Hello from a frustrated wife
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For your information:
http://www.cyberknife.com/cyberknife-treatments/liver/how-used-treat-cancer.aspxDiana,
Sounds like your husbands surgery is exactly what I had with the exception that it was the right lobe and half of my left that was removed of the liver. Biggest complication I had was continual bile leakage (not 100% sure where, but probably where they took my small intestine (larger organ/duct size than bile duct) and attached it to the liver (lots of tiny bile duct connection points)). I had 2 abscesses, one 3 weeks after surgery when they took out my main drain way too early and one the day after I got home from NY. I had a drain added and it stayed in for almost 2 months before the leakage stopped approximately 3 months after surgery. Difference between us also is that I had no tumor involvement on the liver itself, it was isolated in the bile duct only. It’s great that surgery is an option. Do you have a date yet? We wish you the best of luck and keep us posted!Hi Rachel,
Welcome to the site. That would be great if you could introduce yourself to us all as that way your posts won’t get lost in other threads. If you go to the “Introductions” board that is found under the Discussion Boards then you can introduce yourself there. Here is the link to the Introductions page –
http://www.cholangiocarcinoma.org/punbb/viewforum.php?id=18
Then just click on the “post new topic” icon on the top of the right hand side of the screen. After doing that it will bring up a new page, then just write a title to your new thread then post away! Hope that helps and lookin forward to reading your posts and hearing about your son.
Best wishes,
Gavin
Gavin:
I am a new member and don’t know how to use this website. I see you have a lot of posts. I just want to introduce myself and post my son’s story.
How can I get in the introduction forum?Rachel
Hi Diana,
Welcome to the site. Sorry that you had to find us all and I am sorry to hear about your husband alos, but I’m glad that you have joined us all as you have come to the best place for support and help, and I know you will get tons of both from everyone here. There’s not really much I can add to what the others have already said to you, but I wanted to stop by and welcome you here.
Craziness and having to learn and use new words to us, yep, we’ve all been through that so we sure know where you are coming from! After my dads diagnosis, one of the new words that I kept using was photodynamic therapy and that certainly was a new one on me! No wonder your head is spinning right now, I know that mine was too!
Please know that we are all here for you and we sure do know what you are going through right now and how you are feeling. Coming here and all the great people here certainly helped me through this and I am sure that it will help you as well. And if you have questions then ask away and we will do what we can to help in answering them. Please keep us updated on how your husband gets on. We care.
My best wishes to you and your husband,
Gavin
Wow, you all are great!
I’m still learning at a mad pace about all this, so some of this terminology makes my head spin, but I can say that the CyberKnife has not been brought up as an option. The docs aren’t sure that his tumor CAN be resected and won’t know until they get in there and get a look at it. We do know it was too dense to drill a stent through.
The surgery they have planned for him will remove his bile duct, his gall bladder, the left lobe of his liver (it’s atrophied after not draining correctly for however long it was) and attach his small intestine directly to the remaining part of the liver. So yeah, it can’t be done non-invasively. I don’t think it’s a Whipple, but it might be considered a modification. Again, I’m still learning.
It certainly is encouraging how your eyes light up at “surgery” and “resection.” I’ll take that as a good sign.
Thanks for the support and kind words. I’ll try to keep the stress (and my language) under control and keep everyone up to date as things progress.Good morning Lainy,
I don’t want to start the day by having a debate with the forum matriarch (you!). But… I think we need to get this right for the sake of our new member. So please forgive me for being argumentative.
Your Teddy had CyberKnife treatment *after* Whipple, on a *secondary* tumor. This is very different from using CyberKnife on a primary extrahepatic tumor before Whipple.
Primary extrahepatic tumor sits inside the bile duct. Bile duct is a thin tube 4-7mm in diameter (thinner than a pinky). CyberKnife uses high intensity radiation to burn the tumor. I believe it’s virtually impossible to burn the tumor inside the bile duct and NOT damage the duct itself. Even if it was possible, the dead tumor would still be sitting there, blocking the flow of bile.
