Author Topic: Radiation less than one year after TL surgery - photon or proton radiation?  (Read 426 times)

tam

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After being seen by three ENT's over eight years I finally got the AN diagnosis and had TL surgery in June 2020, but couldn't resect 100% and had to leave a "sliver" on my facial nerve. (thanks to the delayed diagnosis, giving the tumor time to grow and attach)  Last week, after my almost one-year post-op MRI, my tumor is now 1.3 cm x 0.5 cm. I was referred to RadOnc for consultation. Recommended fractionated photon therapy - 5 treatments in 5 days.

My concern is obviously having radiation damage the facial nerve. The last thing I want is to do this and have numbness or paralysis afterward. How did you decide what to do? And what do you do if there are facial nerve/trigeminal nerve issues after surgery? I can't imagine dealing with that for the rest of my life.

Worse, the RadOnc dr experience was bad. I went in for a consult on Tuesday, where they scared me into signing the consent form before I left, then they tell me they have already 'reserved' my mask appointment for the following afternoon. ("reserved" as if this is some super exclusive spa I'm getting into!) it took them three attempts to make my mask (don't even get me started on that experience), and before I left that appointment they handed me a sheet of paper with my treatment schedule (which was to begin the following week (as in two days from today). Not once did anyone ask me for my input or availability or consider that I might like to have a choice in the matter. I felt like I was on a conveyer belt, and they got a bonus if I signed the consent form before I left the office that day. They took every choice away from me, made them for me and that is NOT OK. So I already have a bad feeling about this, and cannot seem to get past it.

I'm trying for a second and third opinion, but I feel pressured b/c of the time it takes to figure all of that out. The current dr doesn't want to delay treatment beyond the four-week mark since my last MRI b/c of the chance that the tumor has changed/grown. I get that, but I also get that I need to be certain I'm doing what is right for me, and it might take me to week 5 or 6 to figure that out.

If you read this far and have any advice, I'd love to hear it. Thanks.



gbly

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tam,
Sorry to hear you have to deal with this again.  I have no hesitation in recommending OHSU Dr. Jaboin for proton therapy.  He is amazing and listens to your concerns and answers your questions. 
I will say that my facial nerve did get stretched, but I think it was the fast swelling of the tumor responding to the radiaition.  It is slowly coming back, so good there.

So I did the research and the advantage of the Proton is that the surrounding tissues etc are not as impacted by the radiation over the previous generation of radiation. 

Cancer.gov
https://www.cancer.gov/news-events/cancer-currents-blog/2020/proton-therapy-safety-versus-traditional-radiation

John Hopkins
https://www.hopkinsmedicine.org/news/articles/photons-and-protons

You Tube video - I watched this one many times
https://www.youtube.com/watch?v=G8m7RSVuye8

From all of them, the main take away is that the proton ray is more precise and stops at the point of impact (tumor).  It doesn't go through the tumor and damage other tissues around.  Dr. Jaboin stated that Proton therapy is 96% successful, I love those odds!

I think it is worth the conversation, he does do video, and see what his thoughts are on the radiation and its impact on the nerve.
Good luck and keep us posted on what you decide.

Left ear AN
.4 cm - April 2019
.7 cm - Aug 2019
1.7 cm AN - Aug 2020
Sept 2020 start 3 rounds of Proton Therapy
Total dose of 2100 cGy (centigray) in three separate doses of 700 cGy each.

gbly

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Tam,
Just checking in to see if you were able to get to a decision on your way forward?  Never an easy decision, but just want to let you know we are all behind you.
gbly

 


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