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Pancreatic tumor at 28 years old?
After being sick for almost 6 months now, an abdominal MRI has discovered a small tumor on the pancreatic head/tail junction.
My symptoms started 6 months ago as generalized swelling and tenderness of the lymph nodes all over my body, nausea, vomiting, weight loss (I have since gained it all back), enlarged spleen.. etc. There was high suspicion I had mono but all of my tests came back negative.
Fast forward to last month, I started getting really bad epigastric pain and left upper quadrant pain. It would last for a few days and then die down to a dull nagging pain. I felt it in my back sometimes too. I toughed it out until I had another episode only the second episode I had white stools! Freaky!! Then I had a fever of 101.3. For me to get a fever is extremelyl rare. This is only the second fever I've ever had in my entire life. This is what scared me so I decided to go to the doctor. I saw the greatest PA ever. She ordered an abdominal ultrasound which lead to an abdominal MRI which identified the tumor.
I'm just NOT convinced that this could be cancer. Pancreatic cancer at 28 years old is almost never heard of. I'm going to be seeing a pancreatic surgeon at Georgetown University Hospital for biopsy.
What else could this be? Could a cyst or a benign tumor be making me this sick? I'm just not convinced it's cancer. That's just too weird for a 28 year old.
I don't have any family history of this, only my Grandpa got colon cancer at 75 years old. A few people have had their gallbladders removed and my mom and Grandmother have had diverticulitis. A few of my great uncles have diabetes. Nobody has pancreatic cancer.
My symptoms started 6 months ago as generalized swelling and tenderness of the lymph nodes all over my body, nausea, vomiting, weight loss (I have since gained it all back), enlarged spleen.. etc. There was high suspicion I had mono but all of my tests came back negative.
Fast forward to last month, I started getting really bad epigastric pain and left upper quadrant pain. It would last for a few days and then die down to a dull nagging pain. I felt it in my back sometimes too. I toughed it out until I had another episode only the second episode I had white stools! Freaky!! Then I had a fever of 101.3. For me to get a fever is extremelyl rare. This is only the second fever I've ever had in my entire life. This is what scared me so I decided to go to the doctor. I saw the greatest PA ever. She ordered an abdominal ultrasound which lead to an abdominal MRI which identified the tumor.
I'm just NOT convinced that this could be cancer. Pancreatic cancer at 28 years old is almost never heard of. I'm going to be seeing a pancreatic surgeon at Georgetown University Hospital for biopsy.
What else could this be? Could a cyst or a benign tumor be making me this sick? I'm just not convinced it's cancer. That's just too weird for a 28 year old.
I don't have any family history of this, only my Grandpa got colon cancer at 75 years old. A few people have had their gallbladders removed and my mom and Grandmother have had diverticulitis. A few of my great uncles have diabetes. Nobody has pancreatic cancer.
Hi, I sent you a PM and am not sure you got it. I would like some advice on what I have been going thru, very similar to your story. Hope you are still doing well!:-)
Wow I haven't been on this site in a long time! I appreciate everyone's questions and thoughts!
Well where do I begin? lol
After thinking long and hard about what to do, I decided that I did not want to have my surgery with Dr. Johnson. I was just so frazzled and unsettled over him wanting to remove so much and the only reason he gave me was because he didn't want to have to deal with the complications that come from doing a spleen preserving surgery. I went with my gut instinct and got a second opinion from Dr. Choti at Johns Hopkins. He is a surgical oncologist and is a specialist in neuroendocrine tumors. His story was very different from my first surgical consult. First of all, he said that leaving the tumor in and watching it was a bad idea because I'm too young to take the risk of letting it get worse. He wanted to remove it immediately. The second thing he said was that even though these tumors look "benign" under a microscope, they still behave very much like malignancies and can still metastasize (Thank God I went to someone who understood how these unusual tumors behave). The third and final confirmation that Dr. Choti was the right surgeon was he said if I opted to do an open surgery instead of laparoscopic then he could save my spleen. I said, heck yes open that baby up! Who cares about a stupid scar when I can save an entire organ??
I had the surgery on June 29th, 2011 at John's Hopkins. I have a 5 inch incision down the center of my abdomen and he removed about 45% of my pancreas but I still own a spleen! The surgery lasted 6 hours and since I tolerated the surgery so well, I didn't have to spend any time in the ICU. I went straight to a med surg floor and spent 6 days there recovering. I still had the drain in my stomach and IV's but no NG tube, no need for insulin. My potassium dipped pretty low for a while but they fixed that easily. Overall, my care at Johns Hopkins was just outstanding. The nurses on the Sidney Kimmel Cancer Center unit were some of the best nurses I have ever had! They were so attentive and compassionate. They even treated my family members like VIPs! The residents under Dr. Choti were also wonderful and if I ever needed anything, they were at my bedside within 10 minutes. It was amazing there. I'm sure Dr. Johnson is a great surgeon but I wish he had given me more of a voice in what I wanted in my care. If I express extreme concern and strong feelings against something, then it would have been nice to give options. Overall, I know I made the right choice and I am very very happy with my outcome.
