Hi ALL, We would like to introduce ourselves. My name is Ashley, and My father Eddie(who doesnt use the computer much) was just diagnosed with SCC of the tongue (base) and the 3 surrounding lymph-nodes Stage4. We are still looking for an oncologist, but my father is really wanting to stay away from CHemo, because of the stories he has heard. Looking into pencil-beam proton therapy vs regular IMRT? Does anyone have recommendations? Is there anyone out there with pros or cons of either? Thank you so much

Welcome, Ashley.

Only a handful of institutions offer Pencil Beam Proton Therapy or Intensity Modulated Proton Therapy, IMPT, which is an advanced form of protons, with MD Anderson, Mayo Clinic, that I know of off hand that offer it, out of small selection of centers, 20, that offer any proton therapy to begin with. Anyway, it's basically the same protons with pencil beam or not, but pencil pencil beam cuts down the set-up time, and changing of brass snubs, each location, and conforms to any tumor changes, and others.

My proton treatment, which was my 5th different radiation treatment, was only for several areas, took 30-45 minutes set-up time, a minute for the actual protons itself, which is silent btw, while IMRT took 17 minutes for 17 zaps, which you heard loud and clear, but IMRT can do just about what proton therapy does, and both are external beams. Without IMPT, it may take a while to treat several areas with regular proteins, and if already talking about 3 lymph nodes, and primary, that may factor in if it's the correct type of treatment initially.

The other thing is proton therapy is usually only approved fir certain head neck cancers like brain, base of skull, carotid artery or after prior radiation therapy failed, like IMRT, unless in a clinical trail, so chemo or targeted therapy may be required to participate. It's not cheap, although medicare paid for mine, others insurances as well, some maybe nit, but it's twice as expensive as IMRT. Mine was $7,157 a day, but even with that it can be costly if there are any daily co-pays. Some, if they still do, offer grants.

Protons are the most advanced forms of radiation, and there is there is no exit burn, unlike IMRT, due to the Bragg Peak, which usually results in hair loss in the nape of the neck in head and neck patients, as most of the radiation dosage is to the tumor itself, so the tumor, receives a more concentrated dose, and minimally to other nearby structures, and skin.

Here is the website for the National Association for Proton Therapy where you can find more information. There are a few discussions about protons if you look it up under the search function here, in addition too, the radiation and chemo therapy, in the treatment section page. I hope this helps.

http://www.proton-therapy.org/howit.htm

Welcome to OCF! Your father is lucky to have you helping him with his treatment decisions.

There are a few members who have done the proton rads instead of IMRT. Since our group is made up of patients/survivors and caregivers, none of us are qualified to give a recommendation. Paul is one of the few here who have undergone different types of rads.

The best advice I can give you is to find the very best medical care for your father and go with it. Studies have proven comprehensive cancer centers (CCC's) have the best results by using a team based approach. All the specialists are on the same page and make a joint treatment plan. Ask the facilities you check out if they use a team based approach with a tumor board. The patient is allowed to sit in on this meeting.

Best wishes with everything.

Thank you very much for your response and welcome I will definitely be looking into the team approach. Its just trying to find the right center first and foremost. I guess what I was wondering was if anyone could give me their side effect pros and cons from the tomo therapy or other treatment that they went with. We recently found out that he is not a candidate for Proton therapy, so now we are looking into "TomoTherapy" Has anyone on the forum gone through tomotherapy nd would wither yay or nay it?

A few people here had tomotherapy or helical tomotherapy, which is a form of CT guided IMRT in one machine that is delivered slice by slice instead of opposing fields, and reduces radiation exposure to normal tissue, and before each treatment, a 3D image is taken, so the tumor can be targeted accurately, adjust any changes, but I don't hear about it as much anymore with head and neck cancer, maybe more with other movable cancers like lungs, but there are discussions about tomotherapy, if you look under search. Hopefully someone with experience can help, but as mentioned, it's IMRT.

As far as cancer centers, you can check NCCN, and NCI associated member listings, and or U.S. News Report Best Hospitals for Cancer and ENT.

http://www.nccn.org/members/network.aspx

http://www.cancer.gov/research/nci-role/cancer-centers

http://health.usnews.com/best-hospitals/rankings

Good luck.

