My Experience At Cancer Treatment Centers Of America

I have been working hard to beat my carcinoid cancer. So far almost every path I’ve taken has been a dead end. I am happy that the Everolimus (a.k.a. Afinitor) is keeping some of my tumors from growing but I’m hoping for more. I’m hoping to somehow extend my life. How? Who knows? Surgery, Chemotherapy, alternative therapies are all part of what I consider possibilities. My problem seems to be that most of my doctors are not willing to consider anything except chemotherapy. I’m not saying that this is wrong but, I choose to not simply accept that as fact. In other words, if there is another answer then I am committed to finding it. In that vain, I just traveled to Georgia to the Cancer Treatment Centers of America. They mentioned that they often offer answers that other cancer hospitals do not offer. So, I went. Here is my experience at Cancer Treatment Centers Of America.

My First Impressions

I am going to be completely honest with you about this. I am a cynical New Yorker. It’s not that I don’t believe that people are good but I don’t believe in a free lunch. I always think there’s a catch. Cancer Treatment Centers Of America offered me Free Travel for me, my wife and my son as well as free food and free hotel lodging. I never stopped looking for the “catch”. There was none. There was no catch and no tricks. 🙂  I was amazed by that. There were some drawbacks which I will get into in a bit but overall, they came through on what they offered.

They also took care of getting all of my records. I am so used to gathering together all of my records from all of my various doctors that I was shocked when they did all of the work for me. Now, if you have carcinoid cancer then you know how it goes. If you don’t do it….nobody cares enough to do it for you. You have to pull together every scan, every test result, your treatment timeline and on and on. Otherwise, it doesn’t get done. Oh, they ask for permission to get your records but they never actually bother. Not so at the Cancer Treatment Centers of America. They did almost all of the work. We gave them the info and they got all of the information. Impressive.

Well, after all of that, I had my hopes set high. It seemed that maybe I had finally found somebody who might think outside of the box a bit. Maybe somebody who might have something new or know about something old that works better. My first impressions were nothing but good.

Reality Sets In

Now, that sounds worse than it was. The reality was that it seems that they were really not much different than my current doctors. In fact, they even said that it looks like they will be recommending a similar approach to fighting my cancer as my current doctor.  They suggested that unless I disliked my current doctor (or really like them) that I should probably stay local. The reality is this. They offer similar treatments as other cancer hospitals but offer it with added services such as nutrition, naturopathy, counselling and a few other services. It’s nice to be offered those services but the hospital that I go to now offers similar services including legal but I have to ask for it rather than having it “scheduled” into an itinerary. Having services “scheduled” in for you is more of a marketing thing if you ask me. Marketing is not necessarily bad but it was a bit of a let down. They seemed to stress the “touchy feely” things rather than the hard science. They even offer excursions like a cruise ship. That’s not why I was there but it was nice.

My last note to you would be about the food. They say that they serve organic food in the hospital cafeteria but that’s not really true. The food was good but not all organic. There was tons of sugar, aspartame, sodas like coke and other things that are definitely not organic and even contained known carcinogens like the caramel coloring in colas. Finally, a lot of the food, especially the drinks, were served in plastic. Now, for me that’s a huge “no-no”. I am convinced that plastics have played a role in my cancer. After all, most of them contain some sort of endocrine disruptor and synthetic estrogen mimic. If you’re interested then you can read my post Is Cancer Triggered By Plastics. I’m not complaining but you should know the truth.

Travel Was A Nightmare

OK, here’s the part that was bad. Travel was a NIGHTMARE and it was their fault. Usually, being a control freak, I control everything that I can in a transaction. The reason I try to control everything is because if something goes wrong then I can only blame myself…unless it was beyond my control. Well, I didn’t do that this time. I dropped my guard. You see, everything was going so well until we got to the travel accommodations.

The first problem was that they waited until the last possible minute to book our flight so…..flights were fully booked. The next problem we had was that their travel agent did not seat us together. Now, if we were traveling without our 7 year old son then it would’ve been no problem but they had him sitting by himself. When I called to fix it they referred me to the airline! Now, that is annoying. They make the mistake but I have to fix it. Well, we fixed it and we got there. They also reserved the hotel room for 1 day too long but we resolved that as well.

