Topic: New to site, my brother was recently diagosised

Hi, my name is Patti
My brother was diagnosed last week with bile duct cancer, he was sent to Strong Memorial Hospital in Rochester, NY to meet with a team of doctors. They did another ct scan and now are saying spots have shown up on the lung, liver and pancreas which were not there as of last weeks scan.
The transplant docter said there is a POSSIBILITY that they could do resection surgery, but before this can be done they  want him to have another echocardiogram and Petscan to make sure he could withstand the surgery. They have scheduled this for next week.  The doctor stated that if he does do the surgery there is the possiblity he will get in there and find he can't even touch the tumor ON the bile duct.
I have done a lot of research on this cancer in the past week, an am assuming they are talking of the surgical procedure called the Whipple.

Does anyone know anything about Strong Memorial Hospital in Rochester, NY as being one of the more qualified hospitals to treat this disease? Or should he be somwhere else?

I don't know at this time what stage they have listed him in, but believe with his symptons that presented and the test they have done so far it would be at least a stage 3 if not 4. Does anyone know if at  these stages what type of prognosis he may be looking at? Would much appreciate any thing you can tell me to research or to tell him to ask doctors.

Thank you

2 (edited by marions Thu, 26 Jun 2008 12:26:16)

Re: New to site, my brother was recently diagosised

Hello Patti,
So sorry to hear about your brother however, so happy for you to have found us as each one of us has a story to share with you.
Until others have a chance to respond to you it might want to take advantage of this site by perusing

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: New to site, my brother was recently diagosised

Hi Patti,
I'm very sorry to hear about your brother.  My brother, too, has been diagnosed.  You should make sure you are all comfortable with the doctors you see.  My brother was told by a very, very respected doctor at the Cleveland Clinic that there wasn't much hope for him.  We went to University Hospital and had a much different experience.  He had a liver and duct resection and went through 6 weeks of chemo-radiation and has been declared "cancer-free" at this time.  The likelihood of the cancer coming back may be big, but for now things are looking good.  I'm so happy we pursued a second opinion.
Good luck to you; you can find so much information on this site.  I found it to be a Godsend.

Re: New to site, my brother was recently diagosised

PAtti,
How is your brother doing? Have they decided on a treatment path?

Candyz,
I am glad to hear your brother is doing well. I hadnt seen anything from you recently so I was a little worried. Best of Luck.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: New to site, my brother was recently diagosised

Hi Patti:  Glad you found this web site, but so sorry you had to even look!
My husband had a Whipple (you can see everything under Lainy) 3 years ago at the age of 72. It is the largest surgery to the human body. Not life threatening but huge! The doctor had told us that if he gets in and sees the cancer has spread beyond the bile duct valve he would abort the surgery. We were lucky the cancer was contained. IF we had not taken this chance we would have had months with Teddy and instead we have had 3 quality years. It has reappeared where his duodenum used to be and he is starting radiation Tuesday. Again not a life sentence. Everyone seems to battle their CC one war at a time. You might also want to get a second opinion. In the end it seems we all make the right decision. This is a very special group of people here and I am sure you will get some good suggestions. We will be thinking of you so 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: New to site, my brother was recently diagosised

Yes,

Definitely get a second opinion for your brother and peace of mind.  Do as much research as possible.  I am currently dealing with a recurrence for my fiance after a long year and a half and I walk in to the oncologists office with my clips board full of questions and research.  He says "he knows he always has to be on top of his game when I come in"  Make sure they are trying everything and anything possible out there for your brother.  Our oncologist told us that there are lots of treatments for cc popping up everyday due to an increase of YOUNG people being diagnosed over the last couple of years.  It is a matter of someone holding off long enough to find the right combination.   We are trying to find the right combination.  Wish you lots of luck.  Don't get down on all the bad!  It gets very hard to do at times. 

Christina

Re: New to site, my brother was recently diagosised

Hi, Patti.  I imagine you may have already found a good hospital to help treat your brother.  However, in the event that you are still searching, Memorial Sloan Kettering in NY would be a great option.  They see a large number of cholangio cases every year.

My thoughts are with you.  I hate that you had a reason to search us out, but am glad that you found your way here.

30-something caregiver