I Should Never Have Gone To Cancer Treatment Centers Of America

Previously, I wrote about my experience at Cancer Treatment Centers Of America. You can read it here. If you have already read it then you will recall that  they put me through multiple tests and scans and that they were supposed to give me a “treatment plan” in writing and review it with me. That did not happen. When I got to the end of my tests and scans I sat in the oncologists office and was told that the surgeon did not show up after I was told they would be scheduled in and consulted. I was told that they would need to get back to me. They only gave me a quick overview of what they felt my treatment should be. I was told that I would get a phone call from the Oncologist with a treatment plan after meeting with the surgeon. I now realize that I should never have gone to Cancer Treatment Centers Of America. I should have stayed home. Here is my final post on my experiences with CTCA.

My First Follow Up Call

An entire week went by and I thought that I would never get another call but I did. I will never know who the phone call was from. They did not introduce themselves and, in fact, never identified themselves as being from the Cancer Treatment Centers of America at all. I picked up the phone and I WAS ASKED TO IDENTIFY MYSELF. I refused and asked who was calling. She asked again. I refused again and asked who I was speaking with and she finally said that it was “Cancer Treatment Centers of America”.  When I was first setting up appointments sometimes they would say this is “CTCA”. I had no idea who that was…and then after I asked multiple times they would clarify. I really don’t get that. How hard is it to identify yourself clearly in the beginning of the call so that the patient knows who is calling.

OK, we got past the first 30 seconds of the call and she said that she was calling to follow up with me about what the oncologist had planned. My hopes began to rise. “I was wrong”, I thought to myself. “They did follow through”, I thought. Well, not so much. I got my hopes up a bit too soon.

As it turns out, she was calling to tell me all of the same things that they had already told me in person in the oncologist’s office. I said, that the oncologist had mentioned that they would contact the surgeon and then get back to me with a plan. The person on the phone was trying to get me to come back to Georgia again to consult with the surgeon!!!  What!???

I explained what the oncologist had told me again. That they would speak to the surgeon, inquire about the nanokinfe and other liver directed therapies and call me with a plan. That got me nowhere. So, I asked to speak to the oncologist…..they weren’t there. I asked when I could call and speak to them. Apparently, that is a task that no mere mortal can accomplish. I was forced to set a date for ANOTHER call back. When? Well, I was given a day but no time. At least the cable company gives me a time between 8 and 12. I have to hang around and wait for the call or miss it. Seriously?

I asked about the nanoknife and she said it was “off of the table”. What does “Off of the Table” mean? Did they ask? Did they not bother? I thought of that AFTER I hung up. So, I have no answers about that.

My Second Phone Call

OK, I must have made enough of a stink that the oncologist called me rather than some “assistant”. It’s amazing how much information you get when you speak to the actual person who knows things.

Well, we were on the phone for about 10 minutes and she basically told me to stick with my local doctor unless I had a reason to come to the Cancer Treatment Centers Of America. I do appreciate the honesty. The only thing that kind of annoys me is that she never really asked about the nanoknife. I understand that my disease may be beyond anything the nanoknife can fix but just be honest about that. The doctor basically avoided the question.

I’m done with these guys. It’s sad too because it looked so good at the beginning. They had promised to send me all of my scans on a disc. Do you think they will?  I hate to say it but, I had my doubts. Is that terrible of me?  Well, they did eventually. Finally, they told me I have a problem with my heart. When I pressed the doctor for further information they declined to answer. Really?! I don’t understand this place at all. She told me to get retested locally. Grrrrr…..

My Third Phone Call

Well, I can say one thing about CTCA, they call you a lot. You don’t get much information and the phone calls never seem to result in any action on their part but at least they call.

My third call was from the person who set up my appointments the first time. She was so very nice!!!!  I felt bad telling her the truth. No, the surgeon was never put into my schedule and nobody ever contacted him at all. No, nobody asked about the nanoknife or other liver directed therapies. I asked for them to call me back with the information. I was told that I had to go back to Georgia. I told her that my wife’s sick time was used up and that we could not. She said the only thing that she could do was send an email. Nothing has come of it. She apologized and  said goodbye politely and we hung up.

Here’s what my brain looks like right now.  (????????????)  I don’t get it!  If they just tried a bit harder they probably could be a great hospital. They’ve got the right idea.