Now, we were in a hotel a good 30 miles from the hospital which wouldn’t have been an issue except that the shuttles to the hospital only run once an hour and not on weekends. So, they set my itinerary with heavy appointments on the weekend but with no transportation to the hospital or back. I kept checking and they kept apologizing and got us a ride. That’s a bit frustrating.

On the final leg of the trip the shuttle to the airport did not show up. We were scheduled to be picked up at 5pm and they didn’t show up. So, we called at 5:30 and they promised to be there in 20 minutes. Somebody showed up and took 2 couples out to dinner. Yup. A driver showed up and took 2 couples out to dinner while about 12 people sat in the lobby waiting to get to the airport. 6pm and still no driver for us. Don’t get me wrong, another driver did show up to take a couple to Walmart but no ride for any of the people going to the airport. 6:20pm a car showed up, a driver walked in and left with an empty car. Now, some of the other people were raising their voices on the phone. I called and was told that I needed to be more patient. Hmmm….ya think?  It takes 30 minutes to get to the airport and I needed a wheelchair because I cannot walk, let alone run, through an international airport with a 7 year old child and luggage. 6:50pm and the driver finally showed up. I had to ask him twice to call for a wheel chair. His response? “My job is to drop you off at the curb. It’s up to you if you get on a plane or not.” I responded with, are you really just going to leave me at the curb with no wheel chair?! Really?!  ….and then I stared at him.  He called again. “Some guy says he can’t walk for some reason and needs a wheel chair.” That’s right “for some reason”. I guess because I could walk to the van he thought I was spry and nimble. The wheel chair showed up. Why, oh why did I need to do that to get a wheel chair.

In the end we barely made the flight. They actually had to hold the flight for us. I am sure that everyone else missed their flights. It shouldn’t be like that.

Here’s what I should have done and you should consider doing if you choose this option in your cancer fight. My final consultation was around 2pm. I should have jumped right on a shuttle and gone straight to the airport. Yes, it would’ve been a long wait but I would have eliminated a “breaking point” in my travel plans. Often, simplicity is the key to success in a complicated situation. Eliminating possible problems by showing up early is the key to reducing stress, don’t you agree. That’s what I did wrong.

The Good The Bad And The Fugly

So, there was plenty of good but there was also plenty of bad and a bit of fugly. Honestly, I just wanted to say fugly so let’s skip that. 🙂  The good was great! There were people there who couldn’t do enough for you. In general, those people were the regular people. The receptionist, the person handling our travel, the MRI technicians and people like that. How are you feeling? How’s your mood? Are you stressed? Upset? Depressed? Your son is cute. You have a lovely wife. Hang in there. One receptionist took my son for a walk, let him play computer games on her second computer and had candy for him to munch on. This was typical and we all felt cared for.

As you rise through the ranks and people begin to acquire titles, money and career paths the empathy seems to take second place to those things. I was getting interrupted, ignored, talked over, questions went unanswered. I was amazed. My oncologist never even told me where my tumors were growing, shrinking and remaining unchanged. It was disappointing.

I got to meet somebody called my “Nurse Advocate”. She’s was supposed to be on my side. I made the mistake of believing that. She ignored me and focused on my wife. My wife kept trying to redirect her back to me and my issues but my “advocate” was not interested.

We sat in the cancer fighter’s lounge and they had a boxing glove with signatures. I said to my son, “Look a boxing glove with famous boxers on it.” and we walked over to look at it. We horsed around a bit with it and I let him beat me in the chest. The little beast loved it. It made me laugh.

As I looked at the glove I didn’t see any signatures that I recognized and so I asked if there were any famous boxers who signed the glove. Obviously, that question was too “male”. “No, no boxers. Cancer fighters. Which are better.” and my “advocate” turned and walked away abruptly. “Really?”, I thought. “You don’t think it wouldn’t be better to have Evander Hollyfield’s name on that glove or Sugar Ray or George Foreman?”  Then she returned to my wife and told her she could get a shopping excursion or have her hair done or get a massage. “You can be pampered while you’re here” she said. My wife wasn’t there for any of that and was insulted that I was being treated so rudely. My wife noted “She obviously has a problem with men.”  She never once offered me a service, an answer to a question or even a few minutes of her time. Believe me, I tried to engage her. I had questions that are still unanswered. Being so focused on gender in a cancer hospital is really abnormal. Needless to say, if we do go here we will request a different “advocate”. Maybe one who actually looks at me.