So I stand by what I wrote. When we are talking about *primary* tumors, I believe this is true:
Intrahepatic CC: CyberKnife might be an option
Extrahepatic CC: CyberKnife is NOT an optionThe usual disclaimer applies. I’m not a doctor. Please seek professional medical advice from a qualified doctor.
Best wishes to all,
EliHi Diana, I’m 40, resection on 9/14/11. I was out of the hospital in 9 days, but had several unplanned ‘return’ trips for abscesses. Recovery isn’t the end of the world, that’s for sure. I’m 5 months out and started chemo 5 weeks ago (4 sessions of treatment, one bloodwork day) yet I am still able to go to the gym 3-4 days a week and have gained all of the weight that I lost back too. It’s a long journey, this web site is great and everyone on it can completely understand where you are coming from.
I never got hung up on the ‘why did this happen to me’, I just dealt with it. You can’t look back, only forwards and having a plan with a great team of doctors is the key. We all wish you and your family luck as you start this difficult journey….
Eli, when Teddy’s CC returned after the Whipple it returned where the duodenum used to be and that is where they did the C.K.
Diana, welcome. My wife is about the same age as your husband. Her symptoms first showed up three days after she turned 44. I know exactly what you are going through.
One piece of advice, if I may. Try your best to manage your stress and frustration. Prolonged, daily stress can be very harmful. It *can* trigger illness (speaking from personal experience here). Seek professional help if you have to. Your husband needs you in the best possible shape.
Wishing you and your husband the best,
EliP.S. Lainy mentioned CyberKnife. It might be an option if the tumor is inside the liver (intrahepatic CC). As far as I know, CK is not an option if the tumor is in the bile duct outside the liver (extrahepatic CC).
Diana,
Welcome to the site. Please keep us posted on your husband’s treatment. It is surely an emotional roller coaster. I’m glad to hear they are talking about doing a resection.
Lots of prayers,
Susie
Dear Diana, welcome to our extraordinary family! Around these parts when we hear surgery/resection we are elated. What got me through was my husband’s strength that he passed on to me and he was the one with the CC. It was so important to him that I stay strong and so I did. Yes, we do learn a whole new language, one we had never heard of before. I am curious, that if the CC is only 2CM have they mentioned Cyber Knife. It is a non invasive lazer and if the tumor has not Met and is under 7CM it is a very effective way to have it removed. The best news is they are talking surgery, your husband age and the fact the tumor is small. You have come to the right place for help and support, you are NOT alone. You never know how strong you are until “strong” is the only choice you have!
Diana-Welcome and sorry you had to find us. As you wander through this site, you will find your post will sound very familiar. I remember having a cheat sheet because I could not remember what the official name of my cancer was!
I have found cancer has given me my new favorite quote “Until you walk a mile in there shoes…”. I remember before cancer wondering, why did people need all these fund raisers, they have insurance!! God sure found a strange way to explain it to me!! Our stories happen to the neighbor, a friends cousin…. not us!!
I am a CC survivor!! There is HOPE! I will be 3 years cancer free May 24, 2012. I have an amazing story to share with you, you can read at thetelegraph.com under christmas miracle or on my FB page (Catherine Sims Dunnagan).
I am alive because of God, 2 strangers and Dr. William Chapman at Barnes-Jewish Hospital at St. Louis MO. There is HOPE!!
Lots of prayers-CathyDiana. I am the one with CC and I think it is harder on the caregiver than the patient. My husband has been a saint through all of this but I know he is exhausted and frustrated that he can only do so much. Our faith and trust in God is what gets us through each day. The friends I have met on this website are amazing and so supportive. I feel so bad for you and your family because when the news is fresh it is the hardest to accept. My prayers are with you. I have had two resections and yes the recovery takes some time but they are not bad.
Lisa
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