Do any doctors have balls to take care of someone!

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Do any doctors have balls to take care of someone!

by LeeLaurie646 on Sun Jan 20, 2013 07:16 PM

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My husband was diagnosed with an IPMN in his pancreas last May. The surgeon sai we need to take out your pancreas but first you need to gain 20 lbs because you will lose 20lbs with the surgery. So we went home and the man tried eating as much as he could and the best he could do was 6lbs then he got pneumonia gained another 7 of waterweight, the surgeon didn't think the pneumonia was part of the pancreas thing and sent him back to his family doctor. Meanwhile no one is coordinating whether he has gained weight, nor done stool testing to see if he was absorbing his food or whether the worsening of his blood sugars was a sign of anything. I finally I just said, let's get it over with, to which they said fine, what's a good day? Not once was heard we need to this tomorrow, it was a mutual finding of a date so in Sept we came up with a date of Oct18 with a pre-op CAT scan for 10-6. On the 6th we find out that the IPMN has crushed his portal vein and he now has many collateral veins that precludes surgery. We then go to Mayo who tell us there is nothing they can do either. Biopsies keep coming back negative for cancer but that could be just that they never hit the actual spot of cancer. He never gained more than that first six pounds, in fact he lost those when the diabetes got worse. Now he can't have surgery, they can't do chemo or radiation and now he has venous congestion which no one seems to want to do anything about, which then developed into a lingual hernia, which no one seems too worried about even tho my husband is extremely uncomfortable. No doctor, the surgeon nor the internal medicine guy I thought would be one to coordinate care, suggests anything as to what to do next, how to take care of his pain, or the hernia problem! No one can even tell us what to expect next or given him a timeline. He sits home and in between his 8 or so BMs a day tries to deal with a comfortable position so that he can get some sleep and to add insult to injury disability doesn't kick in until May! I can't find anything online as to what will happen next or what a doctor should be doing. I'm pretty sure the pancreas surgeon doesn't want anything to to with him because he'll bring down his success numbers if he dies on his watch. Even a bigger question is if it isn't cancer and is just this inflammatory thing crushing his portal vein, what the hell will happen next! Anyone have even remotely similar experience and what kind of doctor has the balls to take care of him?

RE: Do any doctors have balls to take care of someone!

by aus6321 on Wed Jan 23, 2013 05:56 AM

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Have they done any blood tests that look at IgG4 levels?

RE: Do any doctors have balls to take care of someone!

by bestfriendmom on Wed Jan 23, 2013 04:47 PM

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I am so sorry that you have had such a terrible time with the doctors.  The only thing that I can tell you is to keep going until you find a doctor who is willing to do something for your husband.  When my mom got sick one of the doctors told us that he didn't know why we were trying so hard to do anything for her since she was going to die in a less then a year.  I found  new doctor who believed that he could beat her cancer. A year later we are still fighting this horrible cancer.  It has now spread to her liver but the doctor has not given up.  I do not know where you live but I would go to a hospital like the Cancer Center of America or a place that only deals with cancer patients.  We are lucky that we live 50 miles from Moffitt Cancer Center where she is getting the best care possible.

You and your husband are in my prayers.

RE: Do any doctors have balls to take care of someone!

by philipstphilip on Thu Jan 24, 2013 07:41 PM

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My wife has stage 3 panceatic cancer and has been on the folfirinox regimine since last november. She has a tumor the size of a golfball that hasn't responded well to the current chemo. Our Doctor refered us to Dr. Evans  at Froedert & The Medical College of Wisconsin. If you google him you'll see his accomplishments. He is one of the best in the midwest and more. He might be the guy you're looking for.

God Bless!

RE: Do any doctors have balls to take care of someone!

by LeeLaurie646 on Sat Jan 26, 2013 08:22 PM

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Only slightly elevated so yes he has some inflammation. He actually looks really good on paper, no jaundice, only slightly elevated creatine levels because of another issue he has, but his CA9-19s fluctuate wildly they'll be in the 50s one time and in the 350s the next. Still, it doesn't matter all the doctors care about is wether they get paid. I could have managed his care better if I had the ability to tell them what to do when! If we had gone to Mayo straight out of the box we wouldn't be in this position. Waiting is what got him where he is. I am currently lying next to him and listening to very loud gurgles from his intestines as he finally gets some sleep and watching him jerk in pain while dreaming! However, best that can be done is "sorry you are in pain do you need some Percocet or Celebrex?". Balls was the question to which I am convinced there is no answer!

RE: Do any doctors have balls to take care of someone!

by bestfriendmom on Mon Jan 28, 2013 01:34 PM

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I dont think believe the doctors dont' care. I think that with this type of cancer so many doctors just dont' know about it and the strides that have been made in the last few years.  Until I got my mother to a doctor who knew about PC and knew how to treat it, I was extreme frustrated with them.  They all keep telling me the same thing we will make her as comfortable as possible but she is going to die and there was nothing they could do about it.  Now that we are at Moffitt Cancer Center the doctors never talk about her dying they talk about what they are going to do to cure her cancer.  Find the doctors that have the balls to fight and dont' give up until you do.

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