Re: Treatment Centers/Physicians

Good observation and thanks for pointing it out.  The listing of the cancer centers focus on our disease has to be overhauled.  It is an ongoing project and we simply have not had the manpower to work with this.   As we continue to expand, we hope for more volunteers to join in to help us help the Cholangiocarcinoma patient community.
Hugs,
Marion

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: Treatment Centers/Physicians

no worries, i wondered if it had anything to do with hospitals that maybe
"specialize" in the kind of cancer more--

If I had any kind of computer skills I would help--or if it's something simple, I could try....

let me know! smile

Re: Treatment Centers/Physicians

How sweet of you to offer your help, thebompie, but you have so much going on at the moment and our first concern is for you to navigate the present situation.
Whenever you are ready and have the time to spare, this is the place to connect with our volunteer service coordinator:
http://www.cholangiocarcinoma.org/volunteer.htm

Physically you are right there - our headquarters is located in Salt Lake City.

Hugs,
Marion

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: Treatment Centers/Physicians

My mom had her whipple surgery at the University of Alberta hospital in Edmonton, Alberta Canada

Her surgeon is Dr. Norman Kneteman

Re: Treatment Centers/Physicians

Thanks much.
Hugs,
Marion

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: Treatment Centers/Physicians

My husband and I are snowbirds... live in ND in the summer months and Phoenix in the winter months.  We will be leaving for AZ in about 5 weeks and my husband, who was recently diagnosed with CC, will need to find a new Dr. in the Phoenix area.  Our first thought was to go to Banner MD Anderson in Gilbert, AZ but our current Dr. says that it is not anything like the MD Anderson in Houston and is basically like any other hospital - just that the Dr.s in Gilbert train in Houston and consult with the Houston Drs.  We are leaning towards going to Dr. Choi who works at the AZ Center for Cancer Care in Glendale, AZ.  Have you heard of Dr. Choi or this facility?  What are your thoughts on MD Anderson in Gilbert now that it's been open for 2 years.  Our Dr. also says that the Mayo Clinic in Scottsdale is not as good as the Mayo Clinic in Rochester.  Any thoughts?


Lainy wrote:

Teddy Sardina is being treated by:     Dr. Jack Cavalcant  Oncologist
                                                            Banner Desert Hospital Phoenix
                                                            Dr. John Kresl         Radiologist
                                                            Banner Good Samaritan Hospital Phoenix  I want to add that Mayo Clinic in Phoenix has been doing a lot of liver transplants and MD Anderson is opening here the end of September 2011.

Re: Treatment Centers/Physicians

Dear Snowbird, welcome to Phoenix and our fabulous CC Board but sorry you had to join us. This is so unbelievable as I went to bed, and just got up as I couldn't sleep and there you were! Your Doctor is absolutely right. MDA here is really Banner MDA and they actually bought the name but that is about it. I went there for this last year and they are truly in it for the money. It is NOT like MDA Houston. Mayo Clinic here is good but the one in Rochester is best.  Dr. Cavalcant was the best but unfortunately he retired right after Teddy passed. We had both used him. There is a Dr. Lawrence Koep downtown Phoenix and his partner Dr. James Cashman and both are fabulous if your husband qualifies for liver surgery or transplant. I believe they use St. Joseph downtown and that is a good hospital too. You can Google them both. Not only great Doctors but wonderful bedside personalities. In fact we have another member who used Dr. Koep and loved him. I am now using a young ONC, Michelle Lau and I don't know how many CC she was taken care of but she did mention she is taking care of one now.
I have not heard of Dr. Choi and I would rather be at a big hospital then a Cancer Center. I just looked this Center up and it did not list Dr. Choi nor Cholangio.
What is your husband's diagnosis. Has he had any treatment yet? Don't be afraid as we have some excellent DOCs here. We just really believe CC patients belong in a larger hospital.
Where do you live out here? I would be happy to meet you when you come down. Any questions feel totally free to post or email me at any time, I am here for you!

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: Treatment Centers/Physicians

Thanks for all the info, Lainy.  From what I could find on the internet, Dr. Choi seemed to be the best fit for Ron, for our area of the valley.  Dr. Choi practices at 2 locations - one in Glendale and one in Avondale.  He also has patients at Banner Boswell in Glendale.  He specializes in Hepatic cancer.  So you don't think a cancer center is a good place to go? 

Ron's diagnosis is Adenocarcinoma.  Primary CC with meta to the liver.  He has had 2 chemo treatments of Gem/Cis and has done very well.  We were told that the large tumor shrunk quite a bit after the 1st treatment and isn't as "spongy".  Last week was an off week.  This week he sees his ONC and has another treatment.

Re: Treatment Centers/Physicians

Snowbird the problem is that the larger Hospitals have more experience with CC and sometimes more of the needed equipment. Personally I would want to go to the best not the one closest to me. I am in the Banner system as well and they are pretty big out here. But again there are large Banners and smaller Banners and I would want to be with a larger one. One example is that we have had no patients at Cancer Centers of America and if they went there they left to go to larger Hospitals. All we can do is advise on what is asked but in the end it is still your decision.

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.

185 (edited by Snowbird Mon, 23 Sep 2013 18:01:18)

Re: Treatment Centers/Physicians

Lainy - Do you know if the Banner Boswell Hospital is a larger hospital?  The medical community in AZ is so different from how it is in ND.  I didn't know you could make an appt. with a Dr. at a hospital.  Here we can only make appts. at clinics.  We do not have "Urgent Care" facilities here either. 

When you say that you "looked up" this cancer center and Dr. Choi, do you mean that you have some type of list with doctors and centers that work with CC?

