Topic: My father's bile duct cancer?

Hello,
My father had itching for four months and was told he had scabies which he didn't. After tests we were told a small tumor in bile duct. He did have jaunders. A brushings test was inconclusive and a biopsy will be taken soon. My father is 82 years old with quite a few health issues . He had a metal stent put in during ercp 2 weeks ago.  I have been reading for over two weeks day and night and understand the grim outlook but here are my concerns which I would like your help with.  His tumor is less than 1c. My father has a healthy appetite and no pain.  The surgeon seemed cold and insensative to my parents but I guess this is how it is sometimes. IF cancer I'm guessing its early stages? They told him they can do the whipple surgery if his heart doc approves (which he probably won't) or maintain it but they didn't say anything to him about anything else. I read average life expectancy after diagnoses is 3months to 18months (high end).  He was not told anything.  Sorry being wordy. My soul is torn as many of you can relate. thank you for reading this.

Re: My father's bile duct cancer?

Adam, Welcome! Where to begin. My husband had a Whipple at 73 yrs and is now to be 77 next month. I am so very glad you read up on CC as it is very important to be fore armed and to know as much as you can. Listen to your gut. Its usually right. The Whipple is the largest surgery to the human body. Not life threatening but it is huge. Make sure that the oncologist/surgeon has had experience in dealing with CC. If your dad cannot have surgery I am wondering if cyber knife would work. We swear by it. It is not the regime that chemo or radiation is. Only about 3 sessions and you are done. IF the tumor is 1cn that is perfect for cyber knife. It has to be under 7 cn. Also location of the tumor is a factor. Where is the cancer located? Do not be frightened by statistics as you will see on this site some who were given a month are here after 2 years, every one and almost every case is different. Where are you located? I am so glad you found us as here you will meet the most caring and loving people the world over. If you like you can e mail me, email is under my name on the left. One more thing, we highly recommend second and possibly third opinions from other doctors. And when going to the doctor have a list of questions ready for him to answer. Please keep us posted.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My father's bile duct cancer?

Adam,

Welcome to the site. Your dad's tumor sounds small and hopefully it is the only one they find. Surgery is a big step and if your dad's heart surgeon says no, dont believe there are not other options. The new chemo regimes seem to be pretty well tolerated by many members. I would agree to check Cyberknife as well.

Best of luck.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: My father's bile duct cancer?

Hello Adam.....I also would like to welcome you to our site.  You may have already noticed that the occurrence rate for this cancer can affect almost any age group.  We have amongst us several elderly members. Adam, I don't know which sites you have been reading but, the statistics for this cancer are not current due to the newer treatments available.  It takes many years to collect data and to publish it therefore, I would understand the seriousness of this disease but, I would keep in mind that everyone differs in their progression.  As Lainy has mentioned, other specialists should be contacted.  This is a good time to collect all medical records including, scans, CT's, blood tests, doctor's reports, etc. for 2nd or 3rd opinions.  Have your questions ready when speaking with other physicians.  Now, I don't believe that anyone should be cold and insensitive to your parents...it is not what it is and I hope that this was an isolated incidence.  I am glad that you have found us and please, continue to reach out and stay in touch.
Best wishes coming your way,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: My father's bile duct cancer?

Adam,
My mom was 86 when diagnosed, but she chose not to pursue radiation, full chemo, or surgery. Her oncologist didn't think she would last a year, as she already had had open heart surgery, she was diabetic, had glaucoma and macular degeration, and other health issues. Mom continued her daily prayers, with beads in hand almost every time she laid down. She almost made it 3 years after that! No matter what they say, they do NOT know, so do not give up hope. Enjoy every minute you can. At the age of 82, your Dad should probably be encouraged to make as many of the decisions about his care as he wants to make. Yes, my Mom reached the point where she did not want to see the doctors anymore; she just wanted to stay home and die in peace with her family around. Our mourning is for ourselves. Mom is now free of pain and reunited with Dad, but we miss them tremendously. I am convinced that if it is his time, fighting won't help, and if it is not his time to go, he won't, so the decisions about his care should include his hopes and what he still expects to accomplish. Where the quality of life and the quantity of life are uncertain, the patient needs support for whatever they decide.
It is tough for the children, sometimes not so tough on the patient.
I pray for God's peace for you, your Dad, and the rest of the family.
Louise smile

Re: My father's bile duct cancer?

Welcome Adam,

It was difficult for my mother to recover from surgery, she was a heart patient as well, only 66 years old but she was also still smoking. She survived 8 months from diagnosis but never really got back on her feet after the surgery even though she spent several weeks in a rehab facility. What is your father thinking, has he said he would have the surgery if the heart doc approves?

