FYI: CANCER TREATMENT CENTER O F AMERICA-PHILADELPHIA
Dear friends:
So I have done it: I finally gathered my courage and set up a 3-day cancer evaluation visit with the Cancer Treatment Center of America located in Philadelphia, for a complete check-up:
http://www.cancercenter.com/cancer-hospitals.cfm
I call this the "bravest week of my life," as it involved finding out once and for all whether my mainly naturopathic treatment choices for the past 4 years were working out or not. My treatment choices were, of course, influenced by my disastrous chemotherapy in 2006 (when I was put on the TAC chemo by an oncologist who did not provide me with test results showing that my tumor does not benefit from chemo).
Also: like many of us on this part of the forum, I had increasing and disturbing doubts about the safety and efficacy of "little pills for prevention," such as the SERMs, the AIs, and now the PARPs, and other heavy-handed conventional treatments.
I am happy to report, however, that my visit to the CTCA in Philadelphia was a total success. Yes, I was suspicious of the TV commercial for CTCA before leaving. You know..."...They (CTCA) took me by the hand..."They knew me better than I knew myself" But, as it turns out, I was wrong to have doubted, my fears were unfounded: The CTCA is a totally integrative facility with ABSOLUTELY OUTSTANDING customer service.
First of all, my train transportation was arranged AND paid for by the CTCA. On Monday morning, I was met at the train station by the chauffeured stretch limousine sent to wait for me and another patient from the DC area. I am telling you: it was the royal treatment........
After swinging by the airport to pick up another patient and care-taker from Boston, we finally arrived at the CTCA. Everything was ready for me. Reservations had been made for 2 nights at the Radisson Northeast, where I stayed the whole time, at a rate of $45/night. However, CTCA-owned apartments are also available for long-term treatments, and patients are sometimes kept in those nice, comfortable rooms onsite, if they need 24-hour care. I came across many people who spend 2-3-4 days at the center for every chemotherapy infusion. Beats receiving those powerful drugs in some indifferent oncologist's office and then being sent home to fend for yourself, as I am sure you will agree.
Upon arrival at the center, I was handed a complete information package and introduced to my after-care manager: she will be my point of contact from now on, and I can call her office 24-hours a day if necessary for any question I may have (she can even mail me medicine or supplements anywhere in the world by DHL if needed!!!).
Tours of Philadelphia are organized for patients. AND if all that was not enough, I was encouraged to take advantage of sessions with the chiropractor, the acupuncturist, and the homeopath, etc..., throughout my visit!
Delicious organic food is available at the cafeteria, free-of-charge, for patients AND care-takers. After hours, they can still provide healthy snacks/sandwiches/beverages.
As I said before, customer-service is above and beyond: if an employee just sees you looking around, they immediately walk over and ask if there is anything they can do for you. There is nothing but smiles all around. There is also a table with puzzles and other games in the waiting room for the radiology clinic, where I made new friends.
After a comprehensive orientation, I was handed my appointment schedule for the day, and explained how the facility is set up. OK, if I had to do this again, I would call ahead and DISCUSS which tests I feel I need, before getting to the center. This time around, I did not take that precaution, and my CTCA oncologist had requested a CT-bone scan and a Gated Cardiac Wall Motion Study (a form of heart health evaluation to see if the chemotherapeutic agent Adriamycin had damaged the heart), in addition to blood works. I thought I only needed a breast MRI and blood tests. Indeed, the CT-Scan was a nightmare for me, as I was very uncomfortable with the process (which I feel is toxic and painful), and terrified at the thought of what the test might reveal. I also had to drink a tall glassful of Crystal Light (laced with the artificial sugar Aspertame), together with some kind of chemical to make the heart evaluation possible (I did let them know in my evaluation that I don't think Aspertame should be present in a facility like the CTCA).
Though the 24-hour wait for test results was an unforgettable nightmare, everything went well. No evidence of disease anywhere.
But here is the main point: the 2 most important appointments for me were the ones with the nutritionist, and the Naturopathic Doctor (no kidding). Both the nutritionist and ND are held in very high esteem at the CTCA, and considered equal to their oncologist colleagues. Isn't that refreshing?