I Should Never Have Gone To Cancer Treatment Centers Of America

I should never have gone. I kind of have the philosophy of “walking through every open door”. In other words, if there is something I haven’t tried then I try it. You never know which door may lead you down a winding hallway to another door labeled “cure”. Don’t you agree? So, I guess it’s good that I went but it’s just disappointing that they weren’t any different than my current doctor and seemed so inflexible. They really market themselves as innovative but it didn’t seem to play out that way for me. In fact, my current oncologist at my plain old hospital is much more responsive and helpful. I’m sure others have had a better experience but I wish I had stayed home when I look back at the whole experience.

Stay Strong & Keep Fighting,
Ed – To find out how to use my images on your blog for free –
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  1. First of all, I want to thank you for sharing your story re: CTCA. I’m sorry that you had such a bad experience(s), But, I want to encourage you not to think it a waste, or you should have not gone, etc. I want to offer you another possibility as to why you had to do this.

    I do not think anything comes to us “by accident.” The very fact that you are so willing to share this experience may be the reason. That you are so articulate, and do it in a logical, not (entirely) emotional way counts for something and makes me listen and see other sides. That you come across as fair, and looking for the good, shows that you aren’t only a naysayer. That you are direct, and share who you are–good, bad, or otherwise–is testament to your genuine heart, your humanness, and your ability to have a cool head in the face of adversity, counts for something. It makes you credible, as you tell your story. THESE are the things that we need when we tell our stories. You possess them.

    So many people tell their stories and come across as the victim throughout anything and being whiners as they traverse through the journey of life. That is not you, even though I can see your frustration and that you can feel negatively. You do not let it run you life.

    The reason you were asked by life to go through this…is because you can get through it…and you did and you do … and you have. And you still are able to talk about it as a rational, sane, human being. If you did not, I would not have listened/read.

    There are some of us in life…. that is our purpose. We are the warriors. We don’t fight to win. We fight because it’s the right thing to do, understanding the risks involved. We are a rare breed.

    Thank you for being one those who would “get me,” should we ever meet.

    • OK, you did it.
      You completely changed the way I feel about the whole thing!
      Thanks for the pep talk and thanks for “getting me” as well. 🙂

      • Ed, I often hear so many people go on a negative rampage, or live their life with the constant nitpicking of negativity, or they take the conspiracy road (“out to get me”), and these attitudes and more can suck the very life out of us. It is not unrealistic for us to see the good that comes out of whatever comes our way. Goodness knows that life dishes out enough for us to spar that we don’t need the addition of the people who want to keep the blankets wet. We all have our moments, yes. But it’s when the moments turn into weeks, months & years. I’ve worked hard to learn how to lessen those days. Not easy, but we help one another by being uplifting, not dousing with more angst. Hugs to you and those who work hard to uplift you, my friend.

        • You made some good points. Usually, I’m pretty tough but when I’m doing MY part and the doctors, nurses and hospitals are not doing theirs then after awhile that can get to me. I guess, I took a “one-two” punch with Nebraska and CTCA happening one right after the other and it got to me a bit. To be honest, I’m really over the CTCA thing. It got to me for awhile but I felt the need to post the truth. (Warrior) 🙂

          The good news is that I met with my oncologist yesterday and he sat with me discussing options. He’s grouchy but I trust him. He’s not up on all of the latest carcinoid treatments but he knows enough to fill in the gaps. I send him articles and things and we work together. Much better than before. The bad news is that it looks like my chemo stopped working. I’m thinking about PRRT or embolization.

  2. Very cruel to offer the possibility of help to you and jerk it back like a carrot on a string! I wonder if it’s all about the money.

    • The truth be told, it was much more about red tape. They really are no different than other hospitals / cancer centers. Even the last phone call that was made was all about “procedure”. No we cannot have the surgeon call you. You will have to come back. Even though they made the mistake. Rules are rules. The truth is, there are some very caring people there who take their “mission” seriously and then there are others who are there to collect a paycheck.

      I’ve already gotten back up, dusted myself off and I’m preparing for my next “move”. I only posted this for others to read on the off chance that it would help somebody. I’m OK now.

