I talked to the radiation/proton doc today & it turns out they wish they had imrt capability. They use standard xrt radiation in combination with proton therapy. So, I'm stuck with a dilemma. What do I do? I know it's my decision, but which fork in the road do I take? There are pro's & con's to both roads. The proton therapy has pinpoint accuracy & eliminates at least in my case the need for surgery, however, has to be followed up w/standard xrt radiation & there goes the neighborhood, meaning the parotid glands & anything else in the way. The other option is I go through with surgery; jaw bone split down the center & the loss of both bottom front teeth, removal of right base of tongue & section of throat below that, rebuilt with left forearm tissue & artery, skin graft from left thigh to repair left arm, day after tomorrow & follow up with 6 weeks of IMRT radiation 10 weeks later & possibly still lose parotids. I'm really not complaining, just venting about the things I'm wrestling with. Any comments or suggestions? I live near Seattle & the surgery meal deal is in Seattle. The proton meal deal is in southern California & would most certainly add a whole lot of complications just due to geographics.

Hi Erik,

I had my jaw split down the middle and over to just below my right ear. I didn't lose any teeth. My ENT told me normally I would have lost one of the bottom middle teeth. He told me he sawed the jawbone open below my teeth and used a chisel to break the jaw between my lower teeth. Everything fit back together just like a puzzle. My lower teeth were sensitive for a couple of months but it is getting better each month.

As far as losing your saliva glands It may not be as bad as you think. I had IMRT and I still have all my saliva.
The thing to remember is we all react differentely
to the same treatment. My tumor was on the right tonsil and surrounding tissue. A stage 4NOMO.

As Brian often says "You only get one chance to get it right" Whatever decision you make, Go full bore. Don't second guess your decision. You will have enough hurdles to pass without adding to your stress level.
As Rosie often say's "Rainbows & Hugs"

Your Friend, Dan Bogan

Hi Erik,
I had my lower left jaw removed, all the way around to the other side of my chin. It was replaced with the small bone from my lower left leg. I also had a neck disection on the left side. I had my chin split (obviously) and lost all the teeth on my lower left side along with the lower middle teeth. I have 6 teeth left on my right lower side. Guess my point is that I had some pretty radical surgery. When they told me what they were going to do I couldn't even fathom it. The most trouble I had was with my leg to be honest, I had very little pain in my face. Today, I look like myself other then my "waddle" from the lymph fluid that hasn't drained. Radiation knocked me down for awhile but almost 8 months out from it I am eating well and have gained back ALL my weight PLUS two extra pounds. Guess I can lay off the Krispy Kreme's now, darn it.
If I had all this to do over again, knowing what I know now, I would not change a thing to my treatment. It appears that surgery and radiation and/or chemo offers us all the best chance of survival.
Hope my thoughts help.
Minnie

Erik,
I have been exhaustively searching all known proton therapy centers and there none close to you. Where will you be receiving your treatment?

If a doctor apologized to me for not having a particular treatment available - I would be running for the fire exit. What I hear them telling you is that you are going to receive a treatment protocol that is 10-20 years old.

I haven't been able to find any references for the use of PBT in conjunction with XRT.

Someone else mentioned the same therapy (proton - other than PBT)on the site and I have not yet found anything other than "Proton Beam Therapy". Are you sure they said "proton" and not "photon" - there is a huge difference.

Geographics shouldn't be a consideration. MD Anderson and I am sure LLUMC have facilities to accomodate you and oftentimes families as well. They know that most patients are not from their geographic location.

Whatever path you take, you want the one that gives you, first and foremost, your best chance for survival. Secondary to that has to be quality of life issues.

Gary,

I ran across a reference in a page from some searching I did last night. The regular (not IMPT) PRoton beam is so narrow that XRT is done together because it gets the larger field the PBT misses. It was in a page provided by LLUMC. PBT-very good at specific targets not so good at wide field. XRT-good for wide field not so good for specific targets.

As for the Proton VS Photon yes there is a big difference. I realized that my three year old memory was cloudy. All I know is that they changed the treatment in some way and I have not gotten the info on what that was. It possibly was Gamma or electron beam.

Bottom line XRT has been around for a long time (like 50-60 years)with a pretty good reputation for improving long term survival. Also has some sucky side effects. IMRT still pretty new with excellent near term results. IMPT still cutting edge.

Erik,
If you are hearing that you could expect the same longterm results without surgery then I would have to say that is worth strong consideration. If loosing salivia is the price for not having the surgery then it might be a fair trade.

As I understand it IMPT isn't even availible in this country, Japan & Germany maybe. This is all cutting edge stuff & I can't seem to get straight answers anywhere. My 1st reaction was to run when the socalled cutting edge proton facility said they didn't have IMRT & wished they did. I think my second reaction is going to be the same. My hometown ENT, whom I've known for a number of years, happens to be my friend/customer. I've discussed the pro's & con's w/him, he did the original biopsy, & reffered me out, & he definetely believes in the folks at Virginia Mason MC I think I'm going to go w/his original refferal to Virginia Mason MC in Seattle. OOH! That sounds so good, the chisel to the jaw!

Thanks Mark,
I looked at the LLUMC site several times, including their definitions and terms page and must have missed it. It is strange that there isn't more information about it. It's going to be a mission for me now. I am not doubting it's existence (or efficacy) just that it's strange that there isn't much information about it on the net (I guess the old "information superhighway" has a few chuckholes in it).

Erik,
I appears that at least 2 sites in the US have it. Sometimes they refer to "3D conformal" which is very similar if not the same as IM(RT/PT). LLUMC, Massachusetts General Hospital (Harvard)and The Midwest Proton Radiotherapy Institute have it for sure. Here is a link to all of the facilities worldwide and their status: http://medrad.nac.ac.za/pfacil.htm
Please note that the lower mEV facilities are usually specialized for occular diseases.

One of the most difficult things for me early on was all of the major decisions one has to make in such a short time. I had to enlighten and lobby my doctors for IMRT (and one of them, who was unaware of the technology/benefits and subsequently recommended it, went the the very medical school where IMRT was pioneered in 1995).

You have to follow your heart and your intuition. I will pray for wisdom for you and your doctors.

Hi Gary and Erik,

Speed bumps indeed! I tried to find the same web page to give you and I can't find the exact spot again. It seems search engines come back with slightly different results if you reverse the words I remember using "radiation therapy proton" in Google. The LLUMC glossary makes a reference under Glossary of radiation and proton therapy


I did find another informative page at: web page

Hope this is helpful