Louis Harrison MD is now at Moffitt in Tampa.
If you're anywhere near Tampa or want a second opinion, I would be in contact with him.
Rob

I second what Rob said. He was my radiation oncologist also, and I had IMRT, IORT, and Proton Therapy with him, and is an internationally recognized head and neck cancer expert, and leader in Brachytherapy.

Hi Ashley. My radiation was delivered on a Tomotherapy machine. I can't compare it to any other IMRT alternative because, well, you are only given one. Here at the University of Wisconsin Carbone Comprehensive Cancer Center it seems to be the treatment of choice. I say that because there was no discussion of alternatives for my radiation treatments; hence *I* had no choice.

As far as I can tell by reading others' posts here, my side effects were comparable to most of what I've read here. I think there is a lot of variability in how rads hit folks though, and that variability probably eclipses any noticeable difference. It was pretty rough for me, but I have come 6 months since treatments ended and have been clear since then.

This probably isn't a ton of help. But Tomotherapy was developed with the goal of more precise targeting and less incidental tissue damage. In my case I'm happy with the results.

Thank you so much for your all of the information. It was very helpful I have printed it out and will share it with my father. He has decided to go to the Provisions Proton therapy center in Knoxville, TN. I am so appreciative of everything that you took the time to write. Heres to many Many more year cancer free for all!

we are actually 30 minutes south of Moffitt, and have an appt scheduled with them. I dont know what doctor he is scheduled with but i will make a note to change it to Harrison. My father has been really focused and interested more in proton therapy because of the fewer and supposedly less intenseside effects. He is really concerned with needed a feeding tube, since the cancer is at the base of his tongue. But as he has always told us, dont pick one without researching the other, so after his appointment with the pencil beam proton therapy, we will be going to moffit. But ultimately the choice is his, and I want him to do what he is most comfortable doing.

We are just doing a consult but our fingers are crossed that insurance will cover the procedure. Thank you so much, again..

Ashley, Ive done a quick search on the US News Best hospitals. When finding a treatment center I would advise to go with the very best medical care you can get. Unfortunately, on my search the Provisions Proton Therapy Center was not listed at all on the list. Moffitt came up as #18 on the list of top US hospitals. In my opinion, when given a choice of treatment centers, it would be a good plan to take this into consideration. Ive added the link to my post in case you would like to check out any other facilities on that site.

US News Top Hospitals

A feeding tube is a tool to help the patient get thru a period of time where they may not be physically able to eat or drink enough to maintain their health. This happens to some patients when being treated with radiation or complex surgeries. I know its a horrible thought thinking of eating thru a tube in the stomach. Ive had my share of phobias and apprehensions about using one. Often patients feel like everything is out of their control and they have no say in what they want and need. Thats why when given a choice, often the patient will say "NO WAY!" as a chance to finally be able to get heard by their medical team. Having a tube for most is a temporary situation and can greatly aid the patient in keeping up with their daily minimums of taking in at least 2500 calories and 48-64 oz of water. Please pass this along so a decision is carefully weighed. Ive seen far too many patients refuse to get a feeding tube only to end up needing emergency surgery to get one as they cant maintain themselves for one reason or other in the middle of their treatments. Remember, its easier to have it and rarely use it than to desperately need one due to malnutrition and dehydration and have to wait over a week to get it placed. Plus on top of waiting when the patient needs it right away, they usually are feeling pretty bad due to going for so long on too few calories and hydration intake. No matter what the choice that is made, we will be here to help support you both.

Best wishes!

I had SSC on the base of my tongue and it only went to one node. I did 42 sessions of Tomotherapy with no surgery or radiation. The doctor used an "MC Anderson protocol" which was 18 days of 1xday and then 14 days of 2x day. I am 5 months post-treatment and according to my PET scan, cancer-free. I'm doing well.

You have some good information about the different options from people listed above. Check out my other post about my recommendation regarding a PEG tube. Short version...I STRONGLY recommend one for your dad. Good luck!!

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