    • Yes, I totally agree. Is it not like that in Canada and the UK? Don’t get me wrong, I don’t think it’s always that way here in the US but definitely true in some cases. The good thing is….usually…..you can tell. I had one doctor who would only prescribe drugs that he was being paid to study by pharmaceutical companies. I didn’t stay there very long….couldn’t get away fast enough.

      So, how’s the move? Settled in yet? I know you were struggling to get a daily routine going. It’s been 1 year since we moved into our new house and we STILL have boxes! The fun thing is, you get to see things that you love. We just found a box of pictures. We don’t have anywhere to put them but still fun! ha ha ha!!! 🙂

  3. I have to agree with Coral. All of us are presented with situations, people, hardship, etc. for a reason. We may not always understand God’s plan in things, but know there is one.

    I see the way you write about things, and share your experiences throughout this journey you’re on, and I know that in part, this was part of “His plan”. I know that somewhere, there is someone not able to research, or maybe doesn’t have the self assurance you have to speak your mind. THAT person is helped by what you do here, and what you write.

    You know I love you. And I struggle to see God’s plan in this experience myself. But, I do feel good knowing (because I do know) that you sharing what you’re going through is helping those people out there that might not otherwise know that it’s ok to question, to say no to a Doctor, or to seek a second (or third, or forth) opinion. I’ve said it before, but I’ll say it again. You amaze me with your strength and compassion!

    • Thanks Lisa, you are right. I have this little blog in the hope that maybe somebody else will be helped. Even if it’s because they won’t second guess how they feel when they were treated poorly in a hospital or by a doctor. 🙂 I try to be transparent……just being myself…and share. It’s the best thing that I can think of so I do it. 🙂

    • Thank you, Lisa, for your vote of confidence. I have gone through my share of “why me?” in life, which robbed me from much joy and nearly cost me my life several times. I’m not so sure of it being a plan devised by a G/god who is testing, allowing, etc., I can agree with you on your other points.

    • Hi Linda,

      Yes, thanks for the advice.
      I have been to a few specialists and I am aware of the list.
      The truth be told, I went to CTCA because they kind of “sold” me on it and I don’t like to leave any stone unturned. (If you know what I mean.) My current oncologist is not a carcinoid specialist but he is willing to work with other doctors that are somewhat. Since there are no specialists in my area that is the best that I can do. Unless, you know of a better way…..please share if you do! 🙂 I’m just an average guy trying to figure this thing out. 🙂

      Thanks again,

  4. Thank you for taking the time to write about your experience to help others.Your insight allowed me to hear the right answer about what to do for my family member. All the best to you and your family.

    • Oh, I’m so glad that I helped. This was just my experience but others have had similar issues. Have you found a specialist? Our cancer is not easily treated and most doctors do not understand it.

  5. Just to offer another side, I went to CTCA in Philadelphia a couple years ago. They could not have been nicer. Everyone was friendly and caring. This included staff just passing through wait rooms or hallways. They carefully explained my carcinoid cancer and offered suggestions for treatments. I was not pressured by anyone and felt that they were concerned that I make the best decision for myself. Since my carcinoid was elusive, no primary tumor located, I decided to wait before undergoing an exploratory surgery.
    When it finally metastasized in a lymph node, a few years later, I learned that CTCA were no longer accepting Medicare patients. I had just turned 65 and was disappointed to be shut out of CTCA. (They were not the only facility to be discriminating with insurance)
    Had the surgery locally, last January, It now appears it may have returned. I am off to see new specialists this week for options.
    I don’t know how people are expected to come up with the money for PRRT. It would totally deplete our savings with no guarantees.

    • I’m glad that you had a good experience but they have no specialists there (at least when I went) and they really lied to get me there. I don’t know why. The worst part is that they then billed me for quite a sum after promising not to and said that they only promised to pay “legal mumbo jumbo” followed. I complained multiple times and finally they did waive the fee but I would not recommend them for #NetCancer. Instead, I would recommend a place with a real specialist. Rocky Mountain Cancer Center comes to mind but there are others. 🙂 Oh, and yes, #PRRT pretty much wiped out our bank account but… I am alive. 🙂 You can read about it here – http://www.carcinoid-cancer.com/trip-four-of-my-prrt-cancer-therapy/

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