Topic: Cancer Treatment Center or University Hospital?

My husband was diagnosed with CC in Dec/Jan.  He has been through the traditional chemo of Cisplatin and Gemzar.  He is "not a candidate for surgery".  Due to permanent hearing loss, he was taken off the Cisplatin back in May or early June.  Since then, the stomach pain has returned (it had gone away completely in late February), his tumor has become more dense, and his tumor markers sky rocketed!  He now is on Carboplatin with the Gemzar, but Carboplatin is an "older" chemo drug and isn't recommended anymore since Cisplatin is proven to be much more effective.  We are now looking for other alternatives since his doctor seems to be unsure as to what to do at this point.  We are considering both Emory and Cancer Treatment Centers of America.  Our Oncologist discourged us from CTCA since it is not a university-based hospital.  Both have their pros and cons from what I see.  We live in Georgia and there is a new CTCA opening here in about 2 weeks, but we also have Emory in Atlanta available to us.  Any suggestions or experiences you can share?

Re: Cancer Treatment Center or University Hospital?

Dear srengle, I am sorry to read about your latest reports. Definitely a Hospital vs CTCA. I think we have 1 person who has been to CTCA others have tried and left. You will want to make sure that the Hospital has treated quite a few CC patients and the ONC as well. As for suggestions in your area, I am not that familiar but I just know you will get some good advise here. On our home page is also a listing of Hospitals or go to our search engine and type in Hospitals. Please do keep us posted on your husband as we truly 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.

3 (edited by Pamela Wed, 01 Aug 2012 13:20:07)

Re: Cancer Treatment Center or University Hospital?

Dear srengle,

For some cancers CTCA might be ok, but I think this cancer is too rare. I know they try to get you with their shiny, pretty facilities and gracious hospitality. We had a friend that went there and raved about the doctors and the facility. She developed a bad infection in her blood and never recovered. She sadly passed away a week and a half ago. I just can't stop thinking that if she had gone to a major cancer center that had treated her more aggressively and knew what they were doing from experience with CC, she might still be here today. Just my opinion, but I know I would not take my daughter there. I hope you find the right fit for your husband. Let us know what you decide. Take care.

-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Cancer Treatment Center or University Hospital?

I agree with the others, I would go anywhere else that is recommended and has some knowledge and experience with  CC, but would not recommend CTCA.  This is just my personal opinion based on what I have heard about CTCA from others, not on personal experience.  I have been told by others who have gone there or checked into it, that if you don't have insurance that they accept and don't have enough money to pay your own way, you are not even considered.  To me this sounds like they are more about the money than the treatment of people.  Once again, just my personal opinion.   I'm hoping you find the right fit and the best help for your husband.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Cancer Treatment Center or University Hospital?

I realize this will not be a popular post but the facts for my family with CTCA, Stanford and UC Davis are quite different then I'm reading here.  The "major medical institutions" we first went to could not diagnosis the cancer.  The appointments were weeks out, waiting for test results took days and the left hand did not know what the right hand was doing.  We went to CTCA whom diagnosised the cancer, IMMEDIATELY AND EXTREMELY AGGRESSIVELY began treatment and my son is now walking, driving and enjoying his life again.  Yes they are a for profit hospital, that was founded by a businessman who lost his Mother to cancer and despised the way they were treated.  They are positively not just in it for the money.  They are not a preferred provider on my sons Blue Shield/Blue Cross, they accept what the insurance pays and do not charge us the difference.  They said do not worry about it, I worried, until we received the bills.  True to their word.  I am not worried about it.  They will also pay your deductible if you are not able.  They deal with people in late stage cancers.  Realistically the survival rate will be low, but not from lack of excellent care.  They have researchers closely involved with every institution worldwide.  AND if your insurance will not pay for a drug (chemo) they will absorb the cost if it is necessary to your treatment.  It is not just shine and glitter.  The patient is number one and they have proven that to my family and many more we have met there since June 1, of this year!  Stanford is so over worked, over crowded and understaffed they lose you in the shuffle.  Davis hadn't a clue.  CTCA does not receive the research grants and govt monies the large institutions do but they do accept minimum payments from insurance.  Sorry this was so long but I thought a response from someone who is there and appreciates them should be heard.  This does not mean I am not looking under every rock for a cure for my child, but every rock I lift confirms all I'm being told.

Re: Cancer Treatment Center or University Hospital?

Dear Notdoneyet,

I am thrilled for you and your son that you are getting the care you so deserve. We are all just stating our opinions and every opinion counts. My daughter receives her care at University of Michigan Cancer Center. Not the most popular place to go on this website, but she gets excellent care and we love it there. So, to each his own. For every hospital and cancer center, you will get people that love it and hate it. I am happy you found the place where you and your son feel comfortable, and feel he is being helped. That is all we can ask for. Take care.

-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Cancer Treatment Center or University Hospital?

Notdoneyet....I am glad to hear of your successful story.  Please, know that any personal experience may it be seemingly popular or not, is of value to us all.
I wish for all good things to continue coming your way.
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: Cancer Treatment Center or University Hospital?

SRengle, they are opening up a new CTCA in Newnan GA which is just south of Atlanta ( about 40miles)  I think next week. I have already contacted them about my mother but because she only has medicare they could not see her until December ( which I am being told they will start accepting all Medicare patients. ) It's worth a try for you . Good luck!