It’s funny how I didn’t have any of these issues with the receptionists, MRI technicians, travel people and so on. Only those career driven individuals who see you as something other than a cancer patient seeking compassionate care.

Well, that’s the good and the bad. If they offer any treatments that are ground breaking I will keep you posted. I’m sorry that I am giving the impression that it was such a bad trip but, the negatives were so extreme that they were overwhelming to me. Especially the travel and the lack of care from the upper levels of the system.

I hope my honest account helped you in some way,
Ed – To find out how to use my images on your blog for free – Click Here

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12 Comments

  1. Hi Ed,
    that was a real eyeopener for an English woman! We just get appointment cards here none of the so called extras. I struggle sometimes to get to mine with diahorea problems in the morning. I have also had trouble getting a meal on a ward, full stop, never mind organic!

    All of the career cancer carers I have come across have been focused on my care and all have been willing to talk to me about my treatment; but my problem has been the total lack of understanding of neuroendocrine in general. Me having to tell Doctors what it is. So we each have extreams in the treatment of the same condition. You seem to have more difficult choices to make. I have never been offered chemo, they don’t like it here for our condition. I am more or less nicely told this is available take it if you want.

    It sounds as though the advocate was there to distract your wife. Maybe a bit of divide and separate so they could try to influence you about any treatment with out interruption. It is a real money maker for them. They fail to realize you want your partner to have opinions and influence. Makes you wonder how the woman qualified as a nurse.

    You are right about getting places early so you can sort problems as they occur. These people should not have put you through that stress, especially with your young son. Stress is incredibly bad for your condition. I would have got stuck on the toilet with the stress. I do hope you made a scathing complaint about the various problems you had. So it seems you came back with more questions about your treatment. Do let us know how you proceed. The travel alone would put me off.

    I have upped my greens since reading your blogs. I do like the way you give links to help us make up our minds. thank you and good luck Ed. Christine

  2. Hi Christine,

    My wife and I love England. My wife’s ancestor is the one who caused all of the trouble with you guys….William Brewster, Pastor of the Mayflower and the church in Scrooby that stirred up all of those pilgrims.. We actually went all the way out there in the country to see the church. The church is older than our country. Soooo, we come from a line of trouble makers. 🙂

    It’s crazy that we have to explain to doctors about our condition. What amazes me more is that they never seem to care enough to educated themselves even after we have given them the “lecture”. They just learn a few key words and treat it like it’s any other cancer.

    So, what are they actually doing for you? Chemo doesn’t seem to work that well for me but there are a few combinations that have good track records for other people. CaptTem (Capitoline and temodar) but that one did not work for me. The Everolimus (Afinitor) that I am taking is keeping some of the tumors from growing in me now. Quite a lot of people have surgery….I wish I could. They mismanaged my cancer until it was too large to remove safely. 🙁 I’m still fighting.

    If they call or ask for a survey then I will be completely honest with them. One last thing that is kind of funny but a bit twisted too. So, I sat in the first seat in the bus because I could not get to the back. We get to the airport and I stand up to get out and I literally got pushed off the cancer bus!!!! By cancer patients!!!! They were late for for their flights and pushed me off the cancer bus!!!! The driver caught me and kept me from falling. I’m not angry, although I am shocked, Everyone was in such a panic. Anyhow, I know it’s a bit sick but I look back and think it’s a bit funny. I almost titled the blog post “I got pushed off of the Cancer bus.” 🙂

    I’m glad you found my blog useful. Here’s a link to some of the veggies that have been studied and seem to fight cancer the best for everyone. The most common cancer veggies. http://www.carcinoid-cancer.com/master-list-cancer-fighting-veggies/

