Last Minute Detour! Surgery OUT. Proton Beam Radiation IN.

Chordoma, a very rare bone cancer, is a difficult beast to treat. It doesn't respond to chemotherapy, so that was never an option for me, nor was radiation since the location of the tumor (my sacrum) is too close to prime real estate (colon, nerve roots, bladder, rectum, ovaries, etc.) So, the only option I was ever given by my oncologists was surgery. "You have to have surgery. It's the only way", as my oncologist told me firmly the day I was diagnosed.

My initial reaction was a feeling that my oncologist was wrong. I had heard plenty about success with alternative or holistic treatments and I was a big believer. 

However, after the tumor had grown to be as big as a grapefruit, major fear set in and, as I mentioned in my previous post, I felt like I had no other options, especially with so much pain. I just wanted to get it out of me. But then, with all the delays in surgery, and the fact that it was taking so damn long for UCLA surgeons to put a date on the calendar, I started second-guessing the surgery option, and that ultimately led me to seeking treatments in Mexico. 

Even at the time of going down to Mexico, I figured that I was probably still going to have surgery. But a funny thing happened in Mexico, as funny things do tend to happen in Mexico. About one week into the treatments, the head oncologist, Dr. Contreras  asked to see me. With my IV bag still full of Vitamin C, I was escorted up to his fancy office on the 5th floor. A large corporate board meeting looking office. This was the second time I had sat across from him. Our first meeting, two days after my arrival, he had very few words for me. He kept shaking his head. My case was complicated to them and difficult to advise on. It wasn't so much that they had never had a patient with Chordoma, It had more to do with the fact that I had a very large and aggressive mass impinging on nerves, and an upcoming surgery that they were afraid to suggest delaying as they admitted that some cancers are stubborn and not all respond to their treatment. Yet I could see that he also had a hard time suggesting that I go through with the surgery. Not just any surgery. This surgery. 

So what exactly does this surgery involve? Let me spill the beans. It involves amputating my sacrum, severing most of my nerve roots and thus, total incontinence, cutting off my ability to have normal bowel and bladder function, with leg weakness and permanent neuropathy, oh and not to mention, possibly debilitating pain for the rest of life due to the fact that "sometimes nerves hold a grudge". Plus, the real possibility of a colostomy (google it. I had to. It's not pretty.), wound infection, sacral fractures, blood transfusion, etc. Later with the specialist at UCLA, there was the hardware. Rods and screws in my body for pelvic stability that would make it difficult for me to surf again. And on Aug. 20th, I learned what the real need for the plastic surgeon was. He would be there to take one of the two large core abdominal muscles that run down the front, detach it from my abdomen, and flip it through to the back side so that there would be enough flesh between the hardware and the skin. And the real kicker is that even after all that surgical nonsense, there's still a 40% chance of it coming back. 

So here, in Tijuana, Mexico, during my second week there, Dr. Contreras (who is also a surgeon and an oncologist) looks at me and says, "Have you considered proton beam therapy?"And I had. It is a radiation treatment that is usually used after the gruesome surgery to make sure "they got it all". It's used only for certain types of cancer (think brain cancer) in which traditional radiation would be too risky. Proton beam radiation is more targeted and does not exit the tumor like traditional photon radiation.

When I visited UCSD radiology oncology to inquire about it as a treatment option instead of surgery, the radiologist deterred me stating that surgery, and then proton beam therapy was my best bet for long-term survival according to all the studies. Well, the few studies they have. His reasoning: There haven't been any long-term studies on using proton beam radiation therapy instead of surgery to treat this, nothing beyond 5 years, so he couldn't recommend it for me. Plus, you have to use very high doses of proton radiation in order to treat chordomas with proton beam therapy only, which makes it very difficult for you to have surgery if it comes back. He also stated that proton beam therapy is better for more elder patients who are in their 70s and 80s and would have a harder time recovering from the aggressive surgery. I asked at UCLA and they also told me that it's almost impossible to find a surgeon that would operate on a patient after having only proton beam therapy (if it came back) because the would won't heal. They've tried, and it just doesn't heal. 

Dr. Contreras, however, told me that their treatment, the immunotherapy, or more specifically, the dendritic cell vaccine, coupled with radiation actually works well together. They actually work synergistically. Wow. I had no idea. Afterwards, I became busy researching whether it was true, reading a ton of scholarly articles trying to make sense of them. Despite not understanding all the medical jargon, the gist for all the articles that I read was the same. Radiotherapy and immunotherapy work together in tandem. I asked two other doctors who agreed and did their best to explain to me how it works, drawing pictures and visual representations of T-cells, apoptosis and antigens and all that. Then, during the last week at Oasis of Hope, Dr. Contreras and Dr. Cessenia, the 2 head doctors met with me for a final review before I was to go home. Dr. Contreras looked me straight in the eye and said, "If you were my daughter, this is what I would recommend". ("This" meaning the proton beam therapy and their immunotherapy treatments together instead of surgery.) 

A few days prior to this, I had finally gotten that call that I had been waiting and waiting and waiting for. My surgery date. August 31st, about one week away. Wow. But I still had to make sure of a few things before I canceled it. First, that my insurance would completely cover it. Second, that the radiologist at UCSD would still treat me even though he recommended surgery. And third, that I was still 100% sure that this is what I wanted to do. The clock is ticking. Decisions are rough. 

Long story short, affirmative to all three, but the radiologist wanted to do an MRI and a CT scan to get an assessment of the treatment and make sure there weren't any red flags in which he would want me to reconsider surgery instead of radiation. We made the appointments for that on Friday, Aug. 24th, one week before my surgery date, and he told me he'd get back to me by Monday on whether everything was a green light for the proton beam radiation. So I was to hold off on cancelling my surgery until then. 

Monday comes and he gives me the green light. That evening, 5 days before I was due to have surgery, I made the monumental decision. I cancelled it. Wow. Even now, a week later, I'm still haunted by the decision. It's hard not to go there and think, what if, what if? What if I would have had a better result? What if I made the wrong decision? I may never know.

80-90% of sacral chordoma patients choose the surgery. Most Chordoma experts would disagree with proton beam radiation in place of surgery, reasoning that given my age, my best odds for long-term survival is to have the surgery, since the radiation only approach has a higher re-occurence rate, though it's not that much higher. Yet, they don't say anything about the quality of life. I'm rolling the dice and choosing quality of life over quantity. I feel as if the surgeons, in order to get negative margins, would cut off my left leg and re-position my right leg in the middle and declare proudly, "We got it all!" without saying anything about the quality of life. I don't know the future, but I don't expect this to come back. Plus, with the immunotherapy treatments I had in Mexico, I'm hoping for good results.

I'm done reading the research and racking my brain over statistics involving my supposed fate. Statistics don't apply to me. I'm no doubt younger and healthier than the average person included in statistics of chordoma patients. Most are in their 50's or 60's when diagnosed. At the end of the day, I have to go with my gut. Plus, it's strange isn't it? The fact that my surgery kept getting delayed opened up a window of opportunity for the Mexico treatment ,which led me to reconsider proton beam and combine it with the immunotherapy treatment in Mexico. Plus, I still think it's significant that a random woman at Cafe Gratitude approached me to tell me her story about being cured of her cancer at the Mexican hospital, Oasis of Hope. And then I found out her name was Crystal! Was that not a sign? Or was it?

As of now, I haven't started my proton beam therapy treatments, but I will be starting them this week! I pray that everything goes well. In a separate post, I'll go into more detail about that treatment.

Please leave me a comment! Comments make me happy!! :)