Re: Cancer Treatment Center or University Hospital?

I, too have heard things about CTCA. My opinion is that if you want to stay local, you contact your insurance company to see if the facilities accept your insurance, etc. Then go to BOTH and see which one you like best. We encourage 2nd opinions around here, and everyone's experiences are different.
So talk to every facility you can, and compare the oncs, plans of attack, etc. THEN make your decision. But make sure your insurance will cover it. It's expensive enough without having to worry about out of network expenses, too.
CTCA is not a preferred provider under AETNA.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Cancer Treatment Center or University Hospital?

Although my brother Bruce is receiving excellent care from his team of doctors in Pittsburgh, and although he is still with us after more than 3 years in the battle (having been told initially that he only had 4 - 6 months to live), we are going to be exploring CTCA in Philadelphia for options going forward.  Why? Because after all of this time, we do believe that there is still a missing piece of "medical oversight" - which looks at Bruce's body & mind systemically, integratively and holistically.  And because we believe that we must be constantly vigilant and constantly assessing all options.

Here is the information on the integrative approach from their website:  "At Cancer Treatment Centers of America (CTCA), integrative cancer treatment isn’t a buzzword or a recent trend. It’s what we’ve provided to our patients since 1988.
Unlike other hospitals and treatment facilities, at CTCA you will find a comprehensive and integrative approach to fighting cancer—all under one roof. Our integrative cancer treatment expands the boundaries of conventional care by bringing together traditional tools for fighting cancer, such as surgery, radiation,chemotherapy, and immunotherapy, with supportive therapies, including nutritional support, naturopathic medicine, mind-body medicine, oncology rehabilitation, pain management, and spiritual support.

We are committed to treating all of you—not just your disease—using leading-edge medical technology and innovative medical therapies. With our unique approach, we aim to fight your cancer on all fronts, and with every available resource. Your care team members collaborate on your treatment by sharing essential information and collectively determining the best treatment plan for you."

Bruce plans to call them today.  I will let you all know what we discover along the way.

Best wishes, prayers and love to all of you in your own battles and searches for answers.

God bless!

Re: Cancer Treatment Center or University Hospital?

PS -- Bruce is also meeting with his team of doctors in Pittsburgh this week to review options going forward as they see it.  He spent quite a bit of time yesterday talking to his surgeon (Yes, on a Sunday! - Dr. Marsh is an incredible, compassionate and passionate human being...extremely dedicated!).  Bruce has been off of the chemo (gemzar/cisplatin) since July and has had some reoccurrence of tumors in his liver along with some FDG avid areas in his abdomen.  Dr. Marsh is proposing a different approach which we will need to review with Dr. Marks (Bruce's oncologist).  We also have been consulting with Dr. Sun, who is an expert in CC.  We will be holding a very intense family pow-wow once we have all data from the Pittsburgh team and CTCA.

Re: Cancer Treatment Center or University Hospital?

I am so sorry to say that I lost my husband to CC on October 10.  We were told on the 5th that the chemo was not working and that the cancer had grown significantly (following a CT scan on the 4th).  My Steve was alert and talking on the 9th, but was fading quickly.  He was able to talk to the pastor and make arrangements.  He went peacefully the next day with his family at his side.  After a 10 month battle, it is over.  What a devistating disease.  I don't know what we could have done differently outside of a transplant, which the oncologist said was out of the question (although I don't know why).  He will be terribly missed.

Re: Cancer Treatment Center or University Hospital?

srengle,

You and your family have my deepest sympathy on the loss of your husband.  No words can change what happened or make it better, but try to take comfort in knowing he is no longer suffering or in pain.   Keep him forever in your heart and memories.  We are all here for you to help and support you in any way we can. 

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Cancer Treatment Center or University Hospital?

Dear srengle,

I am so sorry to hear of Steve's passing. As Darla said, please take comfort in knowing he is no longer in pain. I know that doesn't stop your sadness and I hope one day you find happiness in the memories you shared. Please let us know how you are doing.

Love, -Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Cancer Treatment Center or University Hospital?

Dear srengle,

You have my deepest sympathy for your loss.  You are right:  this disease is devastating...  Please take comfort in knowing that he went peacefully with your family surrounding him...and know that you have many here on this "board" who share your sorrow.

May God bless you with excellent memories and healing of your heart.

Love,

Patti

Re: Cancer Treatment Center or University Hospital?

I am so sorry to hear about your husband's passing.  I hope your sadness is replaced by your happy memories really soon.

(((Hugs)))
-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Cancer Treatment Center or University Hospital?

Dearest srengle and family, I am deeply sorry about Steve's Passsing, and I know we all feel he is in a more Peaceful place now. It is natural to look back and question, please don't!  There is no right or wrong with CC as we all do the best we can. I promise you in time the "bad" memories will fade and you will remember the best!

Do not stand at my grave and weep;
I am not there. I do not sleep.
I am a thousand winds that blow.
I am the diamond glints on snow.
I am the sunlight on ripened grain.
I am the gentle autumn's rain,
When you awaken in the morning's hush,
I am the swift uplifting rush
Of quiet birds in circled flight.
I am the soft stars that shine at night.
Do not stand at my grave and cry;
I am not there. I did not die.                   By Mary Elizabeth Frye

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: Cancer Treatment Center or University Hospital?

I am so sorry to hear of your husbands passing.raying for your family.
Lisa

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