My Experience Getting a Second Opinion at Cancer Treatment Centers of America – Philly locationfeatured

I remember my first contact with them well.

On December 20th I was  online checking out the Cancer Treatment Centers of America’s (CTCA) website, and decided to start a chat with them via text.

My only goal at this point was to ask them what their protocol was for treating stage 3 rectal cancer. I was questioning why the doctors in NJ I had met with wanted to do radiation and chemo together upfront before any surgery. This didn’t sound right to me. I wanted this tumor OUT as soon as possible, so I wanted to compare notes as to what I was hearing.

Well, the texter I was chatting with couldn’t answer my question, so I ended up on the phone with someone that I’ll describe as a “sales rep” who was named Brian and was very nice….but sometimes he was a little too nice, if you know what I mean.

He was hitting me hard with a sales pitch about how CTCA had at least 10 options in radiation treatments, and cutting edge approaches to cancer.

While I thought he was laying it on a bit thick, this sounded really good at this point.

So, I agreed to give him my insurance information so he could check out what type of coverage I had before we continued our discussion.  This took a few days, but he did call me back eventually. It was the Christmas holidays…..so we were playing phone tag.

He told me that Aetna (my insurance carrier) considered CTCA as out of network, but CTCA would offer me financial assistance. He explained what their deal was to me (which sounded too good to be true based on my salary level), but I told him I wanted something in writing before committing to this! He said…..just go for the three day orientation which will not be so pricey since it is all mostly doctors fees which is not the expensive stuff. He was right, so I agreed and decided to use CTCA as my 2nd opinion.

I was also being pushed by Brian the sales rep to do my required CT Scan and MRI with them in Philly to keep everything simpler and in house, but it turns out that the scheduling department could only get me in for their three day orientation on January 9th through the 11th. I had already booked a CT Scan for December 28th and my MRI for January 2nd, so I kept these existing appointments and CTCA would have to get copies of my results and images.  After all I wanted to know ASAP how bad things were and what I was REALLY facing.  I didn’t want to wait until January 9th.

Prior to my orientation visit, on January 3rd I had a phone call with a nurse who would be managing my case throughout my treatment (called a nurse navigator). She interviewed me to get my medical history, my cancer diagnosis, the names and doses of all the vitamins and supplements I was on, and what tests I’ve completed. This would help them determine if I needed any other appointments added to my schedule during the orientation.  I thought this was proactive and great.

After going on a roller coaster ride to get all my tests finished in time before my visit, January 9th finally arrived.

My brother and I drove to Philly the night before and stayed at the Raddison hotel, which CTCA has a special rate with. I paid $25 per night as the patient, and my brother’s room was $96 per night. So cost wise, this helped us out.

They had sent me my schedule in advance, so I could see exactly what was planned. Here was my schedule:

Day 1:

8:45am – Orientation and tour

9:00am – Check in to get processed in system and get patient wristband

9:45am – Meeting with nurse to get vitals taken (weight, blood pressure, temperature, oxygen levels)

10:00am – Meeting with general practitioner / review of my health history

10:45am – Meeting with Oncologist

11:30am – Meeting with the nurse navigator I had the phone consult with

Day 2:

9:30am – Meeting with Naturopathic doctor (to discuss natural remedies during my treatment like Calendula cream for radiation burns and eval of my current supplements)

10:00am – Mind body medicine introduction (music therapy,meditation, yoga, reiki, etc)

10:30am – Pastoral patient care (A preacher discussed group bible study and other religious based support offered)

****somewhere in here I had blood taken for blood tests required*****

2:00pm – Sleep screening (I had to wear a monitor to track my sleep to see if anything stood out)

3:00pm – Gastroenterologist meeting (to discuss my diagnosis and alternative options if surgery can’t be done)

Day 3:

9:30am –  Car pick up to go to surgeon consult in downtown Philly

10:15am – Meeting with colorectal surgeon refered by CTCA (Dr. Juan Poggio)

12:30pm – Pick up back to CTCA

12:45pm – Vitals taken (temperature, weight, blood pressure, oxygen)

1:00pm –  Regroup with Oncologist after surgeon evaluation

1:30pm – Regroup with Nurse navigator

2:00pm – Vitals taken in Radiology Dept

2:30 pm – Consultation with Radiologist

3:15 pm – I requested a visit with a financial counselor to discuss and get a screen print of the financial assistance they were offering me.  We squeezed this in here by just dropping by her desk and asking some questions.

3:30pm – Final discussion with Naturopath doctor regarding my supplements

4:00pm – Consultation with a Nutritionist

***

As I was typing out my schedule for this blog just now, all of these memories and emotions came flooding back to me.

My three day orientation overall was good, really good……but it was emotionally and physically EXHAUSTING.  Not just for me, but for my brother too who was with me at all my appointments.

