Hello to all. My name is Brandy and I am 28 years old and live in Illinois. I have a family history of MEN1 (grandmother, mother, aunt and uncle) so I knew to watch things. I had a total paraythyroidectomy with one placed in my forearm in July of 2005. They diagnosed me with MEN1 after the surgery since all 4 of my glands were causing problems. During the testing for that surgery they found a tumor on my Right lung and on my Thymus. Both of those were retested in 2007 and are completely the same so it has been decided to leave them alone for now. My insulin level is fine and my gastrin level is only slightly elevated, nothing to be concerned about BUT they found 2 tumors on my pancreas during an abdomenal scan when they were looking for everything because I was diagnosed with Cushings caused by a pituitary tumor…yes, I know, it is rare in MEN1 patients…but hey, I’m a lucky girl. Anyway, I had surgery in Feb 2007 where they removed the entire left half of my pituitary gland because they could not find the tumor but knew from and ACTH test that it was on the left side. Now that I am healed from the Cushings they are wanting me to contemplate surgery on my pancreas to remove these 2 tumors. They say it is due to the sheer size, one of them is 2.5 by 1cm. Here is my question…I firmly believe in having surgery if something is causing you health problems or will in the future or if it is affecting your daily life and can be corrected. Hence the 2 surgeries I have had. However, I have heard nothing good about this surgery. I am not diabetic now but the odds are I will be when I am done. It takes 10-12 days in the hospital and 6-8 months recovery??? Am I hearing worst case scenarios or the general rule of thumb? I need advice to help me decide if this surgery is right for me. I have a husband and 2 children to consider in this decision and am not taking it lightly. Thanks to you all for your understanding.
Did you go through with it? I had two tumors in my pancreas. 80% of my pancreas was removed, all of my gall bladder and spleen. Tough recovery, now I am very active with my kids, ride horses, go sking, and just live it up.Things have gone well for over a year until recently I had 2 mimi pancreatic attacts out of the blue, We are still working on trying to figure out why they happened. I figure I have been living my life with not much concern to the 20 om my pancrease left. It’stime to step it up.
I had a large tumor on my pancreas removed at 23. The surgery and recovery were quite brutal…no lie, but I was only in the hospital for 8/9 days, and after a month laid up, started returning to work. In all, it took me about three months to recover, and over a year before I could roll over in the night and lay on my stomach. I’m now 33 and have had chronic pancreatitis off and on, with only two real hospitalizations for it. In general, no signs of diabetes, and have actually only been told that as a result if the damage to my pancreas reaches 90%. I’m currently undergoing additional testing though to see if I need to take enzymes to help prevent further problems. Honestly, the surgery was the worst part. While I don’t like the problems I can get from pancreatitis and hormonal issues from thyroid problems, life has been “normal” for the most part. The pancreas can be a pretty nasty tempered little organ, so if the doctors think you need to have the tumors removed, I would do it to prevent future damage or problems. Good luck!