New Diagnosis Is It Klatskin?

My husband was just diagnosed with a bile duct cancer that is within 1-2 cm of the bifurcation according to the notes on the EUS discharge instruction.  I'm confused if this is a Klatskin, or if it really makes any difference in prognosis whether it is or not.  This is devastating news, he just had vague symptoms of lightheadedness and slight nausea.  This looks like a useful message board and I would appreciate any comments.  Thanks.

 

On 7/20/2007 ranchbara wrote:

My husband was just diagnosed with a bile duct cancer that is within 1-2 cm of the bifurcation according to the notes on the EUS discharge instruction.  I'm confused if this is a Klatskin, or if it really makes any difference in prognosis whether it is or not.  This is devastating news, he just had vague symptoms of lightheadedness and slight nausea.  This looks like a useful message board and I would appreciate any comments.  Thanks.

Hi,

My name is Iris and I am from the Netherlands. From what I read from your short message it looks like Klatskin to me. However, I sincerely hope that your husband and you could be sort of lucky. It seems to me it hasnot gone too far yet and than, surgery is a good option.

My husband is having the same disease, discovered at the end of March. But his cancer has gone all the way into the bileducts and badly infected his liver. They tried surgery, but hat to stop almost immy.

I hope your husband has a better chance and wish you and him all the best. Will you keep me posted about the medical investigations and results? My thoughts are with you both.

Kind regards,

Iris.

     He is starting a combination radiation/chemotherapy regimen next week and we are hoping to be on the liver transplant list by Fall.  They said that if they did resection surgery he would probably not be eligible for a transplant.  We are so overwhelmed.  How is your husband doing and what is his prognosis.  It is helpful to be able to have someone to talk to about this who understands the disease.  We have only known this for one week, and we have not come to terms with it yet, does one ever?

On 7/21/2007 Flower1 wrote:

 

On 7/20/2007 ranchbara wrote:

My husband was just diagnosed with a bile duct cancer that is within 1-2 cm of the bifurcation according to the notes on the EUS discharge instruction.  I'm confused if this is a Klatskin, or if it really makes any difference in prognosis whether it is or not.  This is devastating news, he just had vague symptoms of lightheadedness and slight nausea.  This looks like a useful message board and I would appreciate any comments.  Thanks.

Hi,

My name is Iris and I am from the Netherlands. From what I read from your short message it looks like Klatskin to me. However, I sincerely hope that your husband and you could be sort of lucky. It seems to me it hasnot gone too far yet and than, surgery is a good option.

My husband is having the same disease, discovered at the end of March. But his cancer has gone all the way into the bileducts and badly infected his liver. They tried surgery, but hat to stop almost immy.

I hope your husband has a better chance and wish you and him all the best. Will you keep me posted about the medical investigations and results? My thoughts are with you both.

Kind regards,

Iris.

 

 

On 7/21/2007 ranchbara wrote:

     He is starting a combination radiation/chemotherapy regimen next week and we are hoping to be on the liver transplant list by Fall.  They said that if they did resection surgery he would probably not be eligible for a transplant.  We are so overwhelmed.  How is your husband doing and what is his prognosis.  It is helpful to be able to have someone to talk to about this who understands the disease.  We have only known this for one week, and we have not come to terms with it yet, does one ever?

On 7/21/2007 Flower1 wrote:

 

On 7/20/2007 ranchbara wrote:

My husband was just diagnosed with a bile duct cancer that is within 1-2 cm of the bifurcation according to the notes on the EUS discharge instruction.  I'm confused if this is a Klatskin, or if it really makes any difference in prognosis whether it is or not.  This is devastating news, he just had vague symptoms of lightheadedness and slight nausea.  This looks like a useful message board and I would appreciate any comments.  Thanks.

Hi,

My name is Iris and I am from the Netherlands. From what I read from your short message it looks like Klatskin to me. However, I sincerely hope that your husband and you could be sort of lucky. It seems to me it hasnot gone too far yet and than, surgery is a good option.

My husband is having the same disease, discovered at the end of March. But his cancer has gone all the way into the bileducts and badly infected his liver. They tried surgery, but hat to stop almost immy.

I hope your husband has a better chance and wish you and him all the best. Will you keep me posted about the medical investigations and results? My thoughts are with you both.

Kind regards,

Iris.

 

Hello,

Yes this is allways a terrible message to get. My husband and I are (only) 61 years old. Have allways been very sportive and were looking forward to our pension-years (which is in Holland when you become 65 years). Had a lot of plans for then.

The first week after hearing the news was unbelief, horrified, anger and sadness. And then we started talking. We are married for almost 33 years and also loved each other deeply. We have two wonderful sons, who are young men now (29 and 27 years old). They are social, have a lot of friends and doing very good in their jobs. And my husband and I decided that we have had a rich life up till now. Why should these things happen to others and not to us? So we decided: no bitterness, only trying to feel the richness of what we had and have. Our sons are backing us up very warmly, helpfull where-ever they can. We want to keep this feeling, even when things will get hard and difficult. And we know it will, for my husbands days are really counted. The doctors said we have a few months; we hope it may be a little more because he is so strong.

