Topic: Need advice: which major cancer center?

Well, the easy part is over, for me-- I had CAT scans last Friday and they found that my tumors are growing again, after being stable for 18 months. (I was originally diagnosed and had a resection in 2/04, then a local recurrence in 9/06 followed by a failed surgery, had radiation with Xeloda that shrunk the two tumors, and did great with no further treatment since 12/06.)

I don't like my oncologist's attitude at ALL, and am going to find a new one. He is ASSUMING there's nothing that can help me, and his plan is to give me gemcitabine continuously until it stops working, and then discontinue all treatment. Never mind that I'm relatively young (50), my cancer has been very slow-growing, and I'm otherwise comically healthy (the day before the scan, I took part in a cardio fitness study at the local college, and scored in the top 1% for women my age.)

I live in Kentucky (not really a center for cutting-edge medicine...) and want to go for a consultation at one of the major cancer centers, and then try to find an oncologist here to do what they recommend. I know my case is a little unusual, it progressing so slowly, and I really hope specialists will have better ideas to treat me. My question is, can anyone here recommend a good place to go in the eastern US? Mayo, MD Anderson, Johns Hopkins, somewhere else? I asked my oncologist and he was useless-- couldn't even tell me where to go.

I would be so grateful if anyone could give me recommendations or information about good experiences with any of these places.

Thanks! Wishing you all a beautiful day.

Kristin

Peace, hope, and healing to all!

Re: Need advice: which major cancer center?

Kristin,
Johns Hopkins is super! Our oncologist is William Sharfman, our surgeon is Michael Choti. My husband had failed surgery 1 yr. ago somewhere else. Then we went to Hopkins. What a difference! I have a MSN so I am hard to please but I could not be happier.
                                   Anne

Re: Need advice: which major cancer center?

Kristin,

I am in Indianapolis and I went to Indiana University Med Center at IUPUI in Indianapolis.  My oncologist is very familiar with this cancer and where others just shook their head, she immediately said she would take out the tumor.

Now, I am not saying she would say that to you, but she seems to be very competent and is a fantastic person and IU Med is an excellent teaching facility. I had my resection in 01/2007 and...so far, so good!

Your doctor needs to refer you to IU Med.  I assume your primary care physician can do that if you do not want your current oncologist to do it. 

Her name is Mary Maluccio. 

Best of luck!
Sue

Today is a new day. Congratulations, you are already a survivor!

4 (edited by JeffG Tue, 15 Jul 2008 08:12:21)

Re: Need advice: which major cancer center?

Kristen ... I started with resection of liver and gallbladder over nine years ago at Mayo in Rochester, Mn.  They are a great teaching school of medicine in my opinion.  Although my CC returned and mets all over My Oncoligist now in Kansas is at least up with the times and follows other major hospital protocals.  He follows Sloan,kettering memorial and Mayo protocals primarily and he stays in touch with whats new coming out of the NCI.  Excellent surgeons and Oncologist at both.  It's your choice young lady. Don't rule out possible 3-D conformal radiation.  Iv'e had what I consider two treatments on two different locations with positive results.  wish you the best in your decision making. 
Bless Ya!
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: Need advice: which major cancer center?

Kristin, if you can travel south, Chapel Hill, UNC Hospital is great and also Duke.  We went to Chapel Hill for 2nd opinion last year and they did liver resection where Winston-Salem (where we live) said no.  Our oncologist is Dr. Hanna Sanoff.  She is wonderful!  I've heard many good things about Duke Hospital close to Chapel Hill in Durham, NC also.  Hope this helps.  I know you're already thinking this, but what about other chemo regimens or radiation or CyberKnife or Theraspheres.  Charlie's young at 52 also and we keep seeking out different options and treatments.  Gemzar wasn't very successful with Charlie, but a lot of people do good with it.  Keep us updated on what you decide.

Carol

Re: Need advice: which major cancer center?

p.s.  I forgot chemoembolization, radio frequency ablation.  Charlie's had 'em all. 

Carol

Re: Need advice: which major cancer center?

Let me second Carol on Dr. Sanoff. I only met her once but she was LOVELY. She is young and has loads of energy and is up to date.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Need advice: which major cancer center?

Thank you SO much for your kindness and support! After sorting through all your ideas, and talking with a doctor and nurse who are friends of mine, I've started the process of getting an appointment at the Mayo Clinic in Minnesota. They have several researchers there who have published interesting new work on CC, and their website says they treat 100 patients with CC per YEAR! Also, it's a 5-hour drive from my family and friends in Wisconsin, where I grew up.