Where are you located? I think photodynamic therapy (PDT) might also be something to ask about since side effects are minimal and quality of life seems to be optimized.

Patty

Re: My father's bile duct cancer?

Thank you for your thoughtful responses.  My father has mentioned he may not pull through if he gets the operation.  The tumor is located in the main bile duct .  My parents are waiting for doctor to call and make appointment for biopsy. Surgeon is convinced it is cancer. I will research cyberknife. I read about pdt and that it can kill some cancer cells and shrink tumor but I guess you can't keep doing that . Thank you again for your responses.

Re: My father's bile duct cancer?

You have a chance, I believe for cyber knife. As long as the tumor is in the bile duct and not the liver. Must be under 7 cn. They have even come up with a better CKnife since December when Teddy had his. The only aftermath was tiredness. No pain at all. He was given Zofran for nausea but he didn't take it and never got sick.  Please keep us posted.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My father's bile duct cancer?

On Sept. 2 my father had an ercp and a metal stent put in.   a brushing test was inconclusive.   An appointment to discuss situation with the gastro doc who did the ercp is now in October. I'm worried time is being wasted.  shouldn't a biopsy be done immediately to determine if the tumor is definitely cancer? The surgeon says it probably is. Time is ticking and we are waiting for these doctors to make appointments to talk. It could be another few weeks to a month after that just for the biopsy. Am I unduly panicking?  I don't know what to think or do but i feel that now is the time for something while the tumor is small.  I am praying for those on this site and am encouraged by the good news/ whats working section.

Re: My father's bile duct cancer?

Adam...from what I have learned often times brushings come back negative.  In this case, in order to make a diagnoses, Physicians will take in account all other symptoms including, blood tests, CT results, etc.  When in October is the appointment? If it is set for sometime within the next 2 weeks then, I would not be too concerned about the length of time.  Much information is still to be evaluated before a definite decision can be made regarding the treatment options.  Adam, is it possible for you to be present at any of the upcoming visits with the physicians?  This would allow you to ask the questions so much on your mind.  Others may have more information to share with you.
All my best wishes are coming your way,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: My father's bile duct cancer?

Adam, I would be nervous too if they set the appointment a month from when the test was done! In one week Teddy had an MRI, CT Scan and  ERCP and the next week he had the Whipple. Have you asked this doctor how many CC patients he has treated? I have learned one thing if nothing else, and that is we have to be aggressive with these medical people. Teddy had a PET Scan Tuesday and I have been calling daily for the results. Should have them today.
When I called yesterday found out they got them back but they had not been entered into the system!!! I agree with Marion, if your appointment is the beginning of October I would just leave it now but if its another month away I would get on the phone! Please keep us informed of your progress.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

12 (edited by Adam Mon, 05 Oct 2009 18:24:24)

Re: My father's bile duct cancer?

Hello - We met with gastro today. They have to take out the big metal stent they just put in to get a biopsy with a "baby scope" that goes into the bile duct and give him a new metal stent.  Makes me angry they didn't do it first time. They only did brushings.  I asked about the things I read about like ca19-9 tumor markers and he said they are only about 50% accurate and medicare won't pay for it. I asked about cyberknife and he said the results are the same as other radiotherapy but with less side effects  My father feels very good at the moment which makes it even more deceiving. He is aware that he would most likely not pull through the whipple surgery as 2 of his 3 main arteries to heart  are 100% blocked.  The tumor is less than 1cm but may be connected to pancreas but he said they can't tell. Gastro also mentioned bile duct bypass surgery but this seems for comfort and less stent replacement visits.  Every day with my dad is a gift. He had a grandmother with cancer who was given 6 months to live and lived 10 years to come back to the doomsday doctors to their surprise.  He believes this will happen to him.  I keep reading how fast this cancer grows. Thank you for your support.  I am praying and hoping for those on this website. God Bless you

Re: My father's bile duct cancer?

Adam....Often, I wonder,  why the bypass surgery (Roux-en-Y Procedure)
is not performed more often.  It has proven to give relief to the patient and yet, I find it often not implemented.  I am with you.  May your Dad prove (as your grandma had) that predictions don't always come true.  Good luck.
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: My father's bile duct cancer?

