Hello all, was wondering if anyone out there has undergone radiation twice?

Here's my situation: I was treated with IMRT radiation in December and January as a follow-up to my tongue surgery. At that time, I had not had a neck dissection and a PET/CT fusion scan taken right before I started radiation showed no "suspicious" activity anywhere, including where they had just done the tongue surgery 5 weeks earlier (ahh, the good ol days)...

Anyway, I did have a recurrence in a lymph node that fell right below the radiation field (i.e. in an area that didn't get blasted by the IMRT). I had a neck dissection about 10 days ago to take care of that, and after I heal up from that they are talking about doing general beam radiation in the lower neck, upper chest areas...

There would be some overlap, which makes me curious why they wouldn't do IMRT again to avoid that. But they said IMRT wouldn't be necessary because no key structures would need to be spared this time around (esophogus, mouth, saliva glands, etc). I'm assuming that it won't be quite as tough as the first time since they won't be shooting my mouth but who knows?

They said the biggest problems could be that parts of my caratoid artery get a second dose (could be problems 10-25 years down the line, but if I'm dealing with that then it means I beat the cancer!)... They also said any overlap areas could be stiff and skin could have some significant scarring...

Anyway, just curious if anyone has been down this road before (i.e. repeat radiation)...

It makes me wonder why they didn't radiate this part of my neck to begin with but I guess that's a moot point now... And to think, at one point I was 50-50 on even needing radiation according to the docs and typical protocol... now I may be among those who get to use their masks twice!! acckk!!

(on an unrelated note, I went back to work today for the first time since my neck dissection. It felt good to be Eric the sports editor for awhile rather than Eric the cancer patient)...

Hi Eric,
that is odd that they didn't irradiate adjoining lymph nodes while they were at it. They did to me and I didn't have any lymph node involvement (being a T3N0M0). The rad onc said she was targeting a whole bunch of places (she was the best - rated top IMRT radiation oncologist in the US). You sure sound like a good candidate for PBT (Proton Beam Therapy). have you investigated that?

Congratulations on being back at work.

I haven't investigated PBT yet. Any good sources that you can point me to on this?

My oncologist told me after he heard of my recurrence that he called a lot of his buddies about my case. Would they or would they not have radiated that area? They came back about 50-50. Interesting, but what can I say now? Oops?

I guess it's more evidence for me at this point to recommend folks in the future going to a comprehensive cancer center. They should have a lot more body of knowledge than others since they see and treat so many more patients...

PBT is only available at a few places in the US at the moment. The closest one to you is Loma Linda in So. California. MD Anderson has committed over 200 million dollars to building a PBT treatment center.

Here's a link to Loma Linda: http://www.llu.edu/proton

Erik,

I have been hearing the PBT commercial several times a day on the radio (for Loma Linda). It always ends with call 1-800-PROTONS.

Glad to see you back at work and I still swear I saw you towards the last week of NCAA hoops on the KU Jayhawks boards.

Ed

Hi Eric,

Glad you are able to return to work. Hopefully it will take your mind off cancer 24/7. I am so sick of this diaease dominating my life.

I to had IMTR and have a reoccurance in the surgical bed. In hindsight I would have traveled to a major cancer center. Gary was right-on when he suggests attacking this with the best doctors
avaiable. The best chance to cure it is the first time!
Hopefully this go around will spare you some of the negative side effects of the radiation.

Best wishes, Dan

Hi Eric

Did IMRT rad twice, but each time on different sides, first left side, then right side. Are they going to do concurrent Chemo again? Only reason I ask is I had Cisplatin the first time, did ok through 6 treatments, one a week. Second time around got through 3 and had to quit becaue of side effects to hearing, apparently the buildup of Cisplatin side effects was cumlulative. Rad part wasn't any big deal second time around, little tired, had a bit of a sore throat because some of the rad hit the trachea, and there's some lingering effects of that, voice comes and goes. Can't sing worth squat anymore, which is a blessing for those listening because I used to sing terrible off key.

Good luck
bob

Hi, I ask my doctor why I didn't have imrt radation and he said their was a very good chance my cancer would come back with it because my cancer was so aggressive. You just have to trust your doctors and go with your heart or gut.
Mary Lee

This is one of the paradoxes of radiation therapy. It's all about yet another risk/benefit decision one has to make. IMRT offers much less healthy tissue damage, possibility of salivary gland preservation and many other "quality of life" benefits.

XRT is more of a shotgun approach and for some it is their best shot, especially if your cancer is poorly differentiated or spread.

Even though my tumor was a T3N0M0, they still targeted many other areas like lymph nodes, etc. I did go to a major comprehensive cancer center, had the top rated IMRT RO in the country. Her experience, I am certain played a huge role in the outcome. IMRT has been in common use for only about 6 years and many regional treatment centers are just now upgrading to it. This means that many RO's are going to have a learning curve on what is successful and what isn't. Do you want to be part of that learning curve? That is why I always recommend the best and most experienced doctors and institutions you can get to.

I instinctively don't trust doctors. I do my homework, seek the experience of others, am my own advocate, ask lots of questions, pray for wisdom - then I go with my intuition.