Re: Treatment Centers/Physicians

Hi Snowbird, sorry if I misled you by omission. I Googled Dr. Choi and also the name of his Clinic. OK, so I just Googled Boswell and the only complaint was that someone was there 3 days and never got bathed! This is the point I am trying to make. It can be rated the best in the USA BUT if not well experienced with CC I would not go there. Most people who have CC find out very quickly that they need to be at the best for CC. Actually I use Banner Desert in Mesa and Teddy spent his whole time there for his CC. CC is still a crazy, very rare monster and you want to make sure that your Hubby is at the best treatment place for CC. The 2 ONCs that I recommended both go to St. Joseph downtown. It is big and they are well known and fabulous Doctors/Surgeons. Actually Dr. Cashman used to be head of Liver Transplants at St. Joseph and did about 500 a year. They come here from all over to use him. Another member on our site used Dr.Koep and Bob is in his 14th or 15th year of survival. Google St Josephs and Banner Desert. I have AARP Medicare United Healthcare and I know Banner takes that. Not sure about St.Joseph Insurance or the others Banner takes. I would imagine they take about everything. I know this is a tough decision please just keep in mind that you want and must be where CC is experienced more often. Oh, Teddy had Cigna and had his PET Scans and his CYber Knife at St. Joseph so they take Cigna too. I try to always be a little light so I want you to know St. J and Banner Desert have wonderful Cafeterias and Gift Shops! Questions, ask away, that's why I am here. BTW it is starting to cool down a little, in the 90's. Beautiful

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: Treatment Centers/Physicians

Our surgeon was Dr Myron Schwartz at Mount Sinai Medical Center, NY
He is amazing. He did an outstanding surgery on my father n law.

Oncologist 1st round with Andrew Jennis at Hackensck in North Jerset

Met today with some guru Dr Steven Schreibman at Morristown Medical Center. He's been in the field a long time and we are very exited to work with him. He is going to doIN-VITRO DIAGNOSTIC TO GUIDE CHEMOTHERAPY SELECTION For solid tumors. This is or treatment of my Farther n laws recurrence

Re: Treatment Centers/Physicians

Hi all,

thought to revive this important thread again.  It is established by members like you and is for the benefit of all.

Thanks and hugs,
Marion

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: Treatment Centers/Physicians

Just saw this and thought I would add my history.

I live in northeast Ohio and am being treated at the Seidman Cancer Center in Mentor, Ohio.  It is a joint venture of the Lake Hospital System (local) and the University Hospitals of Cleveland, Ohio.

Their experience is limited.  I was told (finally) that they have treated four patients in the last three years.  They seem to follow standard protocols but lack experience and imagination, especially as things continue to degrade.  Do not confuse effort and empathy with knowledge and results.

On the good side, I saw Dr. Steven Alberts at the Mayo Clinic in Rochester, Mn for a consult on treatment.  I was impressed by him but it is not practical to see him as my oncologist.

The main reason for this post was to bring it up into the "queue" so that others could contribute current information.

Duke

Fighting with dignity, not desperation.
Live, Laugh, Love - One Day at a Time.
The past has passed.   "Second star to the right and straight on 'til morning."  JM Barrie

Re: Treatment Centers/Physicians

My surgical oncologist was Dr. Kaye Reid Lombardo at the Mayo Clinic in Rochester, MN.
My medical oncologist is Dr. Domingo Musabay at the Mayo Clinic in Rochester, MN.

JulieT

"Just for today, I can get through anything."  Hey....I'm a cancer survivor, not a doctor.  The opinions I state are my own, based on my personal experiences or knowledge.  As always, talk to your doctor about your concerns and treatment.

Re: Treatment Centers/Physicians

Mom is being treated at University of Maryland Greenebaum Cancer Center.

ONC- Dr. Horiba (who is leaving end of January)
Surgeon who attempted resection was Dr. Hanna
Interventional Radiologist (2 SIRT treatments)- Dr. Moeslein

Although I do not think they see the numbers of CC patients that some other centers may, they do have the inter-disciplinary tumor boards.  We have been very happy with Dr. Moeslein.  The ONC taking over has written on genetic mutations being important in treatment of Esoph. cancer, so I'm optomistic that when we meet her, she'll be willing to send Mom's tumor for the genetic mapping (we were assured they still have it from the biopsy).

Re: Treatment Centers/Physicians

I went to the Mayo Clinic in Rochester, MN for testing and in hope of having a liver transplant for my perihilar CC in Dec 2013. I saw Dr. Greg Gores and his fellow Dr. Sumera Rizvi. I was luck enough to be able to have a resection instead of a transplant. My surgeon at Mayo was Dr. David Nagourney. I choose not to pursue adjuvant chemotherapy because I wasn't convinced the benefits outweighed the risks so I have no oncologist. I continue to travel from VA to MN regularly for "surveillance".

Re: Treatment Centers/Physicians

Thanks so very much, dear Matt.
Hugs,
Marion

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: Treatment Centers/Physicians

I have had 2 successful liver resections:

1.  Prof. Jake Krige (Surgical gastroenterology & hepatology)
Professor of surgery at University of Cape Town
operates at Grootte Schuur hospital, Cape Town
SOUTH AFRICA

2.  Dr. Kellee Slater
Brisbane Liver & Gallbladder surgery
Queensland hepatobilliary
Brisbane, Qld
AUSTRALIA

Re: Treatment Centers/Physicians

Many thanks for that Anna-Marie, I know that this info will be important to those in your part of the world.

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Treatment Centers/Physicians

My surgeon that just did my liver resection was Dr Charles Pilgrim, at Frankston hospital, Victoria, Australia

Re: Treatment Centers/Physicians

Thanks much, Moose. 
Hugs,
Marion

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: Treatment Centers/Physicians

Thanks for that Mary, I know it will be of use to others.

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.