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I NEED HELP! Pancreas cysts I am a wreck

Posted , 9 users are following.

jennifer85396
jennifer85396

Hello my name is Jennifer I am 51 years old.  I went for a Thoracic spine MRI a week and a half ago.  Ordered by my pain management doctor.  Had MRI on a Thurs, went to him on the following Mon.  I was told I had a 18 x 27 mm cyst on the tail of my pancreas, a renal nodule and some gallstones.  I went to my Gastro doctor yesterday, I was crying and in a panicked state.  He explained these cysts are usually found acidentally, he thinks it is a benign cyst and it is in a good place if it needs to be removed because the tail is a better spot for removal.  I just have so many questions and my doctor is wonderful, but he has other patients too.  He took blood work to check for some sort of chemical that would show cancer or something that would show a problem.  He gave me a script for the MRI and said it was a "routine" under the priority column.  My question is how do i handle this I am scared to death.  If the radiologist thought it was cancer would he have called my pain management doc right away? instead of just sending it over?  please I need advice

0 likes, 22 replies

22 Replies

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  • judith50134
    judith50134 jennifer85396

    Posted

    Hi Jennifer, I was diagnosed in 2016 with chronic pancreatitus and was in total shock as I am not a drinker and I don't smoke. Anyway I have had a couple of MRI's and a cat scan and to the best of my knowledge the person administering the test always calls the doctor first and he/she then tells his patient. You can learn a great deal from this blog and others as to what to eat, etc. and still live a long life as long as you follow the guidelines to keeping healthy with this awful disease. Best wishes.

  • tina65505
    tina65505 jennifer85396

    Posted

    I have had several Puedocyst on my pancreas, one broke on it's own and just 2 months ago they biopsied the new cyst, came back no cancer. A cyst is a concern as they can be cancerous sometimes, i am glad it was found so that the appropriate treatment can be done. Please try not to get to worked up, remain vigilant with your Dr's. If you need to talked feel free to contact me, it helps to talk with someone who has been fighting problems with the Pancreas. I wish you luck !!  Get as much info as you can about your issue.

  • rosa06975
    rosa06975 jennifer85396

    Posted

    Hi Jennifer. I’m in the same boat and I am also getting into a frenzy. Half convinced myself that I have pancreatic cancer. I have many issues with acid reflux this summer so I have an endoscopy. As I always complained about pain in the left flank the specialist sent me to have an ultrasound scan and this week my gp confirmed that I have a 2cm cyst in the pancreas. He has contacted the specialist to have her views on my case but at the moment I don’t know what to expect. I’ve been having pain in the left side of my body for quite a while thinking that it was my posture but now I can see that it was probably the cyst. I will call my gp on Monday to see if he has heard from the specialist and what to expect. The waiting game is very frightening 😔. I hope you have good news soon from your doctor and please feel free to contact me. It feels good to be able to speak to someone freely about this issue.

    • jennifer85396
      jennifer85396 rosa06975

      Posted

      Hi Rosa, waiting is torturous ! everytime the phone rings I jump. My Gastro doc took blood Tuesday morning and I was told results should be in by end of the week, which is today.  Have to go back for another MRI next week.  I can tell you from what I read that Pancreas pain is usually in upper middle of abdmen.  And most cysts are benign.  It’s so stressful because my mind runs away with me.  Lets try to be possitive. Good Luck
  • deborah_8675309
    deborah_8675309 jennifer85396

    Posted

    Hi Rosa, I’m new here too and this is my first comment. I’m 46 yrs old and I had 2 cysts discovered on my pancreas by CT scan a little over a year ago and the CT was not ordered for that reason. I was referred to a specialist and I had a MRCP about 7 months ago and they were the same size. I was told that I could have them monitored with the MRCPs every 6 months to a year or have a biopsy which the doctors seemed to push , they didn’t do any blood tests.  I decided to go with the MRCPs but I’m worried that might be a mistake but I’m terrified to have a biopsy.  I hope you get answers soon and that everything turns out okay.  I go for another MRCP in April and hopefully the cysts will be the same size. 
    • rosa06975
      rosa06975 deborah_8675309

      Posted

      Hi Deborah. Thank you for your reply. Do you have any symptoms? It seems most people don’t have any but I’m wondering is this is because they don’t know them.  At the moment I have a constant pain on my side and upper back . I had this before but it comes and go which i find quite odd. I will speak to my doctor today so ask what to expect. Thank you for your support and I hope yours don’t give you any problems. 🤗

  • deborah_8675309
    deborah_8675309 jennifer85396

    Posted

    Thanks for responding and I actually meant to respond to both Jennifer and Rosa, so you can probably definitely tell I’m new to this smile I have pain on my right side almost like a dull ache or burning but the specialist told me that the cysts should not be causing me any pain? Has your doctor mentioned an endoscopic ultrasound where they do a biopsy? I really don’t want to do it because I read it can cause Pancreatitis and if it is cancer that biopsies can cause it to spread. 
  • rosa06975
    rosa06975 jennifer85396

    Posted

    Hi Jennifer and Deborah. Sorry Jennifer if we have hijack your post, but the information you find on internet is so varied and alarming that been able to talk to people in your same situation is ver helpful.