It has been just over one year since my surgery and I feel great! My mini pancreas doesn't secrete enough digestive enzymes to digest properly now so I do have to take Creon but my blood sugar has been completely fine. Digesting is still somewhat of an issue but overall, I have been doing extremely well. In addition to the tumor, I was also diagnosed with celiac disease so I'm on a gluten free diet and that has also been making me feel amazing. I was supposed to have my annual follow up scan in June to see if I'm still ok but it seems as though Dr. Choti and I have a problem meshing our schedules! I won't get to see him until the end of October now.
Other news, I graduated college in May with my bachelors in physiology and neurobiology, took the MCAT in June, and I'm applying to medical school now! I have been offered 3 interview invites which is a good sign. I hope one of them offers me an acceptance and I can continue on with my new healthy life!
If I can offer any advice for someone who is facing this, that is to just keep pushing for answers. If you don't feel comfortable with a doctor's opinion then find a second opinion. You have a choice in all of these things so make sure you fully understand what is happening. I appreciate all of the messages on this post. You guys really make me feel special :) Things are going really well now.
Well where do I begin? lol
After thinking long and hard about what to do, I decided that I did not want to have my surgery with Dr. Johnson. I was just so frazzled and unsettled over him wanting to remove so much and the only reason he gave me was because he didn't want to have to deal with the complications that come from doing a spleen preserving surgery. I went with my gut instinct and got a second opinion from Dr. Choti at Johns Hopkins. He is a surgical oncologist and is a specialist in neuroendocrine tumors. His story was very different from my first surgical consult. First of all, he said that leaving the tumor in and watching it was a bad idea because I'm too young to take the risk of letting it get worse. He wanted to remove it immediately. The second thing he said was that even though these tumors look "benign" under a microscope, they still behave very much like malignancies and can still metastasize (Thank God I went to someone who understood how these unusual tumors behave). The third and final confirmation that Dr. Choti was the right surgeon was he said if I opted to do an open surgery instead of laparoscopic then he could save my spleen. I said, heck yes open that baby up! Who cares about a stupid scar when I can save an entire organ??
I had the surgery on June 29th, 2011 at John's Hopkins. I have a 5 inch incision down the center of my abdomen and he removed about 45% of my pancreas but I still own a spleen! The surgery lasted 6 hours and since I tolerated the surgery so well, I didn't have to spend any time in the ICU. I went straight to a med surg floor and spent 6 days there recovering. I still had the drain in my stomach and IV's but no NG tube, no need for insulin. My potassium dipped pretty low for a while but they fixed that easily. Overall, my care at Johns Hopkins was just outstanding. The nurses on the Sidney Kimmel Cancer Center unit were some of the best nurses I have ever had! They were so attentive and compassionate. They even treated my family members like VIPs! The residents under Dr. Choti were also wonderful and if I ever needed anything, they were at my bedside within 10 minutes. It was amazing there. I'm sure Dr. Johnson is a great surgeon but I wish he had given me more of a voice in what I wanted in my care. If I express extreme concern and strong feelings against something, then it would have been nice to give options. Overall, I know I made the right choice and I am very very happy with my outcome.
It has been just over one year since my surgery and I feel great! My mini pancreas doesn't secrete enough digestive enzymes to digest properly now so I do have to take Creon but my blood sugar has been completely fine. Digesting is still somewhat of an issue but overall, I have been doing extremely well. In addition to the tumor, I was also diagnosed with celiac disease so I'm on a gluten free diet and that has also been making me feel amazing. I was supposed to have my annual follow up scan in June to see if I'm still ok but it seems as though Dr. Choti and I have a problem meshing our schedules! I won't get to see him until the end of October now.
Other news, I graduated college in May with my bachelors in physiology and neurobiology, took the MCAT in June, and I'm applying to medical school now! I have been offered 3 interview invites which is a good sign. I hope one of them offers me an acceptance and I can continue on with my new healthy life!
If I can offer any advice for someone who is facing this, that is to just keep pushing for answers. If you don't feel comfortable with a doctor's opinion then find a second opinion. You have a choice in all of these things so make sure you fully understand what is happening. I appreciate all of the messages on this post. You guys really make me feel special :) Things are going really well now.
1 Comments
Hello, just had a question. I’m 36 yrs old and was just diagnosed with a 2cm pancreas cyst. They want to do a mri to see how to treat the cyst. I have very bad nausea and sometimes pain that goes to the back. Can cyst make you feel this bad? I also feel more tired and seem like I lost a bit of weight. Could it be a cancer cyst? They surgery options given were drain it or remove it. Depending on why type of cyst it is.
I am writing in hopes of hearing the follow up to your situation in case you come by too post on your results. What a difficult choice, and your so young. I do hope it all worked out alright for you. I too am waiting for my mri results been having pancreatitis symptoms which are similar to the ones of cancer. I had cancer before, so its always scary when the results arent in yet. I am hopeful. I loved your attitude towards your cancer, and the people here are very supportive. I hope you post a follow up, and that even if you dont get to be a doctor, your already an inspiration by your compassionate concern, and care towards others. Praying you are well.
It has been almost 4 months since your last post. How are you coping and what treatment did you decide to undergo? Wait or remove the tumor? Wishing you the best and hope your recovery is bearable.
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In my nursing career; I have been a nurse for 14 years, have I only taken care of one patient in your age group with Pancreatic CA.
Any family history of cancer puts you at risk for any type of cancer. I think I have a family history of 8-10 different types of cancers.
I wish you all the best. Hang in there. :))