This was mostly because I was sobbing all the time, especially on day one.  The emotional toll of finally coming to terms that I had cancer was hitting me very hard during this visit. Everything was getting VERY real…..and it was quite a bit to handle. Plus I was seeing rooms full of people with no hair due to chemo, people so weak and thin they needed to be in wheelchairs, and people barely able to walk. This sight is sooooo depressing and very overwhelming to someone that has just been diagnosed.  All I thought about was “Am I going to look like this too? How long is that going to take?”  Plus, day three was so jam packed, we didn’t have time to eat anything for lunch and only had a very late dinner. Thank GOD I always carry nuts and water in my purse!

But I had to get opinions and I had to get answers, so I had to push forward no matter how tiring.

The CTCA doctors were much more hopeful and upbeat than the NJ doctors I had met with.  This is what a newly diagnosed patient needs to hear!  While I don’t want sunshine blown up my ass if it isn’t true…..I DO want to hear some positive news if you can offer me some.

The two biggest highlights for me from the whole visit were as follows:

1. On day one during my discussion with the Oncologist, he said that Stage 3 rectal cancer has a chance of being CURED if everything is taken out during surgery and no more cancer is present in the body afterwards.  This was something I mentally and emotionally needed to hear.  He also presented two options for treatment. One that involved the chest port just like the Oncologist in NJ said they would do, and another option which did NOT require a port and would use chemo pills orally taken instead. I almost jumped out of my chair with joy!!!!!  I was so happy to hear I had a few options. I knew which one I would take.
2. On day three when I met with the outside surgeon, who I really liked, he took a look at my MRI slides and concluded that I was not borderline stage 4 as the NJ Oncologist had painted me. He was much more hopeful and said it did not look like the tumor had spread outside of the immediate area into surrounding structures. I was soooooo relieved to hear that.  He was very kind and told me as I was leaving  “have faith, you can get through this”.  His reassurance meant a lot to me.

After this three day visit I had to come to a decision as to whether I was going to use CTCA as my treatment choice or not. So, after meeting with the financial counselor and getting a print screen of the financial offer they were giving me (since all of their services would be out of network for me), I thought about it for a day and called them back to say that I wanted to go with them and begin my treatment.

Once I signed on the dotted line, the next appointment was then set quickly (which is what I wanted).  On January 18th I would have to go in for a radiation machine simulation, where they would make marks on my body and make a cast that I would use during my treatments.  A plan was set and in motion. I felt a bit of relief.

Here were the factors that made me decide to finally go with CTCA for my treatment:

• They gave me a non chest port option for chemo. This was my number one factor. THERE WAS NO WAY I WAS GOING TO LET ANYONE STAB ME WITH A CHEST PORT …MAKING ME FEEL LIKE A CYBORG.
• They were much more positive and gave me some hope that I could be ok after all of this
• They were much more open to an integrative medical approach, and would let me stay on the majority of my supplements and vitamins during the treatment that my functional medicine docs were recommending to me…..especially a few new ones that were added to help boost my natural killer cells (NK Stim) that are the body’s natural cancer fighters, and fish oil support to help support my body’s natural capability to cope with physical stress better (SPM Active).
• The financial support (if followed and adhered to by CTCA) was quite generous for rejected expenses by my insurance carrier, even for someone with a decent salary like myself. (I will cover the financial side of getting sick in another blog post).
• I liked the fact that they had all of their labs and MRI/CT scanner machines on site. I could knock out everything in one place instead of running around like a chicken without a head to different places.
• I really liked the surgeon they referred me to, and he was very positive and experienced.
• I liked that they had side services like faith based support, massage therapy, accupuncture, etc if I wanted it. It was my choice to take part or not.
• Naturopath and Nutrition consultations are FREE (obviously products they suggest are not).
• The size of the hospital was small and manageable and didn’t feel so clinical. It has a section that looked like a hotel that was warm and inviting and had a nice fireplace always going. It soothed me.

While CTCA is great, before I conclude this post, there is something that I think needs to be said and explained about their sales pitch that you will have so many radiation and innovative cancer treatment options.

The truth is that while they DO have a sort of chinese menu of 10 different machines for radiation and other different approaches to tackle cancer like Immunotherapy…..the important factor to know is that YOUR type of cancer and the typical cancer strategy used for it may not call for using any of these “new” or “Innovative” approaches.  In my case, Stage 3 rectal cancer has a set standard protocol. It is Radiation/chemo, then surgery, then chemo -OR- Radiation/Chemo, then more Chemo then surgery. THAT is pretty much it. You will NOT really be approached with Immunotherapy options, etc…and the type of radiation machine they will use is already set and standardized. While it is supposedly the most state of the art available for your cancer, YOU don’t have the ability to choose it.  I think their sales pitch is a bit misleading, like you will have a chinese menu that you can pick from.

It ain’t so. Enough said.

At the time of this blog post, I am done with my 5 1/2 weeks of radiation and chemo and am resting for 6 weeks….and  I am very happy with my choice to go with CTCA so far.

Hope this post helped someone who is considering talking to CTCA.

Below are a few pictures from the inside of their Philly location.