May 22, 2010 at 9:21 pm #38198linda-zSpectator
Welcome Gail, echoing many sentiments here. Glad you have found us.
I had intra-hepatic cholangiocarcinoma and had a bile duct removed with about 40% of my liver. 1 out of 25 lymph nodes showed a sign of cancer and there was another very small tumor that the dr. chose to burn instead of remove. (don’t know why to this day).
He was “so certain” that chemo would not be necessary due to his “clear margins” (a term they use often). BUT the oncologist said to be safe than sorry and I had a 3 month round of chemo only.
My first set of follow-up CT scans were cancer free, the next set showed the small burned tumor had returned and had a small “cousin”. I next saw a radiology oncologist who asked why I hadn’t had radiation therapy first, then chemo. I couldn’t answer him because that wasn’t brought up after surgery.
My point here is…..become educated. It has appeared that this cancer is very aggressive and tricky and does just about anything it wants. Why not hit it with all we know about first to knock it out from the start instead of waiting to see what IT has in store for us. I’ve seen many people not have chemo or radiation and have it come back, as well as those that have had radiation first and then chemo that have taken care of it for a longer period of time.
Read up, check this site and please by all means get a second opinion. This cancer doesn’t act like most others! Good luck to you and your husband. Feel free to ask anything of us. We are all here to help each other the best we can….sometimes better than the doctors do.
Linda Z.May 20, 2010 at 12:50 pm #38197lainySpectator
Hello Gail and Welcome to our Family! You have found your husband’s twin! Although Teddy is 77 and post op 5 years.
We were in Northern Arizona and he started itching. First we thought it was a bug bite but when it continued after a week we started thinking allergies. August 1st we were to leave for 2 weeks in Milwaukee to visit our children. That 2 weeks turned in to a 3 month journey. Two days before we left he was still itching and he went for LABS. Upon our arrival in Milwaukee his GP called and told us his Billie Rubin was 5.7. The doctor said if he didnMay 20, 2010 at 11:12 am #38196navy-blueSpectator
Thank you all for the comments and I have mentioned to my husband your comments about chemo.
Margaret, I’m sorry to hear of the diagnosis of your husband. I will keep track of his hopeful recovery.
My husband had a post-hepatic tumor (I believe that’s the right term-his tumor was not contained within the liver or pancreas). I wonder if that makes a difference on determining if chemo/radiation is needed/necessary?
GailMay 20, 2010 at 10:57 am #38195mlepp0416Spectator
As others have said, welcome! Please discuss Chemo with your husbands doctors. My husband also had clear margins after his resection in June 2008 and his doctors said no chemo was necessary. Knowing what I know now I only wish we had insisted on Chemo. My husband Tom presented with a new tumor in Nov ’09 and the new tumor is inoperable, he has been given a 6 month prognosis. All his new doctors now say that if he would have had chemo after the resection he may not be in the position he is in today. Fortunatly, his new doctors did give him radiation and chemo to shrink/kill the new tumor. He has an external drain to relieve the bilirubin levels (unable to place a internal stent) and we are at the 6 month mark (in 2 weeks) and we feel he will beat that 6 months).
So please, please insist on your husband getting at least a few rounds of chemo to err on the side of caution!
Go with God and KEEP KICKIN’ THAT cancer
Margaret (My husband and Cholangiocarcinoma)May 20, 2010 at 10:15 am #38194ashleySpectator
Sorry that you had to join this site to begin with, but very hopeful to hear your husband’s news that the tumor was small and that it was removed through a Whipple surgery with clear margins! Yeah!! I’ve been on this site for almost a year and my advice would mirror what Jen said earlier. Please get a second opinion regarding post surgery chemo, etc. It seems to be more of the norm for this cancer, with or without clean margins. This is a tricky cancer and recurrence is unfortunately very common – even in cellular form that is not visible yet as a tumor. I would assume your husband will also have frequent blood work and his doctors will be trending his CA 19-9 cancer markers for further insight. If you let us know where you are located someone can suggest a hospital/doctor otherwise you can also search the directory yourself for a listing.
Best wishes to you and your husband,
Ashley from CTMay 20, 2010 at 9:44 am #38193gavinModerator
Welcome to the site, although I am sorry that you and your husband had to find us all. We are a friendly bunch here and will help and support you both all the way, so please, feel free to ask a ton of questions and I know someone will be able to help.
My dad was diagnosed in summer 2008 and one of his first symptoms was also the dreaded itching and also jaundice. He had a drain and a metal stent inserted and that sure helped relieve the itching. I am glad to hear that your husband was able to have the whipples procedure and that he had a great outcome from it. I can’t help you with that as my dad never had it, but I know others here have and I am sure that they will be along soon to share their experiences of it. We do have a search function at the top of the page here and you can use that to search for other posts regarding whipples.
I am glad to hear that your husband is eating, albeit it small amounts and that he is able to get around in the house. And I wish your husband every success for a speedy recovery.
My best wishes to you and your husband,
GavinMay 20, 2010 at 4:19 am #38192jennifersMember
I’m sorry you had to look for this site to begin with, but so very happy for the good results your husband has gotten. Good for you both for going in prepared with all the information you did.
One thing I will mention that I have heard other people say and believe quite strongly is having chemo after surgery, regardless of whether doctors feel it is required or not…. I believe many see it as one more way to ensure they get it all, since this is such a tricky cancer. Just something to think about and consider… others may have more information and comments about that!
I hope things continue to go so well for you and your husband!
JenMay 20, 2010 at 4:08 am #3558navy-blueSpectator
I’ve been visiting this site numerous times since my husband (Stephen-45) first had symptoms. Mid-March 2010 he started itching…I told him it was probably the dry weather and to use lotion!
After two weeks of all over itching and lots of research online he made an appointment armed with the info that the itching pointed to liver problems. After blood work and an ultra-sound he then had an MRI. On April 1st (our 4th wedding anniversary) he was told he had a tumor on his bile duct. His Dr. was fairly certain is was cancerous. April 5th he had a drain inserted to drain the bilirubin to hopefully relieve the itching. The drain seemed to provide some relief.
He was scheduled for a whipple 23April. After the 9 hour surgery the Dr. announced the tumor was only 1cm and that he was able to get all of it removed along with half the pancreas and his duodenum. The other great news was that the surrounding lymph nodes showed no signs of spreading and tests results came back negative. The liver, stomach and pancreas were re-attached to the intestine and three drains placed.
Pathology reports verified the tumor was cancer but chemo and radiation would not be needed.
He was sent home just a week later (Friday) with two drains, a G-tube and a feeding tube. That next Monday he had major abdominal pains so I took him to the ER where he was re-admitted for an infection. Another drain was placed to remove the infected fluid (bile) and he spent almost two weeks in the hospital.
He’s home again with just one JP drain (to the pancreas/intestine connection) that drains about 10ml every other day. He’s still on the feeding tube almost 20 hours a day but is also eating solid food. The g-tube is in place but is clamped. He’s eating small amounts of regular food to make sure he knows if certain foods disagree with him. Thank goodness we were able to get the backpack style feeding kangaroo so he has a bit more mobility around the house.
We are very grateful for the removal of the tumor and that the surrounding nodes are negative. I’ll assume he’ll have regular follow-ups with his Dr once he’s recovered from his surgery. He’s lost quite a bit of weight since the initial itching mid-March (220lbs) to today (184lbs). Before all this started he was trying to lose weight…thank goodness he wasn’t doing so great sticking to his diet and had the extra weight to lose!
Although it seems my husband’s situation seems a lot different from most I’ve read on this site I’d appreciate any input.
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