On 5/9/2008
Flower1 wrote:
On 5/8/2008
excelpro wrote:
Hi,
My 78 yr mom was diagnosed last Friday and 3 stints were put in by CA Pac Med Ctr Tues. She has one known malignant lymph node near the liver, cancer in the bile duct, a 3.5 cm mass in the liver near that vein (i can't recall the name(.
Her Kaiser MD in Santa Rosa says he's seen a handful of cases (he looks young)
Does anyone have info/resources about a UCSF or other local oncologist with more case experience here in N CA with bile duct ?
She is feeling good, eating well, not in pain but had 16 Bilirubin/Jaundice Friday which is why they did the CAT scan and the stints. Her bilirubin is going down well now since the stints BTW CA Pacific Med Ctr in SF was awesome!
They want to do chemo but I am unsure which approach would be best. I see that surgery can be used to cut out the bile duct and tumor. I want to get a second opinion about this option, esp how risky surgery is, and why could they not just cut out the bad lymph node, tumor and bile duct and see if any other areas have cancer (CAT scan of upper torso was clear; they say they can do a PET scan to check other lymph nodes; I thought there was a blood test that checked tumor levels....still learning/grasping).
She has no other health issues, walks and eats well.
Any advice appreciated re: Kaiser system in N CA or nearby and/or UC resources in N CA or S CA.
God bless you all,
Carolyn
Hello Carolyn,
Sorry to hear about your mom. You need to understand that this is a very serious illness. Chemo or radiation are absolute no options for this type of cancer. On the contrary, most of the patiens are starting to feel a lot worse, sick and stop eating.
When the liver is not too badly infected, surgery is a possibility. But that is not such an easy thing as you might think. It's not simply "remove the bile ducts and lymfe notes". The bile ducts are attached to and go over the liver, surgery means that also part of the liver must be removed. When the liver is too much infected, like with my husband, surgery is not possible.
My husband (62) was diagnosed with this cancer last year and in spite of the life-prediction of 2-3 months, he is still doing very well today (a whole year later). That is because his defence system is very good and he is working on it to keep it good. He is eating well, and he does a lot of sport. He also still works and goes to his work on his bike, which is 10 kilometres from where we live. Doctors here in Holland are astonished about how he is still active and has no weight- or energy-loss. They stretch that must have to do with him being to positive and working on his defence system (antibodies are very high in his blood).
I hope you can get the best treatment for your mom. Look at this bile duct site and you will find a lot of help and good suggestions. Will you keep me informed about how you are coping? Very often this is for the caregivers really as hard as for the patient and than it is good to get things "off your chest".
Wishing you and your family all the best,
Iris (the Netherlands).
Dear Iris,
Thank you for your reply. I did not get the "notify" email in my inbox, so please excuse the delay. I have been checking email everyday since this post, and for some reason, your message did not come through. Thankfully Leonard figured out I had not replied and sent me a note to say you had.
We have an appt with a surgeon for May 22 who is expert in this type of surgery in SF. I appreciate your encouraging words and amazing outcome so far for your husband. My mom is unsure about chemo, as am I, which is why we are seeing a surgeon first. She is eating well, feeling well, and seems very healthy now that the stents are working to drain the bile duct.
I have also looked into PDT therapy but it requires that you travel to Virginia, far from California and it is not a cure, but a palantive measure.
God bless you and your husband and thank you for sharing your story.
Regards,
Carolyn