My consultation with the nutritionist revealed that my nutrition is right on (confirmed by special blood works). She had very few suggestions for me and she commended me for being the first client she met with such a great knowledge of nutritional issues.
My consultation with the ND went just as well. She, too, had very few and minor suggestions for me concerning my supplements intake.
I consider this a validation of our part of the forum, where I have learned so much from all of you over the years......And oh....I was also provided pastoral care (nondenominational), while waiting for test results, when, as you can imagine: I was a basket case.
Please also find attached the address of the website for CTCA vitamins and supplements (open to all, but if you are undergoing treatment with them, you cannot obtain any supplements without their authorization):
However, here's the real "icing on the cake," and believe it or not: my CTCA oncologist decided that I do not need any treatment of any kind. I know this is hard to believe: She actually did not try to convince me to take a SERM, an AI, or a PARP. Furthermore, she stressed the importance of Vitamin D in the prevention of cancer. At that point, I almost could not believe my ears (What? To hear this from a "conventional" oncologist?)................. ..........................................
I am, therefore, convinced that the Cancer Treatment Centers of America are, without the shadow of a doubt, one of the best possible facilities in terms of treatment options available, due to their open-mindedness, their emphasis on/respect for the integrative aspect of the treatment of cancer, which is vital to those of us who believe in treating the WHOLE body and the entire person. I have nothing but praise for the CTCA: this is a FANTASTIC cancer-treatment facility. And thankfully, it is growing (a reflection, I think, of the growing understanding of the need for integrative medicine/new directions in healthcare).
Last but not least: spending 3 days in a cancer-treatment facility is a humbling experience. I have come across many men and women facing Stage IV, and others fast approaching it. This helped me appreciate my own fairy-tale outcome even more, and gave me a measure of how lucky I am to have stumbled upon this Alternative/Complementary website of ours on time. For I am convinced that my "verdict" would NOT have been this outstanding if I had not learned so much from you all, and made the choices that I have been making for the past 4 years.
Please enjoy this holiday season with your loved ones.
Comments
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Yazmin, what an unbelievably inspiring experience you had. CTCA sounds like the place we are ALL looking for! Does insurance cover treatments there?
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In the 90s the FTC ordered CTCA to desist in making unsubstantiated claims about cancer cures in their advertising.
Here's another story about these heroes of cancer treatment:
Failed cancer treatment doubly painful for widow
Jon Yates
What's Your Problem?November 17, 2009
Jose Sanchez was desperate when he visited the Cancer Treatment Centers of America in January.
The 49-year-old Waukegan man, diagnosed with gastric carcinoma, had been given only months to live.
His wife, Fanny Gonzalez, said employees at the Zion facility told the couple it would check with Sanchez's insurance company, Blue Cross and Blue Shield of Illinois, to ensure treatments would be covered.
Days later, Gonzalez said, the couple received a letter from Cancer Treatment Centers of America congratulating them -- Blue Cross had given doctors the green light to begin.
From January through April, Sanchez underwent a series of aggressive treatments.
Gonzalez said her husband initially showed improvement, but it did not last long.
On May 21, he died.
By then, Blue Cross had sent the couple letters denying the initial treatments. The letters continued to arrive after Sanchez's death. In each instance, Blue Cross rejected payments for all treatments using the drug Avastin.
The insurance company said that while Avastin had been approved for other types of cancer, it was considered "experimental, investigational and unproven in all other indications," including treatment of gastric cancer.
Gonzalez appealed Blue Cross's ruling but was denied.
Cancer Treatment Centers of America sent Sanchez's estate the bill: a staggering $161,601.50.
More here:
http://www.chicagotribune.com/health/chi-tue-problem-cancer-1117-nov17,0,7272346.column
Thanks Yazmin, but I think I'll stick with my community hospital. They actually don't spend my healthcare dollars on stretch limos.
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Yazmin ~ What an uplifting experience and story! Thank you so much for sharing it with us! I'm proud of you for going to CTCA and making your own observations and conclusions. Good for you!