Yes, we came to terms. Peter went back to work for 3 full days and he even picked up sport again, he plays squash. We know the timebomb is ticking. But we enjoy every morning waking up together and looking in each others eyes. After the first shock, I think we even found richness in these weeks. Lots of family and friends and even friends of our sons who come to visit, or send cards and e-mails.

I hope I can help you a bit, so if you have more questions .... come and ask me.

For now I promise I will think of you and your husband and I very  much do hope that he can have surgery and you will have a longer time together.

Love, Iris.

 

Iris:  Thank you for your reply.  Does your husband have a stent?  They mentioned that my husband might need one at some time, and he has been feeling worse the last several days and I wonder if his bile is not getting through as much as previously?  Your family support sounds wonderful; we have 2 children, ages 19 and 20, and that was the hardest part so far, telling them about their dad.  They are both in university but only an hour away.  We are 3 hours from the doctors and the next 5 weeks will be difficult, going back and forth every day but my husband wants very much to sleep at home every night, whenever possible, so we will all pitch in to make that work.  How fast does this disease typically progress?  I am so sorry your husband's surgery failed, is he taking any medications now to help?  I was looking at my family's geneology a few months ago, and one of my ancestors came from the Netherlands to America in the 1600s, so we have more in common.  We also have hope in common, that whatever time we each have left with our spouses will be filled with love.  Thank you again. Kathy

 

On 7/21/2007 ranchbara wrote:

Iris:  Thank you for your reply.  Does your husband have a stent?  They mentioned that my husband might need one at some time, and he has been feeling worse the last several days and I wonder if his bile is not getting through as much as previously?  Your family support sounds wonderful; we have 2 children, ages 19 and 20, and that was the hardest part so far, telling them about their dad.  They are both in university but only an hour away.  We are 3 hours from the doctors and the next 5 weeks will be difficult, going back and forth every day but my husband wants very much to sleep at home every night, whenever possible, so we will all pitch in to make that work.  How fast does this disease typically progress?  I am so sorry your husband's surgery failed, is he taking any medications now to help?  I was looking at my family's geneology a few months ago, and one of my ancestors came from the Netherlands to America in the 1600s, so we have more in common.  We also have hope in common, that whatever time we each have left with our spouses will be filled with love.  Thank you again. Kathy

Hi Kathy,

Thanks for your message. Yes Peter has a stent. A plastic one was inserted during an ERCP investigation and a week after surgery they took it out and brought in a metal stent. Before the initial stent he was very itchy, all over his body. And looked very yellow. The stent quite soon helped and for some weeks now he is not yellow anymore and the itch completely is gone. The average lifetime of a stent (or in fact I should say of the bileduct wherein it is placed) is about 3 months. But at the last control our doctor explained "average means for one person 6 days and for another one year".

Peter refused chemo. That is because it would not cure the bile duct cancer itself, it would only may be would take care of not spreading. Since he feels so good after that stent, he would not spoil the good weeks (or months) we have for just a little bit lifetime more. For chemo almost allways immediately spoils the quality of life you have. It is his decision, but I am glad he decided this. We are, when he is not at work, having good days. We make bicycle tours, or just sit in the garden and are having plans for a couple of days out to one of our small islands. Just waiting in fact till the rain stops.

Kathy, this is a very slow growing cancer. We don't know how much time we have got. The doctors told us just a few month, but when I look at Peter I have the feeling he might do somewhat longer. In my heart I am hoping for a year or so. Yes, telling the boys was difficult. They new about the first investigation and came home that night. All four of us cried, but it also felt so warm. They were there, saying they would do anything to help us. In stead of only coming home some of the weekends now, they give extra phonecalls. Sometimes have a plan to do something together with their dad and ringing me in the daytime to ask how I am coping. This is also rich. In August Peter and our youngest son Erik are going for a gliding tour and they are very much looking forward to that.

I hope you keep me posted about what is going on with you and your husband. I know now that a disease like this is as difficult and hard to the caregiver. Sometimes it seems even harder. You are the one who tries to find food that he likes; make the appointments for doctors and hospital; informs the family, etc. Therefore I wish you extra strength.

Much love for all of you, Iris.

 

Iris:  I am just wondering how your husband is, it has been several months since we corresponded.  Your words were very encouraging to me, and I appreciated your taking the time to respond.  I hope very sincerely that he remains strong.

The Klatskin's was confirmed for my husband and since July he has had two stents placed to relieve bile obstruction, and has been placed on the liver transplant list.  However, his MELD scores are pretty low and he was not approved for the clinical trial which would have given him additional points towards transplant.  He also did radiation then chemotherapy which was very hard on him.

As Christmas approaches, I just wanted to let you know that my prayers are with you, your husband, and everyone who suffers from cancer.