    I haven’t seen any specialist yet so I don’t know what procedure they might suggest and I hope once I see the specialist he/she will advise what is the best thing to do and what are the risks. I have just been told at the moment to wait to be called by the specialist/hospital but I don’t think it will happen until the new year. My main problem is that having been told that I have a lesion in the pancreas and have quite a few symptoms, now I cannot relax and feel very scared all the time. Is not going to bra good Christmas I think 🙄

  • tina65505
    tina65505 jennifer85396

    Posted

    I have an update i would like to share, I see the surgeon last Friday in Chicago and i must have surgery from the head, body and tail of the Pancreas i have a major blockage. I have 3 things they are going to do first try and drain the bile duct with surgery, then repair an opening which causes food to get caught and it has made me sepsis and to do several more biopsies. I had one biopsy of a cyst on the Pancreas revealing no cancer, but Dr. is almost certain the duct is filled with cancer. I have been fighting Pancreatitis for yrs and have had way to many ERCP's and stents with no relief. I had my bile duct rerouted over 14 yrs ago due to impacted stones. I have see the video as to the procedure which i will be cut from the bottom of the breastbone to my belly button it is called a Roux-en Y hepaticojejunostomy,   also Possible Distal Pancreatectomy or possible Puestow. There will be several biopsies taken.  I know this is all so complicated and would like to answer any questions if i can, to hopefully help someone else. I had renal cell carcinoma 6 yrs ago got lucky and the cancer was removed with surgery. I like the surgeon as he seems very well informed and very nice and compassionate Dr.  I just wanted to give an update as i have posted a few times before.

    • judith50134
      judith50134 tina65505

      Posted

      Prayers and very best wishes Tina that you have a successful result after surgery. Please keep us updated.
    • rosa06975
      rosa06975 tina65505

      Posted

      Best of luck Tina. Keep us posted.

      I have finally received the referral from my GP to the Gastroenterologist and the earliest appointment is on the 7th February!

    • tina65505
      tina65505 rosa06975

      Posted

      Thank you rosa06975, Good luck with your appointment, keep us all posted as i will do the same !
    • jennifer85396
      jennifer85396 tina65505

      Posted

      Hi Tina, you have been through a lot and you are so strong.  My Gastro doc took a blood test of the CA 19-9 pancreas test..have you heard of it, he told me I am in the normal range of 39.  But I am reading that 37 in the normal cut off.  I dont't have any symptoms and my cyst was found during a thoracic spine MRI. Tomorrow I am going to have a MRI with and without contrast.  I am very nervous, any thoughts would be appreciated..thank you

    • tina65505
      tina65505 jennifer85396

      Posted

      Hi jennifer85396, yes i have read about that blood test and asked Dr. about it and he told me that the test is not as reliable as they would like, meaning could show negative results only to find the test are actually positive. So my Dr. has chose not to use the blood test CA 19-9. I have had a pseudocyst on my pancreas and it broke on it's own , then after my second to last Ercp and they were trying to get into the main Pancreatic duct a cyst developed the next day and the stent they put in migrated out on its own. I would certainly talk to your Gastro Dr. about how accurate the CA-19-9 blood test is. We are all here for you if you have more question's and i wish you the best of luck, please keep in contact, as this site has become a great great way to talk about these issues i am so glad to be apart of it. I have had many many years of fighting this problem and just trying now to get prepared for surgery, i will be having this done in Chicago and i really like my surgeon. jennifer85396 stay positive and do as much research as you can and ask as many question as you need to. I wish you the best of luck ! Feel free to contact me anytime.

    • jennifer85396
      jennifer85396 tina65505

      Posted

      Thank you so much Tina, this site is a God send.  When my doctor saw my Thoracic spine MRI they found the pancreas cyst it is 27x18 mm.  My Gastro said at that size they would not touch it.  It would have to be 2 or 3 cm.  But if the MRI I am getting today shows the cyst to be suspicious, and they decide to take a biopsy, wouldn't they have to remove it anyway? It is in the tail. My doc said my number was 39 and called it the "normal range".  I don't know very confusing and crazy. 

    • tina65505
      tina65505 jennifer85396

      Posted

      I promised a update after i went to chicago, Surgery date set, THEN  this is tough on me to say but i went to emergency room with what i thought was Pancreas. AS im telling the er dr i had nurse showing iv in me.... Then came the 4 baby aspriins and Nitro to follow then it t

      me  OMG i'm having a heart attack i ended up with  a  pacemaker and had an angeogram and peumonia      sorry i am right handed cant

      it y

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