High Volume Treatment Centers

Hi,

First of all I want to say my heart goes out to everyone on this discussion board, we are just beginning our journey.

My brother in law, 46 years old, has been diagnosed with pancreatic cancer, he also has a place on his liver (undiagnosed) and on his lungs (also undiagnosed).  He is having a PET scan done today.

I understand enough to know that if the cancer has not spread to any of his other organs he is a candidate for the Whipple Procedure.  I keep hearing that we need to get him to a high volume treatment center.  Our thought from the beginning was that we needed to get him to MD Anderson ASAP.

How do we go about locating the treatment centers with the highest volume for complex surgeries and treatmets?

Thank you,

kanntguy

Hello, I am so sorry that your family has to go through this. My father was just diagnosed in Feb.,(stage IV with mets to the liver) and just like you I was trying to find as much info as could. I would definitely recommend that you go to a Cancer Center that specializes in pancreatic cancer. Johns Hopkins and MD Anderson are undoubtedly two of the best! I also know that Dr. Yeo is one of the best surgeons for this type of cancer, and he is at Jefferson Hospital in Philadelphia. I am not sure where you live, but if you are near either of those places I would recommend that you go. They have the best treatments, and a team of doctors who are experienced with the many complications of pancreatic cancer. I do know that once it has spread to the liver, you will most likely not be a candidate for the whipple procedure. They told my father that when there is any liver involvement they go straight to chemo. I hope all goes well with you brother! Please feel free to contact me if you need to know anything else. I will keep your family in my prayers!! ~* Daddy's Girl*~

kanntguy,

Yes, you absolutely need to get to M D Anderson or, since surgery is probably not in the future, Dr. Fine @ Columbia in NYC who is excellent with chemo protocols.  Since you will be restricted to chemo since the pc is probably already in the liver and lungs, Hopkins is not nearly as advanced in chemo as Dr. Fine is since Dr. Fine pioneered the GTX protocol.  He has kept some patients alive for five years who were given a matter of months by their prior docs.  In addition to being a great oncologist, he is also a very compassionate and sensitive man.

You might want to read on the Johns Hopkins Online PC Support Group; there are both patients and caregivers with a lot of knowledge.  It is also a lot more active than this board.

Good luck.

Joan L

Thank you so much!  I appreciate the help, I am gathering the information and passing it along.

It is looking like he will be referred to MD Anderson but I will let them know about the other Dr.

Again, thank you.

Thank you for your reply, and your prayers.

I am so sorry about your father, I will pray for you and your family as well.

Again, thank you, the information you gave me was very helpful.

 

 

On 6/16/2009 kanntguy wrote:

Hi,

First of all I want to say my heart goes out to everyone on this discussion board, we are just beginning our journey.

My brother in law, 46 years old, has been diagnosed with pancreatic cancer, he also has a place on his liver (undiagnosed) and on his lungs (also undiagnosed).  He is having a PET scan done today.

I understand enough to know that if the cancer has not spread to any of his other organs he is a candidate for the Whipple Procedure.  I keep hearing that we need to get him to a high volume treatment center.  Our thought from the beginning was that we needed to get him to MD Anderson ASAP.

How do we go about locating the treatment centers with the highest volume for complex surgeries and treatmets?

Thank you,

kanntguy

Good luck on your journey.  When I was diagnosed with pancreatic cancer in September of 2008.  The local gastroenterologist I was sent to immediately recommended the Medical University of South Carolina.  He said this particular cancer needs to be treated by a center that does a lot or these procedures.  The Whipple surgery is tricky tough surgery and needs a really experienced surgical team.  He immediately got on the phone and made the initial appointments for me.

MUSC is located in Charleston, South Carolina and they are currently running a clinical study on pancreatic cancer.  I was staged at at staged 3.  Chemotherapy was the first recommendation because the tumor was touching a very large vein that runs through the pancreatis.  Three proven cancer drugs were used on a two week cycle for 12 weeks.  This was followed by six weeks of rest.  Then when restaged they found the tumor had shrunk but not as much as they would have liked.  Then six weeks of radiation followed.  I warn you, I found the radiation harder on me than the chemo. 

Two weeks ago I had the Whipple procedure.  It turned out very well.  We are still waiting for some of the reports of samples taken during surgery to be returned from the lab.  This next Monday I return for a checkup and to have staples removed from the incision. 

The only thing of any concern to me is minor.  Where the drains in my abdomen were removed I am still getting drainage.  The doctors say it is all right and will stop soon.  I think they may have removed the drains too soon.

I'm sore and they tell me it will be a long recovery.  The general  opinion seems to be about six months to get strength back. 

I'm so very glad it was found early enough for the surgery  and now I have a chance for a normal life span.

This is the only big center I am personally familiar with and would not hesitate to recommend it.  It is a 700 mile round trip from home and I have lost track of the number of times we have made that trip.  Ideally you may find one a lot closer especially if you live near a large population center.

Best wishes.

Jeanl

What does it take for a hospital to be considered high volume?  How many whipple's is it recommended a doctor perform each year?

Good question.  I don`t know but I do know I would want someone performing it that is very familiar with the procedure.

 

I recently read that a hospital is considered "high volume" if they do 16 or more Whipple's a year.

hi DaddysGirl sorry to hear about your dad I remember when he was fighting prostrate cancer and what you both  went though.  I still use the bi-cabsoda in my cups of tea, but Im allso on holistic alterative treatment and  it seem to have work out very well as I dont have it prostrate cancer mets in  my back and my ribs any more. Im still have my prostrate and Im still  on watch and weiting but my PSA coming down Im just so sad for your dad can they do any more for him all the best Ray