My 42 year-old husband
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- This topic has 67 replies, 17 voices, and was last updated 3 years, 11 months ago by Carrot2018.
December 22, 2016 at 7:40 pm #93294positivitySpectator
I am still having issues with two ERCPs performed on my mom in two weeks. She has lost more weight and feels full from food quickly. Even though she has CC, can this appetite loss or sense of being full quickly from the stents? She feels the ERCPs made her worse. She did get pancreatitis from the first ERCP and other issues which I am sending a complaint to the hospital. These doctors need to be looked at closely also if they have poor communication with patient. The first GI doctor didn’t even follow up with us, and another doctor in group was sent in her place to follow up. I was very displeased with this entire GI group, and for several other reasons.
Did your husband lose his appetite after stents in ducts? Lose weight or feel different separate from his CC?December 5, 2016 at 1:08 am #93289debnorcalModerator
I am sorry to hear that your husband’s surgery did not go well. I know firsthand how devastating it can be to get the patient into surgery and then not be successful in the procedure. My husband’s first surgeon aborted surgery and told us the tumor was inoperable. That was the worst day of my life. Thank goodness we then started searching for second opinions and did find an amazing surgeon (Dr. Carlos Corvera, UCSF), who told us he could successfully resect the tumor, which he did. That was nearly two years ago, and every day we are thankful that we didn’t give up after the first attempted surgery.
There are some cc experts that will provide remote second opinions, some require an in person visit. Either way, it’s usually worth the effort. Another important reason to seek out an expert opinion is that, even if surgery is not an option, there is a big difference between the way general medical facilities and medical facilities with cc expertise approach treatment. The expert centers use a multidisciplinary team approach to come up with the best form of treatment for the patient. Often, the treatment involves options that are cutting edge and have not yet trickled out to the general medical community. Therefore, the experts are able to treat cc as more of a chronic condition with a reasonably good quality of life. We have many patients on this board that can attest to that.
I wish you and your husband all the best. Stay strong and please return here whenever you need support or guidance.
DebbieDecember 4, 2016 at 10:03 pm #93288lainySpectator
Dear Victoria, I am so very sorry to read about your husband and the best I can do is to tell you to get another opinion. Make sure that whomever you see has experience in the CC field as well as the Hospital the ONC goes too. I am happy to read that hubby is healing well and quickly. Wish I could help more but we are heavy believers in and and 3rd opinions. Different Doctors see things, well, differently. Please keep us updated on your husband as we truly care.December 3, 2016 at 12:52 am #93290spokanemomSpectator
I am posting this from my husband’s room in ICU. His surgery did not go as we had hoped. The margins by both the pancreas and liver were positive. His bifurcation was inside the liver and both sides had cancerous cells. Rather than stop everything, the surgeon chose to respect the entire right lobe, which showed more cancer cells, and hope to resect part of the left node to get a clear margin and then perform th Whipple. Well, each of the 3 resection on the left lobe had cancer cells, so they stopped and did not do the Whipple. My husband will need 4 weeks to recover from the surgery before beginning either chemo or radiation. The surgeon said he is not a candidate for further surgical treatment.
I am devastated. He was in surgery for 16 hours. No tumors other than the 2cm one in the common bile duct were found, only cancer cells. I feel like I have a few weeks to figure out what to do next. He is so strong and healthy and his recovery from a 16 hour surgery has amazed the medical staff.
Please help me determine our next steps. We will have another consult with the oncologist we were referred to. I hope there is a list of questions we can ask him about his experience with cc.November 23, 2016 at 4:29 pm #93291growinga2ndliverMember
“Are we crazy to be moving so fast towards surgery given everything they have discovered so far?”
“Did placing the stent right over the tumor and/or taking spy bites to biopsy spread the cancer cells further? This did relieve the jaundice though.”
During my initial diagnosis process, I developed pancreatitis after a local doctor (NOT part of my surgical team) installed a stent and performed an ERCP. It was very painful, but I got over it in a few days. Your husband’s young age should aid in bouncing back quickly. Fortunately, the cancer cells for me appears to have not spread as the local doctor “was careful not to try to do too much”.
I had liver resection surgery about a month later and I’m glad I did while there was a window of opportunity.
I hope this provides some help and comfort.
Wishing you the best,
BarryNovember 23, 2016 at 5:05 am #93292marionsModerator
SpokaneMom…I too would like to welcome you to our site. Other than not having this cancer at all, stage 1 is about as good as can be allowing for the best chance of a curative surgery. I think that an experienced surgeon – such as the one you have chosen – should put your mind at ease. Good time to celebrate Thanksgiving.
