Advice Needed: Drs Recommend Whipple But Are Unsure If I Have CC
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You responded so I had to ask! Lol. Just got off the phone with my Kaiser surgeon and he said he would give the edge to Stanford over UCSF even though both are great. So with that in mind I grew with you that I should move the appointment up. Even though my Kaiser surgeon says I should have the surgery this month he agrees that an external second opinion is good to have.
Oh, you WOULD ask me that. IF it was me, not being sure Kaiser would pay, and it is 2 weeks away, and I could swing the payment, I would go in as soon as I could, probably for peace of mind.
BTW, make sure you take the records from Kaiser with you and if you have any questions write them down and be ready.Humor is really important, Lainy. Better to laugh than cry about it. My appt with Stanford is on 12/16. I could get in earlier but I was going to try and Kaiser to pay for a second opinion. Chances are slim but I thought waiting another week might be worth it? Do you think I should just go ahead and take the earlier appt?
Hi, Victor. I think both Hospitals are great. When Teddy’s CC returned he had Cyber Knife which I think was first used at Stanford. The trick, Victor, is to keep the CC at bay until that CURE which is around the corner appears.
IF you end up with a Whipple, do not be afraid. It is a long recovery but we love the word surgery as a lot of patients are not candidates for that chance. Think of it as an architect redesigning your innards! Sorry, but Teddy and I got through everything with humor and I have always wanted to say that! When do you go to Stanford?Thanks Lainy for your words of encouragement. For my second opinion I have scheduled a consult with Dr Jeffrey Norton at Stanford and am waiting for the scheduler at UCSF to get me in with Dr Eric Nakakura. I’m sure both places are outstanding but is there one that’s better at CC than the other? I’m super thankful that my wife signed us up for PPO through her work, even though it doesn’t start till 1/1.
I know CC is hard to diagnose, but I was so hopeful that the FISH and CA-19 negative results would put me in the clear. The other thing that bothered me about Kaiser is them not even exploring anything besides the Whipple or trying to do further testing. They haven’t even referred me to an oncologist.
Dear Victor, welcome to our remarkable family and the best place to be for CC support. Wow! what a ride you have already been on. Sorry but I am thinking the person doing the stenting is not doing the best job! My husband had CC in exactly the same place and had an aborted Whipple after a 4 hour surgery and the real deal 3 weeks later! He was 73 at the time. In all honesty it is a huge surgery but NOT life threatening. Heart surgery is threatening not a Whipple. Explained to us by several surgeons.
When first reading your post my mind was going no, no, no surgery without a 2nd opinion and then I saw the magical word…..Stanford and UCSF! GREAT. If I remember correctly, Kaiser is not the best for CC.
You are on the right track now and need to be secure with your CC team! CC is a crazy, scary and rare Cancer and you have a right to be leery. With that said, we also have many stories on here of great success and want to see more. Trust yourself, the rest will follow! When first diagnosed you will start out walking slowly and before you know it you will be running with the pack!
Sometimes CC DX can be very difficult to nail down but remember that you have a young age on your side and are making very wise decisions especially to go to Stanford and UCSF. I just know you will feel a difference being at one of those 2 places.
And NO, NO, NO I would never have surgery where it is not proven what I have. Now, with CC as with other surgeries sometimes a Surgeon just does not know what is really going on until he gets in and sees.
Keep on reading as knowledge is our best tool for fighting CC. Below is a site you may find helpful and please keep us posted as we truly care!http://cholangiocarcinoma.org/newly-dx/
Some background:
I’m 39 and have always been relatively healthy. Beginning of August I had severe abdominal pain. After a few hours I finally went to ER at Kaiser San Leandro where I was told I had pancreatitis. My LFTs were off the charts. I stayed in the hospital for a couple of days where they did an ERCP on me. They couldn’t find any gallstones even though they thought I passed one. The day after I was discharged my wife noticed I was jaundiced so back we went. Another ERCP but this time they put a stent in. After a couple of days of my bilirubin showing some improvement I was discharged. Again, the day after discharge I had severe abdominal pain and was again diagnosed with pancreatitis. This time the hepatology surgeon came to see me and said he didn’t think it was gallstones. They did a CT scan and saw that my stent had fallen out and it looked like I had a slightly fatty liver. The dr said it usually occurs in obese patients and at 215 at 5’11 j could stand t lose a few pounds but I wasn’t obese. They scheduled me for an endoscopic ultrasound at Kaiser SF. Two days after discharge my lab results showed my bilirubin going back up so I went back to ER but this time at Kaiser SF so I could make sure I get that endoscopic ultrasound done. They went in and looked around and saw some abnormality at the head of the pancreas and some inflamed lymph nodes. They did a biopsy of the lymph nodes and pancreas. They also tested me for IGG4 autoimmune disease. All tests came back negative. They also put a stent in me again.
After a week in the hospital the hospital I was getting my labs checked every couple of days. When the bilirubin started to go back up they called me back in and saw through an MRI that the stent had fallen out again. This time they placed two in there. So after getting labs done every couple of days my levels finally got back to normal after about a month. By now the yellowing and itching had gone away. 2 weeks ago they went to remove my stents. One had fallen out which was fine, but the when they took the stent of rom the common bile duct out the GI dr noticed the drainage hasn’t improved. He tried to open it up with a balloon but something was pushing back against it so he put the stent back in place. He also did a scrubbing and sent that sample as well as the old stent for cytology and it came back showing abnormal cells. He said they weren’t categorized as cancer, but there was a possibility it could come to that.
Last week I went back in for a Spyglass so they could get a better look. He found what appeared to be a hyper vascular lesion about 1.5 cm in the lower part of the CBD. He said it was suspicious for CC so he did a biopsy on it and sent it for a biopsy as well as a FISH test. Once I started doing research on CC I became a nervous wreck., mostly because I have a wife and two young girls. Yesterday he tells me that the FISH test and CA-19 markers came back negative, and the biopsy was non-diagnostic. I’m thinking great, I don’t have cancer. He then bursts my bubble saying these tests can only rule in cancer, not rule out. The possibility of cancer is still there and the only way to know for sure is to have the Whipple and send it out for pathology.
Additionally, over the last 4 months I’ve lost about 30 pounds. 20 of it when I first was in and out of the hospital. I think some was from being jaundiced and some from being on NOO or liquid diet only. The last 10 pounds was mostly me eating better (low fat and a lot less carbs and sugar) over a couple of months as well as more exercise.
I have a few questions.
1) How likely is it that the FISH and CA-19 markers are wrong?
2) If they’re unsure about what I have how can they recommend the Whipple, a procedure so complex?
3) if it is CC is 1.5 cms big and would I still be in a relatively early stage?
4) I’m getting a second opinion. I’ve booked one with Stanford and am getting one with UCSF. I can probably only afford to go with one of them because Kaiser won’t refer me out. Which one would you choose and why?
5) The doctors believe that if I have CC I have a good prognosis since I’m younger and healthy otherwise, and that it’s probably a early stage. Are they just blowing smoke up my ass because everything I’ve read just depresses me.
6) Is there anything else this could be besides CC or a benign tumor?Thanks so much for any advice or input. I’ve read a lot on here the past few days. I’m hunted by what many of you have been through.
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