As far as Mr. Gonazales' story, if conventional medicine had given up on him, I fail to see what was wrong with him seeking experimental treatment from a renown integrative facility. Sadly, $161,000 is probably equal to or even less than the cost of most conventional cancer therapies, so I fail to see that as shocking. Also, Blue Cross is notorious for denying everything they possibly can, so I would tend to wonder if they, as well as the drugmakers who charge such astronomical sums for these drugs, are truly the villians here, not CTCA. On the other hand, when you aren't aware of the cost of cancer tx, $161,50.50 certainly sounds like a staggering sum, and while the media story might imply a mistake on CTCA's part for not getting the coverage approved, we have no way of knowing if they're truly at fault of if this is something Blue Cross decided to reject ex-post-facto.And picking up several people in one limo trip -- especially people actively undergoing cancer treatment -- sounds like it was not only very considerate of their comfort, but probably didn't cost much more than individual taxis for each would have. It's always fascinating to me how people see things so differently based on their individual biases.
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Hi Yazmiin,
So happy to hear you had such a positive experience. I'am sure that your revue of CTCA is consistent with the many well thought out and informative posts you have contributed to this forum. Thank you so much for sharing with us.
I contacted CTCA a couple of years ago after my sister was dx'd with lung cancer but she was hesitant to adopt the protocol and cancer was the undeserved victor in her case.
I would have loved to had seen my sister pampered, treated with dignity and respect, eating well prepared healthy food so her body and mind were nourished rather than filled with toxic drugs, lies and hospice care with a DNR order in fine print.
What price would I have paid for her care? What price would I have paid for her comfort? When she tried to keep an appointment with her MedOnc , the MedOnc called me horrified that she actually came to the community hospital. "You see, she is beyond help. I don't know why she doesn't realize her situation" is what she told me. She so deserved a limo ride that day because she died that night. After the surgery to remove a lung, chemo and radiation her insurance paid her community hospital, yes, I do believe she deserved a limo ride at the very least.
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I did read on another site that they were very interested in your insurance. Just saying.........
Our Fancy who loved CTCA passed away. She stopped posting on this board, but whent to Gina's. I was shocked when she died. Her prognosis sounded so good. She took supplements. However, before not long before she had mets (was so surprised at that too) here dh passed away. The stress of his illness and her lonliness may have played a role.
I am confused as to why CTCA gave the go ahead to the couple, but then the insurance denied payment. Didn't CTCA inform the insurance company as to what drug they were planning to use?
I realize CTCA cannot "save" everyone. No medical community can. Some of us will die from this disease while others will remain well.
Good luck to everyone who is fighting or has lived with this disease. It seems the fight is never over.
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I went to that facility, as well, and was just overwhelmed with joy about the royal treatment - and I adored the naturopath there.
BUT... months down the road, when the bills started rolling in, I found out many things they said in the financial "counseling" session turned out to be bogus -
You sound soooo happy so I was hesitant to say anything.... but please be careful if finances could be a concern for you.
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I had a friend that went to the Zion CTCA location. She had pancreatic cancer. CTCA told her the cancer she had was treatable and "curable". She spent 4 months at the center in Illinois going through treatments and tests. Then they sent her back home to Cincinnati because there was nothing more they could do. She died 2 weeks later...
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I will say I always like the sound of the place. Since I live just blocks from Sloan I go there, but I am glad you found a good fit!
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Wow, Yazmin, thanks for taking time to write such a thorough summary of your experience! I called them when I was first diagnosed and was impressed with my initial conversation and their answers to my questions. My impression was that they are a high-end, fully integrative facility. I didn't follow through because I expected that they would be expensive (and why not? As with just about everything else in life, you get what you pay for).
And picking up several people in one limo trip -- especially people actively undergoing cancer treatment -- sounds like it was not only very considerate of their comfort, but probably didn't cost much more than individual taxis for each would have.
Absolutely -- and possibly even cost less. In my former corporate career, I was instructed by my VP to go through their limo service rather than hiring taxis when I traveled. I thought it was unnecessary extravagance, until I actually compared prices.
