Topic: Introduction

Hi

A very close friend was diagnosed with cc 3 years ago last July - the tumor was found in her bottom lobe of the liver.  The bottom lobe was removed.  At the time there was no evidence of the cancer having spread and it was determined that no treatment was necessary.  My friend continued to go for liver scans with no issues, until this past October.  While doing the liver scan they caught the bottom part of her lung and found a concern.  After a few weeks of testing it was determined that cc was in both lungs with the largest spot being about the size of a penny.  Surgery is not an option and at this time she is currently going though chemotherapy.  Prior to the scan and through all of this, she has not exibited any outward signs of being sick, as a matter of fact, she had a cold a few weeks prior to the scan and recovered with no issues.  Outside the side effects of the chemo, you wouldn't know she as so ill.

Her last visit with her doctor, she didn't come away very encouraged and a scan of the lungs and abdomin are scheduled for the 21st of this month to determine if the chemo is working.

My question is in preparation that the chemo isn't working - what are her alternatives and is she treating at the correct cancer center?  We live in southeastern Wisconsin and she is currently treating at Froedert Hospital in Milwaukee.  Does anyone have any suggestions on other options if she decides to look at alternatives?

Thanks

Re: Introduction

Hi Ann and welcome to the best little club in the world that no one wishes to join. We were in Milwaukee when my husband was diagnosed with CC in the bile duct valve and we really lucked out with Dr. Lyle Henry at Columbia and St Marys. He performed a Whipple on Teddy and he was an excellent surgeon. I would also suggest Mayo Clinic in Rochester MN. one of the best. I am sure you will hear from quite a few  of our caring members. 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: Introduction

Ann....You are a great advocate for your friend by reaching out and asking questions on her behalf.  Until others have a chance to respond it might be helpful for you to peruse the Cholangiocarcinoma.org  site.  Although, many of our members have been treated by a variety of physicians, a listing is provided naming some of the major cancer centers.  I am a great believer in second or third opinions (or more if so necessary.)   As our Jeff had mentioned, this cancer likes to play

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: Introduction

Your friend might consider University of Wisconsin Hospital in Madison for a second opinion and/ or treatment. They have a very large and well-regarded cancer treatment center. For such a rare and difficult cancer, I don't think a smaller hospital like Froedtert is necessarily the best place (though so much depends on the individual doctor.)

I grew up in Milwaukee, and worked at UW Hospital in the early 80s, in dietary. Part of my job was delivering snacks to patients on the oncology floors! (which is neither here nor there, just an odd note)

Wishing your friend the very best of luck--

Kristin

Peace, hope, and healing to all!

Re: Introduction

I strongly encourage second opinions with this disease because there is no one "right way" that works for all patients.  Either UW-Madison or Mayo Clinic seem like good bets because they see more cc patients.  There must be some Chicago area hospitals that might be more convenient also.

Good luck.

Re: Introduction

Ann,

Welcome, your friend is lucky to have you in her corner.

My mom was treated in the Chicago area but her treatment after surgery was very limited because she never really recovered from the surgery and was just very weak. We were trying to get her in to see some oncologists who specialized in her cancer but she kept having to go back into the hospital, the oncologists we were trying to get in to see are:

http://nmhphysicians.photobooks.com/pro … ialInt=212

http://rush.photobooks.com/directory/pr … id=9318658

http://rush.photobooks.com/directory/pr … id=5511133

Again, I have no experience with these doctors.

Both Rush and Northwestern have comprehensive cancer centers, see:

http://www.rush.edu/rumc/page-1209563827480.html

http://www.cancer.northwestern.edu/Home/Index.cfm

Patty

Re: Introduction

Ann - I was looking into radioembolization treatment (theraspheres) and besides the Mayo clinic in MN, there are only four other places that were using them regularly (mostly for clinical trials). The two near you are:

Illinois Northwestern Memorial Hospital, Robert H Lurie Comprehensive Cancer Center Chicago, Illinois,

Wisconsin Medical College of Wisconsin, Froedtert Hospital Milwaukee, Wisconsin,

So maybe you are at a good place for CC.

FYI - The others were Johns Hopkins in MD and a hospital in Albany, NY

Re: Introduction

jur777, thanks for reminding me, I meant to also post this hopeful link about microspheres:

http://www.nmh.org/nmh/mediarelations/m … m?cid=3115

Patty

Re: Introduction

Newly  diagnosed  late  November... currently  going  thru  Radiation  &  Chemo  w/ hopes  of  shrinking  the  tumor  to  make  it  operable,  but  very scared  that  this  may  not  become  a  reality...

Re: Introduction

Hi Jim and welcome to the best little club in the world that no one wishes to join. Yes, it is very scary but you have come to the right place. On this Board you can ask, search, share, care and vent. You will find the most amazing and courageous people here. Where are you located and what kind of chemo are you going to receive? Please keep us posted, we care.

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.