Topic: What are your real thoughts on CTCA

With as many members as there are on this board, I'm surprised so few people have gone to CTCA. I'm one who did. In fact, CarynRose is a friend of mine that I met there (in the Philla, Pa. branch). My experience there was generally excellent. Caryn and I had the same oncologist there, and I think, as far as mainstream oncologists go, he is very nearly a GOD. I liked the alternative services offered there, too. I liked having all my tests and treatments under one roof, by different doctors who all knew each other. The entire place is as close to a resort as any cancer facility could be; the food is free for the patients and one caregiver and it is VERY good. The atmosphere is incredibly supportive and comforting, very patient-centered. True, you have to have good insurance to go there, but cancer is VERY big business. What facility can you go to without good insurance or a LOT of money? I looked into a lot of alternative treatment centers, and I would have had to pay out of pocket for all of them. At least at CTCA, the supportive services (naturopathy, acupuncture, nutrition, physical therapy, reikii massage, counseling, etc.) are all free of charge. They even provide field trips, group meetings, games, movies, transportation for errands, etc. and every patient is treated with the utmost respect and loving care. My experience there was very positive.

Hugggs! Maddy Mason, Hudson Valley, NY

I too went to CTCA. I went to the one in Tulsa. Absolutely wonderful, everything that Maddy said. But you do have to have the insurance, but the different facilities take different insurances. I live in AZ and they just built one here, they will not take me w/o a $250,000.00 retainer. I am no longer going to CTCA, as I am done with treatment now and just being watched. So I found an Onc here to go to. I believe you get the same treatments for cancer at CTCA as anywhere else, its all the other things they do that make the difference and they take care of everything for you. There is no waiting for test results, usually you get them the next day, the food in the cafeteria is all natural and organic. You are just treated like a queen!

The experience I had there was was mixed.

It is very true that the entire staff treats patients and their caregivers wonderfully - they do roll out the red carpet.  The food is wonderful, the complementary medicine part is an awesome feature. They were much more thorough than my local center as far as testing/scans. 

BUT - 

I found the actual medical care was pretty standard protocol - if you are looking for state of the art or something "different", I did not find that there.

The worst part of the whole experience - although they took my "out of network" insurance, they were EXTREMELY deceptive about what my out of pocket costs would be. Of course, I never got the first bill until well into treatment and yeeouch! The numbers they  quoted at the beginning were completely bogus. After the fact, when you approach them, they pull out all kinds of policies, excuses etc.    Horrible. I have seen others on the internet complaining about this "financial counseling" scam that they do on your first day.  

PANTS ON FIRE! 

I am in Michigan and have had bad experiences with 3 different facilities here.  Granted 2 were small town hospitals that were satellites of the bigger Sparrow Hospital in Lansing and Lacks Cancer Center in Grand Rapids, and then Spectram Health of Grand Rapids.  There were so many things that were done wrong, missed, reports never given to me in timely fashion.  And the last straw when I ended up in Butterworth Hospital in terrible shape and no one could figure out what was wrong with me.  I had sky high blood pressure, nausea, horrible headache.  What I got was a drug-induced seizure and an MRI that showed I didn't have brain mets.  Any finally was sent home with another blood pressure med to try and keep my blood pressure under control.

 Since that visit, I had PET/CT scan that showed my bone mets were active all over the place and many liver mets in both lobes; previously I had never had liver mets.  That last hospital stay was the straw that broke the camel's back.  I've slipped into a serious depression and moved my treatment to one of he top cancer centers in the country, University of Michigan Cancer Center.

I've been there for 3 treatments now and I am amazed at the competency and how comprehensive they are.  My cancer seems to under control for now, but the depression has gotten very serious and locally I'm not getting the help I need.  I saw a therapist yesterday and she told me that honestly if I were her sister she would tell me to get my mental health care also at U of M where they are trained to treat and council patients dealing with my special needs.   My husband called today and they are setting me up immediately with help. 

I can't believe what more than 3 1/2 years of the trauma, mistakes and incompetence of the medical communities I've had to deal with.  I was only a couple of days out of the hospital back in July and that morning I felt the light and hope go out of me.  I'm no longer living...I'm just existing.

I haven't always felt this way since my diagnosis.  I used to have hope, I used to laugh, I used to enjoy my family but now I have none of that.  I don't even know if they can help me at U of M.

But knowing what I know now, I would NEVER go anywhere except one of the 10 top rated cancer centers in the country.  I checked out CTC and BCBS would cover all but 20%, afraid we could never pay that much out of pocket.

Lydia is in Michigan, and I so hope she calls U of M for help.

Carla

Goldie, $16,000 seems extremely high for treatment, especially early stage.  My oncologist was not in my plan but still my out of pocket for 8 rounds of chemo (plus the neulasta, the big ticket item) was less than $2000.  All of my other docs were in my plan.  Are they pocketing the entire $250,000 retainer and then charging you that?  Cause that is MUCH more than my treatment cost my insurance company.