As for digging up failure stories for an integrative facility, I think all of us who are thinking people understand that so far, no cancer treatment center has a 100% success rate. Of course, most of us on this board have the couth and good sense not to dig up tales of tortured death brought on by chemo/radiation and hold up one or two or five examples to say, "See? such-and-such cancer center is a fraud!"
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Hi, Deni:
CTCA contacted my insurance about 2 weeks before I went to Philadelphia, and obtained approval for my complete evaluation. I am lucky to be well-insured, and I don't expect any financial diffficulties.
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And Julia/Crunchy (such a cute stage name..), Deanna, Pill, Efflorescing, Cookie, Shirley....You know, I think that you all could end up liking the CTCA as much as I did, because there is no doubt in my mind that you would approach it with an open mind.....Now, of course, there is no facility out there that has a 100% surefire cure for cancer, or they would be VERY rich
. I did mention that I came across many people at Stage IV at the hospital, just as I would have met the same number of people in that situation at other cancer hospitals. But I was just overwhelmed by the tremendous customer service.
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Dear Yazmin,
You know what really impresses me? You sweetie....you!!
Evidently you are doing all the right things...diet, supplements...the works. You took control of your life and have reaped the beautiful benefits...NED....three little letters of the alphabet but oh so sweet to hear!!!! -
Yah Yazmin. Wonderful news, what a good day!
- please tell us your protocol!!
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Yaz - yes, as Nan said - you are a victor in this battle. NED! That is the best news in all of this! Congratulations. It would be great if you would share your protocol!
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I would expect a place like that would have a lot of stage IV patients. They have probably already tried everything else.
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Yazmin---You are so generous to take the time to write this detailed, valuable report. I'm sure people have printed it up. It is so rare to have somebody write their first-person experiences at length and we love first-person accounts because there is no substitute.
Your report also reveals the careful way you think about and include information that people might want to know. You must be a writer or reporter of some kind. I urge you to post this report/article on other online cancer groups and/or try to get it published in longer form in a publication.
My concern is that we on this board might be the only beneficiaries of your unique perspective.
Can we post it on other groups?
ThankyouThankyouThankyou!
anom
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Dear Deni, Nan, Anomdenet: Thank you for your kind words. This group is very important to me, I am truly convinced that being a regular on this Board has been a determining factor for the past 4 years. So much support! So much balanced and OBJECTIVE information coming from all directions. So much positive vibes!
By all means, please feel free to post this everywhere. I, for one, have been going around posting information from this Board elsewhere and I will certainly continue with this.
Now, one of the reasons why I was so worried about this looming evaluation is that I am flying to Paris (France, that is) this weekend, and I was terrified something would come and crush all my plans. And talking about flying, I have inserted my contact information in Fumi's (TimTam) wonderful database website. This really is a wonderful initiative from Fumi, I think. I am still trying to find ways to load more information (like my contact info in France), but it is going to take me a while to really know how to use Fumi's site.
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Oh, gosh, have I missed something?
Who is Fumi and what is the address of her site?
Yazmin, bon voyage, you lucky one!
*
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Yazmin,
Thank you for posting about your experience with CTCA. I have been going to CTCA in Philadelphia for two and a half years with Stage 4 triple negative BRCA1+. As expected, I've had recurrences and each time, my oncologist (Dr. Willis) and his team was able to get me back to NED (where I am now). I have taken advantage of all they offer -- each time I go I have a reiki treatment and acupuncture, even if nothing is wrong. (I haven't had a chiropractic treatment yet, but my husband has.)
You are right when you say you get the royal treatment. Patient is primo! Whatever you want is their direction. After coming there for 2.5 years, practically everyone knows me and it is so nice to have them greet me in the hallway by name. I've become friendly with the CEO and I've got stories about him stopping what he was doing when he saw a woman in pain. He stayed with her until the pain management folks came to help. It's that way from the top down.
Last year, at this time, I was in need of intrathecal chemo on schedule once a week on Fridays. Well last year, Christmas fell on a Thursday and the clinic was to be closed on Friday. Well, my Nurse Practitioner and the oncologist's practice manager (a nurse) came in on their day off to give me the chemo in the infusion are.