The surgery is complex and requires some healing time, but that’s a small price to pay for a potentially curative operation.
Having said that, it never hurts to obtain a second, professional opinion from a physician “very” familiar with this cancer.
So glad you joines us. Please keep us informed, we are in this together.
MarionNovember 23, 2016 at 3:37 am #93293lainySpectator
Dear Victoria, welcome to our remarkable family and the best place to be for CC support. It sounds like you are doing all the right things. My husband was Stage one 10 years ago and had a Whipple surgery. Surgery is the only sure cure so far. Surgery is a word every CC patient hope to hear. Your husband has such a great chance as they caught the CC early and his age is an advantage. I am so glad the surgery is so soon. This monster can grow quickly. It is true that the surgeon never knows what he will find until he “gets in there”. With all that said I still feel you have a lot of good things going for you! Try to enjoy your Thanksgiving and I will be sending prayers and lots of good spirit and there will be so many of us from right here in that surgery room. Well, you know what I mean. Please let us know how everything goes and just wishing you the very best of everything. Below is a sight you may find helpful.
http://cholangiocarcinoma.org/newly-dx/November 23, 2016 at 12:59 am #12782spokanemomSpectator
I am so relieved to find this website. Thank you, thank you, thank you to those that put it together!
My 42 year-old husband had been experiencing abdominal “discomfort” since mid-Sept. 2016. It was getting worse, so he saw a nurse practitioner on Oct.31, 2016. Blood tests showed elevated ALT and ALK PHOS. An ultrasound on Nov.4, 2016 showed a calcified gallbladder, with multiple stones (one bigger than 1.5cm), and enlarged intrahepatic bile duct. He was scheduled for laparoscopic gallbladder removal on Nov.15. However, his bilirubin numbers kept climbing so the surgeon thought a gallstone might be blocking the common bile duct, which would explain the enlarged duct as well. He scheduled a gastroenterologist to perform an EUS and ERCP on Nov.14 with the plan to remove the gallstone blocking the bile duct in preparation for surgery on Nov.15.
Well, it was not a gallstone blocking the common bile duct. It is a tumor. The gastroenterologist, Dr. Wichit Srikureja, installed a stent in the pancreas, and a stent in the common bile duct, after taking biopsy “spy bites” of the tumor. He told us that based on what he saw, he would not trust any pathology that came back as non-cancerous. My husband developed pancreatitis and sepsis from the ERCP and was in the hospital Nov.15-19. While in the hospital, we received the pathology report that said the tumor in the common bile duct, 2 cm long and 1 cm below the bifurcation, was cancerous. The official diagnosis was Hilar Cholangiocarcinoma. They did a CT scan, which did not show any other suspicious spots anywhere else. But it also did not show the tumor they know is there, maybe because the stent is compressing it, and maybe because these tumors inside the bile duct often don’t show up on scans. Based on what they know now, they think it is Stage 1. It sounds unusual to find this cancer in Stage 1, and they are preparing us that more cancer might be discovered once he is in surgery. The CA 19-9 was negative. The CEA was negative.
Numerous doctors all recommended surgery be performed to remove the tumor and gallbladder, and all agreed that Dr. Juan Mejia would be the best option. We live in Spokane, WA. I know that it is strongly recommended to get to a major medical center, and the closest one to us is UWMC in Seattle (5 hours away by car). However, it seems like all the doctors we have seen agree that surgery is the only option for a potential cure and my husband is a great candidate for surgery. The post-surgical follow-up might need more discussion (whether or not he needs radiation and/or chemo).
Our plan right now is for surgery on Dec.1. Dr. Mejia hopes to not have to resect part of the pancreas or liver, but he said it is rare that at least one is not needed. He has extensive experience in both. Post surgery, the liver board would review his case and make recommendations on chemo/radiation. We have already had a consult with the potential oncologist, Dr. Peter Schlegel, who agreed that pre-surgical chemo or radiation was not needed in this situation.
Are we crazy to be moving so fast towards surgery given everything they have discovered so far?
Did placing the stent right over the tumor and/or taking spy bites to biopsy spread the cancer cells further? This did relieve the jaundice though.
My husband is feeling so much better, probably because the stents are working and bile is once again flowing as it should. His bilirubin is almost normal. He will be on IV antibiotics for the sepsis until the day before surgery. Thank you so much for your feedback.
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