I had IMRT 35 times from Jan 20th-March 15h of this year & the docs thought my cancer was gone. However, I just had a CT and something showed up. They think it's back or may never have left. Supposedly, it's an inch on my tongue going back to the base. So, I have to have surgery which they said will affect my speech and swallowing dramatically. I also have to have radiaiton AGAIN. Which they said is going to completely dry my mouth out of any remaining saliva, etc. It all sounds horrible.
Can someone help me? Has anyone had it twice? What about surgery going from the middle of my tongue back to the base? Doesn't cross midline. I am so scared. I'm only 31 w a 2 year old daughter. I don't know why this is happening. Please someone help me!

Hi Bailey,
I can only imagine your fear right now but don't let it get the best of you. You need to make clear decisions right now. Are you being treated at a CCC? Do you have a team of doctors? Tell us that information first. You may need a second opinion.
As far as having radition twice, I don't know of anyone that has. I DO know that there are many survivors on here that have had the type of surgery you are facing and are doing fantastic.
I think right now your best defense is to make sure you are in the hands of people that KNOW the best treatment for you and have the skills to perform that treatment.
Minnie

Hello Bailey.

I can not comment as I have not had rad yet. I am so sorry to hear of the recurrance. Why this disease attacks young people is an unanswerable question.

I just sent you a PM (private message) with some info in it as you have no E-mail listed.

I wanted to E-mail a thread to you. You can see it by going to the "General Board" forum. There is a topic titled "How to get the most out of this forum". It has valuable info you can use.

Keep posting and we will help you.

I'll be praying for you as you go thru your journey. Best Wishes, Petey

Bailey,

I went to a CCC, Moffitt, in Tampa, Fl. I was told my MO that I couldn't have rad again because there would be to much damage to the blood vessels the 2nd time around. Make sure you ask them about the risks associated with the 2nd rad Tx. Not saying I wouldn't opt for it anyway but I would definately ask more questions and seek other opinions before I mad up my mind.

Bailey, five years ago I had 37 IMRT sessions of 45 minutes each. When I was finished, I commented to the radiation oncologist that it was a good thing they gave me a whole boatload of rad because it was my understanding I could not have any more.

His comment was "that is not necessarily true" which I found strange, but did not follow up on, as I was very happy to see the last of that place.

I just want yu to know that option may not be closed to you.

Bailey: Alan had a lot of radiation with his first bout of cancer. They said he can't hve anymore. Today the rediation is much more focused and controled. Perhaps this is why they can do a second set.
Mar

Actually clinical trials were started some time ago (in Europe) about receiving RT more than once and surprisingly the collateral damage was not as bad as they expected.

IMRT, because of it's highly targeted nature, can be repeated if it is not exactly at the same site.

PBT may be the treatment of choice for recurrence since it has little to no collateral damage.

Gary-

thanks forthat info. I don't know what PBT is. Please explain. How do you know this info??

Bailey,

Although I did not have radiation, I was treated at Fox Chase Cancer Center and during conversations with some people on staff there, I was told that there are many patients that get radiation more than once.

Good luck and I will be praying for you to have a successful outcome with your treatment.

Jerry

While my husband was in PMH lodge he told me that some of the patients living there were receiving radiation for the second time. Originally one patient he was talking to stated he received radiation in 2005 and now 2007 he is receiving it again. Food for thought. I am not aware of the details. Certainly gives us hope. Carol Ann...

References for PBT

http://clincancerres.aacrjournals.org/cgi/content/full/9/10/3571

http://www.aetna.com/cpb/medical/data/200_299/0270.html
http://www.osti.gov/energycitations/servlets/purl/861137-yOhQ8a/861137.PDF

http://www.hno-onkologie.de/uploads/media/Abstract_Book_and_Discussion_Slides.pdf

http://www.mdanderson.org/care_centers/radiationonco/ptc/dIndex.cfm?