Their tagline is "Care that never quits." Well, that is, quite simply, not true. It might be true if you have an early stage cancer or a type of cancer for which there is a standard cure available. But if you don’t fit in these categories, then think twice (or more) about going to CTCA because they will quit on you and will give you your death sentence without caring much for how the news is delivered to you or how it might affect you and your loved ones.
I am going to go into more details below but if you don’t want to read everything, just know this (something I have learned the hard way):
1) If you have Stage IV cancer, think twice about going to CTCA.
2) Do not trust any doctor blindly. Do a lot of research, so you can ask the right questions and force the doctor to tell you the whole story.
3) Know that you are not a statistics and should never be treated like one. Cancer care should be truly individualized because no two patients are alike. Unfortunately, most hospitals don’t have time to individualize your care. It costs too much to do so.
4) If you have been told – by CTCA or other hospitals - "there is nothing else that can be done," do not give up hope. There are other options to try. Feel free to private message me if you want to learn more.
Now, on to the details about our experience with CTCA. CTCA obviously has a big marketing budget and know how to use it. Their advertising is everywhere and gives you a lot of hope, making it sound like they are a different kind of hospital who will turn every stone and fight for you till the end. Their facilities are certainly wonderful – they feel like a resort more than a hospital – and their food is excellent. You can also contact their Care Management line at any hour (day or night), and you will get someone to assist you.
That’s all great. But don’t get fooled. Once you start peeling the onion and you get to the important stuff, they are just like any other hospital out there. They claim you are going to get treatment that is 100% individualized to your person, not just to your type of cancer. That’s a good promise because the truth is, just because you have Stage IV Colon cancer (like my fiance’ has), it doesn’t mean you should be treated exactly the same as any other patient with Stage IV Colon cancer. Cancer is as individual as the person whose body it grows in. Problem is, CTCA does not follow through on that promise. They have their go-to treatments and therapies, and if those don’t work, they have no plan B, just like most hospitals. Why? Because it costs too much to truly individualize treatment for every patient and think outside the box to find alternative solutions that might work better. Much easier to treat you based on statistics and go with the most standard treatments.
That’s what they did to my fiance’. They just put him on a cycle of chemo infusion that was exactly what he had received during his first bout of cancer (back when the cancer was at an earlier stage). When that didn’t work, we asked if that’s normal and we got a simple, "Yes, that happens often because the body builds a resistance to it." We asked why. They said, "we don’t know." They then gave him a chemo pill to take but failed to tell us that this pill was not designed to cure him, just keep his tumors at bay (that is, if the pill even works, given it has a "whopping" 30% success rate). It wasn’t until two months later that we found out the truth and that’s because we did research and started asking the right questions. At that point we also found out that the chemo infusion and the chemo pill would do nothing for keeping new brain metastases to show up (my fiance’ had colon cancer that had spread to the lung and the brain; he had been previously treated on the brain tumors through gamma knife – a kind of topical radiation). So basically they were doing nothing to make sure there wouldn’t be more metastases growing in the brain. A piece of information we would have liked to know RIGHT AWAY, and yet we were kept in the dark.
We asked what were the options if the chemo pill would not work and they said the best bet was to find a clinical trial that would take him (hard to do with a history of brain metastases) but it would be up to us to research trials and contact them. It was not work they would do for us (of course, if they can’t get paid for it, why bother trying to help save a life). We asked how much he would have if the pill didn’t work and we couldn’t find a trial. Nonchalantly, the doctor said, 4-6 months. He said it as if it wasn’t a big deal at all. We were STUNNED. We asked if there were other options at all. The doctor said that there is simply not enough information out there about the type of gene mutations associated with my fiance’s cancer, and therefore there is no standard treatment they can use (side note: these mutations have been known for 30 years and the conventional medical system has yet to find something to address them). Mind you, he only finally talked to us and answered our questions because we were finally able to ask the right questions. To do so, I had to pretty much stop working for 3 weeks and start researching full time to even begin to understand the situation and come up with specific questions that would put the doctor on the spot and force him to stop being vague.
The doctor also failed to monitor his brain through periodic MRIs (we found out later that, when you have a history of brain metastases, you should get an MRI every 2 months). When we asked why he wasn’t checking the brain, the doctor said that the situation there seemed under control and the tumor treated with topical radiation seemed to be shrinking. Less than 2 weeks after we asked this, my fiance’ started having symptoms. We demanded an MRI and discovered his original brain tumor was growing back and he had 6 more growing. They then had us talk to a radiation oncologist who recommended whole brain radiation. When we asked about the risk and side effects of that, he said (almost laughing!) that any side effects would show up after 2 years or so but no need to worry because my fiance’ would not be alive by then anyway.
To sum it up: Their sensibility and bedside manners are nonexistent. They don’t even understand how certain life-altering news can affect the patient or a loved one. You are just a number to them, and if you are a hard case, you are a bad statistic, which is not good for the hospital’s reputation. It is horrible to realize your doctor is already treating you like a walking dead. They kept us in the dark and also dragged their feet, wasting precious time, resulting in the cancer getting worse. And when you have stage IV cancer, believe me, time is of the essence. If you don’t fit in their protocol or "standard of care" (meaning, therapies they can apply to the greatest number of patients), not only they cannot help you, they give you the illusion they can help and waste your precious time in the process.
As for us, we didn’t take my fiance’s death sentence for an answer, and we started looking elsewhere. We are now getting alternative treatment somewhere else and we found some hope again and we are continuing to fight. At least now my fiance’ is receiving TRULY individualized care and we are being treated with compassion, not like a bad statistic. Funnily enough, the place where we are at gets a lot of (mostly Stage IV) patients who have been burned by Cancer Treatment Centers of America. I am not surprised in the least.
Bottom Line: No, I would not recommend this to a friend
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