Friday, December 4, 2009

is it weird to be excited after meeting with my radiation oncologist?

I had a good meeting today with my oncologist, despite the fact that none of my records got sent to him and he had no warning that I had had a recurrence, even though I called weeks ago to let them know for this appointment. :\

My RO is an associate professor at the U of A school of medicine, in addition to being associated with the comprehensive cancer center here in Tucson, the only CCC in all of Arizona. His research is in Head and Neck cancers and in recent years has been focusing on younger patients. He said he had sort of expected this recurrence in me, which is why he had had me stopping by for checkups every few months even though he had not recommended radiation the first time around. He says these cancers in young people tend to be very aggressive and that is why. He went over a lot of the side effects of radiation, the basic areas that will be treated, and all the appointments I would need to have done before I could even begin.... So, within the next week I will be seeing:
1. The Dentist - I need to get his ok, before I can even schedule treatment. Apparently, any dental work that requires teeth removal, ever, after radiation treatment could cause my jaw to shatter. The dentist has to do any potential dental work before I begin radiation.
2. An MRI machine - my RO wants to image my head and neck to see if he can find any source for this recurrence. It is odd that it moved sides, so he's looking for a possible point of origin. The PET/CTs I've had before only show the cancer if it's larger than 7mm. The MRI should be able to show smaller areas.
3. My ENT - I have to have a baseline hearing test, as radiation treatment possibly could damage my inner ear.
4. A bottle of barium - I have to have a baseline swallowing test, by drinking barium in front of an xray screen (cool!).
5. A Medical Oncologist - My RO strongly recommends chemo in conjunction with the radiation treatment, as in the studies he's done with my type of cancer, the chemo can increase my chance of 5-year survival by 15-20%!

After those five appointments, I will return to see my RO. I will then begin creating a mask and doing the simulation to set up my treatment plan. They will be radiating both sides using Helical tomotherapy, a new, advanced form of IMRT, only available at a handful of hospitals. It is very good at targeting specific areas and avoiding healthy tissue. They will be specifically avoiding my larynx and my right cheek (in order to save one of my major salivary glands).

The part of my appointment that made me the most excited, though, is that Dr. Nguyen has been researching the most effective diet for helping people to maintain nutrition during treatment and avoid needing a PEG (feeding tube). Many cases I've read about have the PEG installed before treatment even begins, since once you actually need it, it's too late to have it put in effectively. My RO said this was going to be like preparing for a marathon, so for the next week or two before I start treatment, and then for as long into treatment as I can, I have a list of about 2000 calories worth of nutritional supplements to add to my normal diet. I can't imagine losing that much weight during treatment, that I need to try to put on that much.... but I will listen to the doctor. I soooooooooo want to avoid getting a PEG. The whole idea of it just sounds miserable. For some reason, I understand the effects of radiation and chemotherpy, yet the part I'm dreading the most is the PEG. Ha! I'm very glad to have a good chance at avoiding one.

It's getting late, so I supose I should get going to bed.

I'm actually in a good mood tonight. I think Dr. Nguyen is just what I needed to "Nguyen" this fight against cancer, once and for all. :)

2 comments:

  1. Dearest Jennifer,
    Words escape me. Please know that we love you and are praying for you. You are a dear soul and I can't help but believe that you will get the better of this and come out on top. Your honesty in your writing is courageous. Thank you for letting us take part in your journey.
    Hugs,
    Mrs. J and Crew
    P.S. If you think a Manny's pizza would help let me know and somehow I'll figure out how to get you one.

    ReplyDelete
  2. Hey,
    I just wanted to check in to let you know I now have an account and can comment on your posts. Thanks for keeping me informed (via phone and via blog). Your old mom appreciates it.
    Love you, kiddo!
    Mom

    ReplyDelete