Hi Adam,
I can feel your frustration. I would be upset if they had to re-do the stent for the biopsy also. What's interesting is that a CA 19-9 over 100 is generally a pretty good indicator of cancer, esp. if it is in the thousands.  It's the brushings that are only 25% effective. And if they send the brushings out for FISH staining the percentage comes up closer to 50% Medicare paid for all of my mother's testing, so is CT medicare different than NJ? Not sure.
Please ask again about the CA 19-9 - as it is just a simple blood test, and much less expensive than an ERCP and biopsy/brushing.
Maybe your dad could use a second opinion? I see you are in NJ.. are you near Sloan or Mt. Sinai? Maybe a treatment like microspheres would work?

I hope you get some solid answers soon.
Keep us posted.
Ashley

Re: My father's bile duct cancer?

Hello, I have been off this site a while. My father's unseen tumor is now about 3 cm. They found it last week when inserting metal b-duct stent. We are told it's incurable. He has petscan apt. next Thursday and we will try to get him into sloan k asap. I heard they are caring there. Bypass surgery has been mentioned. He also has a lump on his leg that makes me fearful this has spread. He is so loving, caring , funny and great. You would love him if you met him. Sorry to be so wordy.

Re: My father's bile duct cancer?

Dear Adam, I am so very sorry to hear about your father. Did they say why it in incurable at 3 CM?  I hope you get him in to SK.  Please let us know.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My father's bile duct cancer?

I think incurable because of his health. Diabetes, 2 of 3 arteries fully blocked and other things. Only thing is whipple which would probably be too much as he is 84 also. We shall see what petscan shows.

Re: My father's bile duct cancer?

Adam, I agree with you about the Whipple at 84. It is the biggest surgery to the human body, not life threatening but huge. The recovery is usually a few months. It will be good to hear what SK has to say. Hang in, be strong!
P.S. Did they happen to mention Cyber Knife? It is non invasive and the tumor has to be under 7cm which it is. My husband had CK a few years ago.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My father's bile duct cancer?

Hello new to the site
my grandmother has bile duct cancer. she is 90yrs! so far she has gotten the stent put in. itching has stop. she still looks very yellow and is not eating

*Marions
did you mom have lost a appitit?

Re: My father's bile duct cancer?

Hello mammaluv...and welcome to our site.  The loss of appetite is quite common with this disease.  Does your grandma have problems digesting food?  Supplemental nutrition such as Boost may be helpful.  Enzymes for aiding digestion and small, protein rich food have been suggested by others.  Please, share more with us. The combined knowledge and experience of the members on this site is unsurpassed.  And, everyone will gladly help you along.
All my best wishes,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: My father's bile duct cancer?

Hello,
We finally went to Sloan.  RWJ said he needed bypass surgery no matter what but we found out from Dr. Oreily about a test that shows much more than a pet scan. At RWJ it felt like we were bothering everyone and they were cold. Sloan is better. Test includes dye I think but I can't remember the name of it. He'll go next week. If it shows cancer spread to important blood vessels then whipple is out for sure. He probably will not have this even if possible. They told him it was probably cancer 2 years ago. Nothing showed for all this time but last stent change a 3.5CM tumor. My dad is acting differently and it is a little tough.  I am trying to be strong as you all appear to be.

Re: My father's bile duct cancer?

Adam...are you talking about a scan with contrast? 
Also, this is a silent growing cancer until symptoms appears.  Therefore, your Dad's cancer surfaced at a later stage.  Adam, this often times is the case in fact, I believe it is this way for the majority of patients.  There are no early detection methods in place for this disease. 
This diagnosis comes to a shock to most and I would assume that your Dad is trying to handle it as best he can.  This may explain his appearing to be tough.  Hang in there, Adam.  Much information is yet to come your way.  And please, stay in touch.  Also, ranting and raving is just fine with us.  This is the place to do just that.  Just know that we care.
All my best wishes,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: My father's bile duct cancer?

yes scan with contrast. Surgeon says its stage 1 or 2. suggests chemo and says no rush. Says not candidate for whipple now. this makes no sense to me. No word on cyberknife either. A consultation with Dr. Oreily will hopefully answer more questions. God Bless.

Re: My father's bile duct cancer?

Hi Adam, you answered my question as I was just going to ask again about Cyber Knife. The tumor must be under 7cm which it is, so I am wondering why they have not mentioned it. It would also be one of the easiest things for Dad to go through. I am so glad you are all happy at SK as that makes a big difference in attitudes. Good luck and I know you will keep us posted.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My father's bile duct cancer?

Adam...some facilities use Stereotactic Linear Accelerator with Image Guided Radiotherapy or the Gamma knife.  Had anyone suggested a visit with a radiology oncologist?
Good luck with the upcoming appointment and the awaited clarification of the findings at Sloan.  Please, keep us posted.
All my best wishes,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER