Friday, March 2, 2012

To Proton or to Photon??? That is the Question

I have a big decision to make. I must choose a hero to fight for my life. These heroes are subatomic particles whose existence I could not have even fathomed as a kid. Particles so tiny that most microscopes can't squint to see them. Yet they will go to battle for me against my tumor, and hopefully save my life. That is my awesome news.... even though I have cancer, my oncologist says that he believes there is a CURE! And that cure is either a Proton or a Photon.

My cancer is a particularly nasty one, and laughs in the face of conventional radiation. It's very resistant to the kinds of treatment that people are more familiar with. That's why we are calling in the big guns. Neither treatment is without side effects, however. With either choice, permanent and total deafness will likely result to my right ear. I will also be very sick for a few weeks after therapy. But as the great Poison so aptly mused, "every rose has its thorn."

I got to meet my cancer doctor yesterday. He was an intelligent and kind individual. I do not think he was prepared for me as a patient, however. I began the meeting by asking him to prove to me that my tumor was actually a chondrosarcoma versus the more evil and malicious chordoma (these can and have been easily mistaken for one another- with disastrous outcomes). He satisfied me with enough evidence that chondrosarcoma was still my problem, and then we had a long discussion on the subatomic interactions of the proton versus a photon in ensuring the total death and destruction of tumor cells. He did not understand that this is the type of conversation that I find necessary before making a major decision involving my possible mortality. If it were up to me, the two of us would have gone out for a nice casual lunch and discussed such pleasantries over a tall glass of pink lemonade (or an icy peach Bellini), making for a much more conducive environment for contemplation of such subject matter.

Anyway. So the direction of my treatment path is a decision I must make alone. Proton or Photon? Who is going to pulverize my tumor into a mash of oblivion most efficiently and effectively?

Don't you want a Bellini after looking at all that now?

The two big options are:

 a) PROTON- a specialized form of radiation therapy which uses relatively low doses of radiation via proton interactions with the tumor cell over EIGHT weeks. Option "a" would require that I move to another city for two months and receive treatment daily.
There is more evidence that I have been able to find in my research that supports the proton therapy. It is most assuredly a good treatment and has been proven. It could CURE me!
Cost will be substantial. Inconvenience of moving to Boston, Houston, Jacksonville. Two months away from immediate family. More disruption to my already chaotic little life. Most likely will cause total deafness to my right ear.

b) PHOTON- these little guys are INTENSE. What took my proton friends eight weeks to accomplish could be done in just one radio-surgical procedure with these guys. It used to be unsafe to use these in past cases like mine, because they would not only fry the tumor, but my brain stem and temporal lobe of the brain, as well. (As if I could spare any more neurons). However, there is new technology available which allows these bad-asses to keep their beat-down limited to just the tumor area within 1 mm. The Radiation/Oncology center at UAB is privy to a brand-new technology that is the ONLY ONE OF ITS KIND IN THE WORLD that would allow me to pursue this treatment option.
Cancer doc believes he can achieve same result (CURE!!!!!!!) with this one-time surgery as he could with the proton therapy. In Birmingham. Less disruption to my "routine." Get better faster.
Hasn't been used for very long. Not as much research to prove that it is "just as good" as proton therapy. Total deafness to right ear is likely as a result.

I am really thinking and praying about this. I have read at least 12 studies about treatments of my tumor, and am considering each carefully. Cost and time are sacrifices I am readily willing to make in order to live a long, healthy life. I am inclined toward the photon option right now, but need a little longer to weigh the pros and cons. This could be the biggest decision I've ever made in my life.

In a few weeks, I will be getting a PET scan of my body just to make sure that there are no sites of metastasis or any secondary cancer areas. My oncologist believes that there is a less than 5% chance of there being any, but I would like to be sure. After that is cleared, I should be ready to get started on killing this tumor.

I will see my neurosurgeon and ear-nose-throat surgeon on March 13th. The PET scan should hopefully be done on either March 12th or 14th. I will try to keep everyone posted!

If any of the readers have had any experience with these types of radiation, could you please leave me a message or comment about it? I am new to this world and any outside perspective is super-welcome. Any thoughts or comments are fine! Please pray for me that my decision will be guided in the correct way and for the best outcome.

 I think I may have a Bellini now. :)


  1. Sierra Darling,
    So sorry you are going through this. If one of your options for the procedure is Baltimore, DC or Philly you are more than welome to come and stay with us. We live in Baltimore and have 3 extra bedrooms with private baths that you are more than welcome to live in. Plus you'd have a RN in house to help out. You just let me know.
    LOve you and you will be in my prayers.
    KAthy Neno

  2. Tough choice. My folks found a house they like in Houston so if you do decide to go there then you could stay with them.

    Has your doc mentioned doing both? I was googling around and found a study regarding both options bringing tried. I can't seem to post the link when on my iPad,

  3. I can't get the link to post but I found it on pubmed and it involves base of skull rumors. Maybe from intl j radiology? Also there's interesting research on dogs with this form of cancer. Something about using the class of drugs that Boniva is in.

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