I had need to be hospitalized there over the summer for a couple of weeks (don't ask) and I missed my doggie. Other than therapy animals, one cannot bring pets. Well, they looked the other way on Saturday when DH showed up with our Rosie (a small maltese) and I got to snuggle with my sweet puppy. Patient is #1.
I could go on and on with great stories about CTCA. My bottom line is that I am NED and no one prior to CTCA even held that as a possibility. Stable, maybe, but not remission.
Cheers,
Caryn
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Dear Caryn:
Way to go and CHEEERS! We seem to have exactly the same impression of, and experience with the Philadelphia CTCA. I am so happy that you are also NED, and I am not one bit surprised by all those different little things done at the CTCA (which add up to something huge, really).
Frankly, they have customer service down to a science and apart from treating cancer, I feel they should provide customer-service courses/seminars for other companies (medical or not) out there.
Please keep up the good work (staying NED). Happy Holidays.
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It sounds like a very accommodating place. It really would be nice to see the integration of tx at our 'regular' medical centers. My hope is that it will be common place within the next few years. Too many of us are left 'doing our own thing' and hoping for the best.
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prettyinpink100: You are right: the CTCA way is the way it should be done at our "regular" medical centers. The patient is king, the patient is the boss at CTCA. And they appear to be tackling "difficult" cancers with great success, thanks to their open-minded stance. They are willing to look in all directions and go the extra-mile to do what's best for the patient's wealthfare (which, as I found out the hard and painful way, is not necessarily a priority elsewhere).
Yes, that's how it should be done everywhere, and hopefully, there is more and more support for this new mentality in the medical community at large. It took me for ever and ever to find them (with a lot of help from this section of the forum), but it was worth the wait.
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Yazmin ~ Have a safe & wonderful trip! Sounds like you're staying abroad for awhile??? Lucky you! Deanna
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I'm upset about some of the posts here. I understand that we all like to come get support and a boost, but I really think to expect that on this post is not realistic. There is a difference between a "pep talk" kind of thread and a "review" kind of thread.
The subject line is all in caps and the first post is a glowing review based on Yazmin's first impression of CTCA. And that's fine. What isn't fine is to be rude when others post an alternative experience.
I went there, too, and I can't sit by in silence just because it's not uplifting news to hear. I was betrayed by the folks at CTCA and I don't want to see it happen to others.
I support Yazmin and her choices, and I wish her all the best. But this IS a public forum, and the information will be out there for folks to read for a long time to come. Readers (who may be researching this facility) have a right to hear opposing views.
CTCA told me my insurance was checked and would pay 100%. They told me they waive the difference if insurance payments didn't cover, for some reason. They said they help you write appeal letters, sometimes many of them, if need be. The also gave me a very LOW $$ figure that I would have to pay out of pocket, but it was a mere fraction of what they billed me.
When I tried to talk to them about waiving fees and writing appeals, I got the blank stare, no return phone calls...etc.
I did not go out looking to "dig up" some story - this happened to ME. It's wonderful if Yazmin has in network insurance and no worries, but for the sake of others who consider going there, this is just a friendly heads up.
If the "happy-no-worries" finances speech they gave me during my initial visit had been true, I'd still be going there.
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I would have loved to have been treated by a staff of hospital workers who cared about me after having complications from 4th TAC Treatment (small bowel obstruction). During my entire week not one nurse acknowledge my breast cancer or offered any encouraging words my direction.
The male cleaning staff all looked like they just got out of prison with tatoos peeking out on their necks and fingers. The hospital allowed the male cleaning staff to enter our rooms at 11:00 p.m. at night and flip the light on to empty a waste paper basket.
If not for my entire family taking turns to watch over me and get the nurses to actually answer the buzzer from their patients for water or assistance to be unplugged to go to the bathroom--my week would have been more HELLISH. They did manage to give me hospital induced pneumonia--which brought me back to this wonderful hospital for another 5 days of HELL!