 When I read about the TLC everyone got from this CTCA I can't help but think it should be like that everywhere.  I mean, if you have cancer shouldn't you get delicious, healthy food and kind, knowledgeable nurses and a massage now and then?  Yeah, I know, dream on . . .

 I will say that when my niece was treated at St Judes  in Memphis for brain cancer she and her family received an unbelievable assortment o supportive services.  The kicker was that everything was free, including lodging and airfare back for checkups -- all paid for by teh incredible fundraising that they do.  Plus its the best medical care in the world for children with cancer.  If only there was a facility like that for adults.

Carla

I totally agree with you about the University of Michigan.   I get my chemo treatments from University of Toledo and my oncolgost is the head of the cancer center there.  I love her dearly.  However, I was not able to get my radiation therapy in Toledo.  They did not believe radiation was worth the risk for me since I am stage IV.  My oncolgosit sent me to U of M for my radiation and it was just excellent.    I breezed through radiation and now I continue to go up there for mammograms and some occupational therapy.   If I should have progression again, I will definatley consider switching to U of M for everything.

Jennifer

After the bad experience with the onc at CTCA, Zion, I was suspicous of all oncs.  But I have found a wonderful place where docs and nurses care about their patients - UPMC, Pittsburgh!  I live in IL, but my dh and I have traveled 5 times back to UPMC with a 6th one coming up in Dec 09.  There are no commercials, just a very informative website.  And they ARE in my BCBS network!  So insurance pays for everything after my first $1800 out-of-pocket is fulfilled. (which happened Jan 2 of this year, by the way!)  That is hugh for me!  Kudos to Dr. Geller!

Ruth

I think I will try U of MI first......

Janis, When I started chemo this past January, waited until just after the holidays, doctor said that was OK, my nurse started to hang the chemo bags and I asked her at what weight my dosage was calcualted at.  She checked it and said I was 138, I told her no, I was down to 115 lbs.  She never checked my weight, my temperature, my blood pressure nothing.  This was common throughout my treatments.  The weight was far enough off that the chemo calculations had to be redone.  I can only imagine how ill I might have become had they given me the higher dose.  Nothing was ever double checked.  At U of M everything is checked at least twice.  They have 2 pharmacists verify each patients meds, and in front of me 2 nurses have to check the doses and ask my name and date of birth before I receive any treatment.

My doctor out of G.R. Lack's was never on the same page as the staff.  He would order something scheduled and staff was supposed to call that day and nothing, over and over again.  If I didn't have my scan reports faxed to me directly I wouldn't hear about what was on them for weeks.  When I was in the hospital back in July rather than my doctor telling me he really didn't know what happened and only scheduling a brain MRI, he should have scheduled a PET/CT and not have waited a month or so to do it.

I'm glad for you Janis that your experiences have been better, but if things ever do feel like they're not quite right don't wait as long as I did.  Not only have I suffered significant progression, but now I am going to have to fight my way back from depression and anxiety.  All I think now, is what's the point; I'm going to die anyway; why even try.  

Carla

You are not an idiot!  It's Cancer Treatment Centers of America.  There are several in the US, do a google and you'll find them.

Kindly,

Carla

Carla,

I'm so sorry to hear that you're care was so horrible and inept.  What I have been through isa cake walk compared to your experience, but if it helps at all, you are not alone in feeling such despairing moments. 

I will pray that some hope, light and happiness will find it's way to you very soon. 

We sued my 2 doctors, and the radiologist for negligence.  I was misdiagnosed for more than a year when the breast cancer was plainly there from my first mammogram.  The radiologist even admitted that she screwed up in her deposition.  Because of the delay I wasn't diagnosed until I had extensive bone mets and several vertebra fractures.  We settled out of court because if you know anything about Michigan malpractice laws they are made to favor the insurance companies and the doctors.  If we had not taken a cash settlement and chose to go to trial there would have been a good chance that if a jury ruled in our favor the attornies for the doctors/insurance companies would appeal and keep the whole thing tied up in court for years.  There are also very low caps on what you can get as far any financial damages.  Had our case not been so blatantly negligent we probably would have received nothing and as it was we got enough to pay off some of our debt and some to put away for emergencies.  I have seen in other states cases exactly like mine where the awards have been in the millions.  So much for laws that are supposed to prevent frivalous lawsuits; these laws keep the one's who  actually were hurt from receiving any kind of justice.  And to add insult to injury the doctors who wronged me were never investigated because they kept the financial amount we received below the amount that would have required the doctors be invesitgated and we were required to sign a gag order.  I got life, they continue to live rich in their new homes and  expensive cars.

Carla

Also..when i called them they said i had to have $300,000 to start treatments

I've been to the CTCA in Phila. I like the onco, like the naturopath, but the nurses are a little bit stiff and I always have to fight for them to use my port for a blood draw. My general take on the place is that they have too many patients and not enough staff. A month or so ago I was in contact with them and I got an email that was meant for another staff member, which actually mentioned a patient's name and complained about her. I wrote back and said, hmmm, what are the penalties for violating HIPAA ??? I don't think they're very organized. I am going back next week, just for a second opinion sort of thing, and if I am as frustrated this time as I have been previously, it will be the last time.