    I am currently studying DCA. If I can understand it well enough, and feel comfortable taking it, then I am going to try it. It seems to kill all kinds of cancers. I will try to get my doctor to monitor me but if he resists then I will do it myself and keep a journal. Here’s a great link about it. I am about to post another entry about it soon. I am also planning on publishing my journal here so that everyone can see if it works for me or not. Here’s the link. http://www.carcinoid-cancer.com/metabolic-therapy-to-fight-cancer-and-dca/

    Also, here’s a link on eating to fight diarrhea from a fellow carcinoid patient. http://bethsadventureswithcancer.blogspot.com/2014/09/long-time-no-update.html

    It’s great hearing from you.
    Keep fighting and stay hopeful,
    Ed 🙂

  3. Ed – great post even though it sounds like an excruciating medical experience. Are you going to go to Nebraska next to see about the surgery? At least CTCA didn’t give you any opinions that were completely off base. It seems to me that once you have progression the only choices are systemic like angiogenesis inhibitors (affinitor, sutent, others) or something like PRRT that isn’t even available in the US. I guess liver transplant is an option but a very dangerous one in my opinion. Good luck and keep us updated on your latest adventures.

    • Thanks. Yeah, it was frustrating. They told me they would call me after consulting the surgeon but no call. I’m not really surprised about that. Nebraska was another story in itself. Really unprofessional. I am actually putting it into another blog post so others will be aware. I’m thinking about trying DCA. How are you doing? I hope all is well. 🙂

  4. Thanks for sharing your experience. I would certainly be reporting your “nurse advocate”. Her behavior was certainly very non-professional. And as a registered nurse, that behavior infuriates me. It makes you wonder how she was as a nurse in a clinical setting…did she properly address and treat her patient then? Her supervisor may not realize how her behavior is unless you report it.

    • Well, normally I would but everything that happened was so subjective that it could be ignored so easily. If I am sent a survey then I will complain but, I’m not sure if I will make a special effort to complain or not. What’s even worse is that they never got back to me with the final recommendation for treatment. They said that they would call after speaking with the surgeon and that is over a week ago. Very disappointing.

  5. Ed, I am also a NET patient. There are so many helpful and educational sites out there for us. Especially on Facebook, believe it or not. There are people who read this blog that want to get in touch with you to offer GOOD advice. If you’d like contact me melindasheffield@aol.com

    • Oh, Hi!!! 🙂
      I absolutely will.
      I tried FB once before and nothing came of it.
      I was invited but when I tried nobody replied. ???
      Maybe I did something wrong.

  6. Hi Ed, Thank you for recounting your experience with CCA. I have heard mixed reviews before. I suppose there are the horror stories for all of us.

    I found it interesting, too, that I think you and I might be a bit similar in personality. I, too, am a “control freak” in how I see getting things done. I think largely that comes from the lessons I learned from my mother–“If you want something done right, do it yourself.” LOL

    When I started my life knowing that I was living with CC/NETs, I ended up going to an advocate at the hospital. They went above and beyond for me, but when it came right down to the end, the doctor/hospital won. I had to become my own advocate or I might have died on the operating table. Then I realized that I am an “advocate personality.” Had I been the patient advocate and the other been the patient, I would have continued to fight for what was best for the patient and they would have gotten it. And I would have lost my job. But I would have done what was right. Some call that a “warrior personality.” I recognize that not all feel that way. I think, in the end of that situation, the advocates in their office had to make the decision. Had I gotten what was best, they would have lost their livelihood/government jobs.

    I look forward to reading more from you. Keep fightin’ the good fight.
    Coral

    P.S. There are many people who have asked me over the years if I was “from New York.” 😉 I’m a west coast gal!

    • “…and I would have lost my job.” I would have done the same thing!!!!! ha ha ha !!!! We are the same! Funny! I am the “warrior” type and have thought “post cancer” that I would try to advocate for cancer patients. I don’t know how that’s done but I thought I would be good at it. I noticed you like to use images in your blog. I have a whole section that you can use if you like, they’re free. http://www.carcinoid-cancer.com/free-images-blog/
      No pressure of course…just resources for you. 🙂

      Talk soon,
      Ed

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