Help In Sf Bay Area For Bile Duct Cancer For My Mom

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 the portal vein noted by sonographic evidence suggestive of invasion of the vein, which is why they are saying that surgery is not an option.

Has anyone else been told this? What treatments did you try?

Her Kaiser MD in Santa Rosa says he's seen just 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

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 the portal vein noted by sonographic evidence suggestive of invasion of the vein, which is why they are saying that surgery is not an option.

Has anyone else been told this? What treatments did you try?

Her Kaiser MD in Santa Rosa says he's seen just 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

 

Carolyn,

You took the time to ask for assistance. You requested information on the 8th of May...Iris responded on the 9th of May...I responded on the 12th of May...but as of this moment Carolyn hasn't taken the time to acknowledge these responses.

Actions speak loader then words...if you are serious about your inquiries, then follow through with your posting question on the 8th of May and review the responses that I believe answer your questions.

Your mother is dealing with a very serious cancer that kills...delays will only put her in a more dangerous situation...most people do not live to enjoy many bithdays after being diagnosed with bile duct cancer.

Bedside manners I do not have...the only thing I can offer is hopefully some sound advise.  You received some strong solid information from Iris and I believe I passed on some good advise also...don't waste time, the life you save may be your mothers...

Good luck and God bless your mother.....Leonard 

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 the portal vein noted by sonographic evidence suggestive of invasion of the vein, which is why they are saying that surgery is not an option.

Has anyone else been told this? What treatments did you try?

Her Kaiser MD in Santa Rosa says he's seen just 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

 

Hi Carolyn,

I too had cholangiocarcinoma( word I never heard before and hope to never hear again) almost two years ago. It was stage 111 and had invaded my liver partially. I get CT scans every four months to make sure there are no recurrences(so far so good) The worst thing next to the cancer is all the dis-information bs that is out there. I had surgery to have the tumor removed.(Drs. Brinks and Cashman did the surgery, highly recommend them, people from all over US come to have surgery done)they removed 99% of the cancer. Then came the fun part, which was interviewing the Oncologists. I had two doom and gloomers who basically told me to go home pack my bags and get ready for a long nap, and then I met the third guy Dr Issacs, matter of factly told me he would use Xeloda(oral chemo, few side -effects and radiation)I chose my own radiation Novalis. I hope you have access to this in the bay area.Whoever that was that said the chemo and radiation doesn't work on this has been listening to the wrong guy, because it certainly worked on me. That and the fact I have been using Rene Caissee tea(you have to order over the internet, I thought it was going to be a bunch of crap till I bought some for my mom with stage 1111 lung cancer, four years ago, sill cancer-free) and I am cancer-free almost two years out.Good luck, the more you read on the internet the more frustrated and depressed you'll get, because all the info is so dated and they are playing off of a small sampling of patients.I hope your mom does welll and you or she can email me anytime I hope this helps.I  am 52 yrs old.Live-strong

Tom

Phoenix, AZ

Thanks Tom....

 Congratulations on your survival of this horrible thing.

I am very frustrated b/c the onc. at Kaiser says if the PET scan shows there is an infected lymph node in her pancreaus (he sees a swollen node on a CT scan already), then she is not a candidate for surgery, being she is a stage 3 already. There is a local lymph node near the bile duct and a 3.5 cm mass near the portal vein, with possible encasement or invasion.

 How long was your surgery?  How large was the mass and where was it located?

 We are seeing a surgeon at UCSF who will give us the opinion on surgery next week.  The PET scan is Monday, but we won't have the results for 2-3 days.

 Any further helpful info would be great. My mom is feeling very good now, I am trying to be positvie with her then feeling like hopeless when I am alone sometimes.

With appreciation,

Carolyn