They're supposed to call me back by the end of the week with an appointment date. I feel better already, knowing that things are in motion. Thanks for all your help.

Many blessings to you all,

Kristin

Peace, hope, and healing to all!

Re: Need advice: which major cancer center?

I bet you feel so much better having made that decision. Best of luck at Mayo.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Need advice: which major cancer center?

JeffG wrote:

Kristen ... I started with resection of liver and gallbladder over nine years ago at Mayo in Rochester, Mn.  They are a great teaching school of medicine in my opinion.  Although my CC returned and mets all over My Oncoligist now in Kansas is at least up with the times and follows other major hospital protocals.  He follows Sloan,kettering memorial and Mayo protocals primarily and he stays in touch with whats new coming out of the NCI.  Excellent surgeons and Oncologist at both.  It's your choice young lady. Don't rule out possible 3-D conformal radiation.  Iv'e had what I consider two treatments on two different locations with positive results.  wish you the best in your decision making. 
Bless Ya!
Jeff G.

Hi Jeff,

Noticed you mentioned KS as your current treatment location. My wife, who has CC, is in KC and she is being treated by Dr Stephen Williamson, Oncologist @ KU Med.. At this stage all he has to offer is palliative in my opinion. It sounds as if you received some more in depth care. Who is your Oncologist and where are you receiving treatment?

Thanks for your help.

Handyman

11 (edited by JeffG Wed, 16 Jul 2008 12:49:59)

Re: Need advice: which major cancer center?

HANDYMAN .... Dr. Nabbout.  I'm going through the Veterans hospital as he is contracted to provided service once a week.  His primary office I believe is at kansas Cancer Center in wichita, up by Via-Christi Hospital.  He also works at remote sites. If you google kansas Oncologist his name and vita should come up. If you have trouble I'll call my nurses at VA and get infor of where he provides services.  He is going to be leaving on three week vacation starting next week.  Another good Oncologist is Dr. Johnson at Kansas Cancer Center. I know he stays quite up to date on current protocals and trials.  Hope this helps.
Jeff G,

Take it to the Limit,One More Time! (Eagles)

Re: Need advice: which major cancer center?

Kristin - Dr. Steve Alberts at Mayo in Rochester is fantastic, and is actively engaged in cholangio research.  Regardless of who you see there, I would stress to that oncologist the approach you wish to take in your treatment, and let them know that you are not keen towards the more conservative treatment your previous oncologist suggested. 

Please check back and let us know how it goes.  All my best to you.

30-something caregiver

Re: Need advice: which major cancer center?

Sara, thanks so much for the recommendation! I haven't heard back from them yet (they said 2-4 days, and today is day 4) so I'm going to call again.

I had a really good weekend, went blackberry picking with a friend and sewed myself some new clothes in really bright colors, and I'm feeling more like myself again.

Thanks to all for your caring and support!

Kristin

Peace, hope, and healing to all!

Re: Need advice: which major cancer center?

Dear Kristin:

I really like the care I am receiving at MD Anderson cancer center in Houston. They are on the cutting edge of all treatments and clinical trials. They are very "fast track" for visitors out of state. Also, they are very comfortable with recommending a treatement plan and then having it implemented by the onco doc of your choice at home.

Good luck to you! I hope you find a doc who you trust, and gives you a good result.

Violarob in Texas

Re: Need advice: which major cancer center?

Kristin - that is unusual for Mayo to take so long.  I would definitely call them back.  Typically they can get you in very quickly.

If you ever decide to come down to Houston to visit with MD Anderson, please let me know.  I can help get you set up with good housing options.

30-something caregiver

Re: Need advice: which major cancer center?

Hello all,

I now have an appointment to see Dr. Alberts at the Mayo Clinic on August 14. Thank you all so much for the info and encouragement you gave me.

It actually doesn't bother me to wait a few weeks-- my CC has been very slow growing, and I try to spend as much time outside of "cancer world" as I possibly can. My current oncologist had already agreed to let me wait until Sept. to start chemo so that I could enjoy the summer. Now we're planning to spend the time until the appt. up at my family's summer cottage in Wisconsin, a place where I have many happy memories.

Many blessings to all of you!

Kristin

Peace, hope, and healing to all!