Hello, my name is John Andrews and I am cancer patient. I was recently diagnosed with cancer of the tongue. My tumor is located at the base of the tongue. I have been recommended to this site by Dr Wilck, a cancer survivor. Dr Wilck was my dentist.

I'm not sure what to do first on this site, but I would like to thank all involved with this forum. It is a great opportunity to share experiences and to help each other get through this difficult time of our lives.
As I try to determine the best course of treatment, I have run across Proton Therapy as an option to radiation. Can anyone share experiences or opinions to help me in my treatment?

Thanks,

John

Hi John, welcome to OCF. Im glad you have joined this wonderful forum. Dr Wilck (Jerry) is a great person and Im proud to say is my friend. Im not that far to the North of you (Allentown, PA). You will find tons of info to help you and we will help guide you. Most important is to find a cancer center, there are several top rated places in your area. Fox Chase, HUP and in Baltimore is Johns Hopkins. Sorry but Im not familiar with the proton therapy. All I know about are the conventional methods like surgery and radiation with chemo. Thats what I went thru. Best of luck with everything.

John, welcome to our little band. Sorry you need to be here but glad you found the site and hope you explore it as you have time. There's tons of info here, and more every day. I too have no experience with Proton Beam, but Christine's advice to seek out one of those places is excellent.

Please keep us advised, and courage!

David 2

Hello and welcome to OCF John,
How lucky for you to have had Dr Jerry Wilck as a dentist and now he has pointed you in the right direction by recommending this forum.
Jerry is much loved here and he like many others can help with advice and encouragement on this journey you are about to undertake.
You will find him here if you search for wilckdds.
Good luck,
Gabriele

[quote=john andrews]I'm not sure what to do first on this site, but I would like to thank all involved with this forum. [/quote]

John,

Welcome. You have had great advice from one of our best guys! So glad you joined us. What to do first??? Read, Read, Read...you will learn so much just by taking time to read thru as much of the forums as you can stand. You will begin to see how everyone responds to their diagnosis and treatment and pretty soon, you will be helping someone else here on the boards. Kind of of like, "Pay it forward!"

We all wish you well in the coming weeks...it will be no cakewalk but stay here with us and we will help you thru it.

Deb

John

Look to the middle right side of your screen to see the Search box on this forum. Type in "Proton Therapy" (be sure to use the quotation marks). All the prior posts here on proton therapy pop up. It looks like the majority were all in 2008 when proton therapy was not standard for head and neck cancer.
I did a Google search also that shows some enthusiastic web sites for proton therapy indicating it was far superior to IMRT however one site listed pros and cons and I was biased in its favor since it actually overemphasizes eating difficulties in restaurants
[quote]Many of these patients are unable to eat in a restaurant since they may require their food to be pureed or specially prepared for them to be able to eat. It is these sorts of poor quality of life outcomes that are very inadequately measured in current cancer statistics where the only measure of outcome is survival. Patients may be alive, but at considerable personal cost. This complication, xerostomia, is the sort of complication that significant with standard X-ray and IMRT treatment. [/quote] Makes me feel less unlucky. Proton therapy for H&N cancer
Welcome.
charm

John,
I took a fairly good look at proton therapy about a year and a half ago. I had some top folks in the field give me advice. They all said that it was very experimental in head and neck at that time and the numbers were not in in great enough volume to have a great degree of confidence in an outcome that would exceed IMRT. The central issue revolved around targeting and field size.
I really had to think about it before deciding to go for the tried and true approach of IMRT. I have very good saliva use at this time and my quality of life is good (not great, but I survived cancer). I eat fairly regular foods now and even eat a lot of bread (some here have trouble with bread and dry foods). I don�t eat crackers unless they have already been in my soup for a bit.

Having said that, I was almost there with the proton therapy back 18 months ago. I think it�s a coin flip on your part. Get the best advice, and latest data you can and make the decision that is best for you. Be your own best patient advocate and your treatment will be much less traumatic as the decisions being made will be your own.

Hi John, I also am new to the site. Welcome, I to am looking for support and information about OC. Reading the forum has given me a way to express my feelings and gather information to the many questions that will come. I hope you find this to to be helpful. Keep us updated!- Ceazar

We have our very own dog whisperer here!! Cool - welcome Caezar. Oops...not Cesar....got muddled there - blame it on radiation. Welcome to both you and John. Read and ask away. Keep in mind this site is great for the information - reading and searching - and for SUPPORT. These people on this site share your fears and concerns - feel free to express them - we are all here for you.

Donna

John-

Welcome to the site!

I finished IMRT almost two weeks ago. I had asked about proton therapy myself as I was hopeful I could do that form of radiation. The radiation oncologist explained to me that proton therapy is able to target a more specific area, and therefore is useful if you are trying to specifically avoid hitting some crucial structure. For example, if you have a tumor right against the spinal cord with proton therapy you can hit the tumor without causing any damage to the spinal cord. With IMRT, on the other hand, even though there is a specific targeted area which receives the brunt of the dose, there is also a surrounding area which receives some radiation also. In my case (mucoepidermoid cancer) they wanted to have this effect, as the idea is to kill any microscopic cells hiding out anywhere around where the tumor was. Proton therapy could have missed those. I don't know if the desired outcome of radiation therapy is the same for SCC or not, but you could ask your radiation oncologist about it. Hope this is of some help.