After the stay in HELL for those two weeks.......I came home with sleep deprivation and the need to take ATIVAN for the anxiety that I now had. During my surgery and chemotherapy I never was on any medication except for chemo premeds and one hospital stay destroyed all of my peace of mind.
The wonderful hospital was KAISER of Manteca, CA
Today if you have KAISER you can now go to a brand new KAISER hospital in my city. That will be a good thing should my husband employer ever drops all the other health insurances and decides to just keep KAISER.......the only good thing is it is a brand new hospital.
So being in a hospital that deals with only cancer patients and cares about the WHOLE PERSON would have made me feel so much better. Having chemotherapy and being in a hospital who could treat any complications would have made my nights more comfortable. Being able to talk to a person about how I was feeling or someone giving me a upper back massage may have helped me sleep. Yes.......all of that would have been welcomed!
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Yaz - have a safe and wonderful trip! hopefully you will not get snowed in!
Rumoret - sorry you had such a horrible experience. It is so true that the hospital is the LAST place one can get any rest. They flip the lights on at all hours. Yell up and down the hallways regardless of the hour, and basically are inconsiderate of the patient's basic need for rest in order to heal.
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regular centers treat people without insurance, at least a certain number of them. I wonder if the same it true for CTCA. At any rate, I wonder the cost of those three days at CTCA to the insurance company.
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Dear Pill, I just realized that my reply (which was referring to the article about the gentleman who passed away after a stay at CTCA) was posted after yours -- I didn't mean to minimize your experience in ANY way and I now see how it may have appeared that I was. My reply wasn't referring to your post at all... I agree with you, it's important for everyone to have a free voice to speak up, whether positive or negative, about their own experiences.
Your sharing what happened to you there is far different from someone running off to Google search terms like "death + scandal + CTCA" then posting the most horrific story that they found (especially when the person posting has a habit of doing such things).
Please accept my apologies and if you would like me to delete my reply, I'll be happy to do it.
Re: your being lied to there, that is obviously TOTALLY unacceptable. I'm not a litigious-minded person, but I would consider suing in that case, especially if you have everything they claimed in writing. I'm so sorry that happened to you. (((((hugs))))))
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Dear Pill: I can see from your post that you are very upset. Of course, different people have different experiences with everything in this life. It is, indeed, outrageous that the financial aspect of things caused you so much trouble....I would like to apologize for my all-caps title: what happened is that I typed the whole thing in Word, first, and I am used to typing long reports in Word with titles in all caps. It was certainly not my intention to be arrogant or "flashy". But have I also been rude in responding to people? I would like to know where, so that I can, perhaps, clarify, or apologize again, because I always thrive to be respectful to others.........Had I realized that my all caps could be perceived differently, I would have been more careful, for sure.
Hi, rumoret: I am sorry to hear about your ordeal at the hospital, but not surprised at all: I myself have been in such hospitals in the past (albeit for minor problems) and it's true: there is absolutely no way to rest in such places, so I don't know how they expect people to get well that way.
Hello, Anomdenet: I am talking about the secure website where Fumi (TimTam) has posted all those beautiful pictures of the reconstructive surgeries of our fellow breast cancer posters here. There is also a database that she created to make it easier for all of us to keep in touch if we wish, and I think she has done a fantastic job.....
Salut, Deanna and Deni: Yes, I expect to have to go back and forth in the future.
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Yaz, most important in your post is your great results! I am so glad you're doing well.
Thank you for describing your experience. I've heard a lot of reports about the cost being expensive, but so were the treatments I received and my community seems to have a never ending supply of doctors who stress me out and piss me off. Thank goodness I left town for my surgery. My surgeons in new orleans also provide ground transportation, and it's just priceless to feel pampered even for a short while. It bamboozles me to this day that so many aspects of my 'care' involved unnecessary stress. There's lots of medical professionals who could learn valuable lessons from CTCA.
Pill, I am so sorry you're getting gigantic bills from CTCA. I hope they write it off at some point. Not that it would undo the stress you've already experienced financially. I remember getting the bill for my chemo while I was nearly finished with rads. By the time the insurance paid their portion and 'negotiated discounts', there was still $47,000 left over! It's enough to cause post traumatic stress!
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