

Thank 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?

I have a history of obesity, thus diabetic and soft stools from IBS. I suddenly had acute pancreatitis in summer of 2017. diagnosed as idiopathic...no known reason. A couple of months later a resident doing clinic visits ask if could check my lipase since it had not been retested since my release from the hospital. It was higher than when I was released, not real high but above normal. My primary doctor decided to send me to Duke GI group to be evaluated. I had an upper endoscopy that was clear but perhaps indication to watch for..Intraductal Papillary Mucinous Neoplasms (IPMN). I was watched for a couple of years with MRI's, change in symptoms of which I had none. Then in September 2020, one GI specialist just wanted to make sure that things were okay and ordered another Upper endo to see if secretions were in the bile duct that could be cancerous. They also ordered a CA19-9 and it was 100 (norm 0-40). They then saw a tumor that had grown in few months. I consulted with Oncology and a surgeon in the same day and the team decided to go Chemo first and then surgery. Tumor was confined to head of pancreas with no vascular involvement. Did chemo from November to Jan. 2021 and due to good response and the fact that chemo was working havoc on my platelets, we decided to do the Whipple surgery. Tumor was larger than expected but still confined and surgery went well. Removed 25 lymph nodes of which one was positive. Genetics revealed that I had a rare type found only in 1-2 % pf Pancreatic cancers and high to become resistant to treatment. I hve since had lesions found in liver and thus considered metastacized. I am fighting this even though it is probably fatal but so are many things. I decided that whatever time I have, I want to live, to love my husband, kids and grandkids even harder. "We" have to keep our heads up and looking forward with positivity or we just waste our days. Smile, laugh, enjoy life. We are here to support you and remember that your symptoms be many things.

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

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

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

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

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.

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

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.