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    lucky1571 wrote on Russ's wall

    Hi! How R U doing? I just found out that I have a 1cm tumor in the body of the pancreas. I have been having this pancreatic pain radiating to back since Jan. Went to Penn Med, they did an endo ultrasound and found the tumor. In june had mri, nothing showed. Thank God, they found it early. Suggesting Proton therapy and chemo. Second option was to remove pancreas. Surgeon thinks this could be a genetic cancer, where it could keep coming back in the pancreas, that's why they suggest removing pancreas. It is usually rare. I don't think I can handle a surgery at this point, and the complications that may occur. I just started eating a little better, due to taking pain meds. Did gain 5 lbs, but still only 95 lbs. Having pet scan next week. I really like the team at penn med. Proton therapy is clinical trial. But I would rather go that route 1st. It's like having the brcg gene where people don't have the cancer but get the breast and ovaries removed. Will probally have genetic testing done, especially for my family. Any suggestions. Hope, you are well. Thanks

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    • Russ' Avatar
      Russ

      Hey lucky1571, I am doing pretty good...the usual long term side effects: diabetes; neuropathy; pain; fatigue; nausea; etc. But they are all minor inconveniences compared to where I was at 13+ years ago. I am so sorry to hear about your misfortunate with another tumor, (albeit small), but like you said they caught it early. I once read an article about this family in the south. Their family had 9 pancreatic cancer victims, and it was genetic. Many members of the family were voluntarily having their pancreases removed. Also... did you see the article I posted as a question? It is about a woman here in NJ who had chronic pancreatitis and could not eat because of excruciating pain, so they implanted a feeding tube. She lived with the feeding tube for a little over one year. They sent her up to the University of Minnesota Medical Center where she had to live for 3-4 months. In January of this year they removed her pancreas, and implanted islet cells from her pancreas into her liver, and the liver is acting as a pancreas and producing insulin...amazing! She says she is now eating what she wants and doing well. So it is not out of the ordinary to have the pancreas removed. Do a little more research on the removal of the pancreas. I will do the same for you. The ultimate decision is yours. If the doctors are saying it is genetic perhaps your family members should be checked. I too liked the University of Pennsylvania Medical Center...my surgeon was great, as was the nursing staff during my stay. They are truly special people. Unfortunately my surgeon, the chief surgeon of Gastroenterology, passed away 2-3 years ago...you'll never guess from what? Yep...pancreatic cancer! They say he was still performing surgery/Whipple procedures up to 3 months before he passed away. If I were you I would go with the first option...treatments, (the tumor is small). In the meantime you should research the removal of the pancreas, and some of its options. This way you'll be prepared if in the event you decide to go that route. Like I said, I am going to do some reach myself. My heart goes out to you, and I will pray for you lucky1571.
      My best to you,
      Russ

      about 3 years ago
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    lucky1571 posted an update

    Hi! I just found out that I have a second tumor 1 cm in the body of my pancreas. I am going to Penn Med. suggesting Proton therapy and chemo. MRI didn't even show tumor. Had endo ultrasound that's how they found the tumor. I am post whipple dec. 2012 and had chemo, chemoradiation, chemo, finished in aug 2013. Starting have pain in jan. when eating and it was getting worse. I thought it was from bile reflux. Pain was in pancreas radiating to back. Seen surgeon who did my whipple, he said this is usually rare, thinking it could be genetic. Mri didn't show cancer anywhere else, thank you God. Getting pet scan next week. Proton therapy is clinical trial. The other option is to remove the pancreas, which is not a good option for me at this time physically, also, would leave me as a brittle diabetic. Surgeon feels if this is genetic, there is a chance it could reoccur. Anyone on this site, had a second reoccurrence and used proton therapy? And chemo. I still have problems with my digestive system, slowed motility. I have started taking pain med to help. I have been able to eat better, did gain 5 lbs., still only weigh 95lbs, at 5 6. It's a slow process, always a trial and error with food. I thank God it was caught early.

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    lucky1571 wrote on Russ's wall

    Hi! Russ. I don't know if I found the reason for my pain, but I had an upper endo ultrasound done in hospital, showed 1 cm mass on pancreas near bile duct. The burning pain I get is similar to the pain I had before my pancreatic cancer diagnosis. CT scan in Jan. did show a dilated bile duct. So, I'm hoping this is a blessing in disguise. Waiting on biopsy report. Have you talked to anyone who had proton therapy for pancreatic cancer, if I have to have an treatment I was interested in that type of therapy. My endo didn't show acid of bile reflux, but esophagitis. Needing more prayers, and hopefully caught early is tumor is positive. Any suggestions? Thanks

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    lucky1571 asked a questionPancreatic Cancer

    Found 1 cm mass on pancreas, near duct.

    8 answers
    • deSmile's Avatar
      deSmile

      luck1571,

      While waiting for my biopsy results from my local GI doctor I contacted a leading pancreatic center, "just in case" to get their opinion. They preferred not to wait and to do their own testing and offered me a one day evaluation. I visited them the following day, had a CT scan which was positive for cancer, and a treatment plan was immediately put into place. I had surgery 48 hours later. Any mass on the pancreas is not good news and it should be removed. I suggest you get a second opinion and not wait as some cancers, like mine, are very aggressive. With PC you need to be your own best advocate, take the initiative. Good luck.

      over 3 years ago
    • Russ' Avatar
      Russ

      Hi Lucky1571, I am so sorry that you are still suffering so much, and there is nothing I can do for you or recommend. I will continue to pray for your comfort, and to ease your pain. Please let us know the results of your biopsy, and perhaps treatments to hopefully ease your pain. My best to Lucky1571...Russ

      over 3 years ago
    • Rick1970's Avatar
      Rick1970

      Hello Lucky,
      If you haven't already done so, please request that your oncologist order a PET/CT scan of your full torsal when it's time for your next CT scan. My wife has a full torsal PET/CT scan after every 5-6 chemo cycles or 2.5 to 3 months. The resulting PET/CT images that her oncologist has shown us (slice by axial slice) have been very enlightening regarding the status of her cancer. Best wishes and prayers for better tomorrows. Rick

      Example PET/CT Scan & Scanner Images: https://www.google.com/search?q=pet+ct+scanner&tbm=isch&tbo=u&source=univ&sa=X&ei=HNbFU7qpAsWgyAT39oL4Dg&sqi=2&ved=0CDwQsAQ&biw=840&bih=637#q=pet+ct+scans&tbm=isch

      over 3 years ago
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