ssc, hpv in tonsils on both sides and eblarged lymph node

I think that I was lucky in that I had a radiation oncologist at a university hospital who was also one of the senior professors as well... and he had an open mind. Several years prior to me entering the building, that same doctor had seriously considered leaving the teaching university to partner with the proton radiation place... but did not. Initially, he thought he might only treat one side.. at which point, he said, I was a prime candidate for proton radiation. However, since he ultimately decided to treat both sides (because of my nodal extension in one lymph node). He also gave his honest opinion that it was a coin toss between proton and IMRT if both sides are getting treated. When I asked him what he would do if he were in my place, he picked his staff to do IMRT.. because he knew his staff was really good at what they do. The radiation oncologist at the Proton place was a graduate of that same university medical school as the IMRT doctor.. and knew where those doctors were coming from in recommending IMRT (because the university hospital didn't have a proton machine to offer as an option). The proton doctor also told me that it was basically a "toss-up"; however, he 100% told me he would take the proton route if he was in my shoes. Not because of his staff.. but, because, as he put it, the proton route is much more "elegant". He said the track record for proton is one of minimizing collateral damage (i.e. saliva glands, etc.).

Choosing between the two treatments caused me a great deal of anxiety... which it shouldn't. If you ask a Ford salesman what make of car you should buy... he will say a Ford. I just happened to have a Ford salesman who said that if I didn't want a Ford, I should buy a Toyota... and that is a rare thing.

Ultimately, both doctors were telling me it was essentially a "toss up", and that the other teams were very competent. So, why not pick the one you feel the most confidence in? In my mind, from all the research I had done, I really wanted to go the proton route. Then, the IMRT doctor really presented a compelling case for his route by emphasizing how awesome his team was. Ultimately, my thinking was that if I went IMRT, and had serious side-effects, I would always regret my decision not to go the proton route.

My IMRT oncologist was really a great doctor. I called him probably 4-5 different times to ask questions and clarify things. He spoke to me very candidly.. and I really appreciated it. I really didn't know which route I was going to go until the absolute very last minute (although, I picked the route I wanted to go in the first place). If your IMRT doctor suggests the only option his/her facility provides... well, I think it is because he/she can't honestly recommend a treatment team with which he/she is not familiar. If you were at a place that offered both IMRT and Proton, your experience might be different.

The decision is up to you. Don't be angry.... Pray on it! Pray on it! Pray on it!. Make your decision and be happy with it (and don't look back). When I made the final decision, it was such a relief! To get there.... I asked lots of questions, did lots of research, and made informed choices for all of my procedures... and that is all I could do. Also, my proton radiation place did a great job sharing schedules and scan results with the university ENT / chemo oncologist.

Steven, LuvnTN is very smart and has a good story he related about his treatment and what guided his decisions and it should help you possibly with your situation. I hope you get your trust issues with your surgeon worked out and get the treatment plan you can be comfortable and confident with and move forward. If absolutely necessary, get a second opinion if you don't feel comfortable with your treatment plan. And like he said Pray on it! Pray on it! Pray on it! There is power in prayer.

Take Care God Bless-Russ

Very good Steven and thank you for the update. Glad for you that your radiologist is watching your case closely and did not want to keep waiting to start treatment. IMRT is another tool in the shed that they use and it sounds like this combination will work well to eradicate your cancer. They can tailor their radiation plan to give less radiation in areas they want to protect so hopefully your tongue and saliva glands can be mostly spared. That means a lot in the coming years. How is treatment going, apparently you have been able to tolerate the mask and the IMRT treatment? Are you also getting any chemotherapy with radiation or just radiation? You are on your way moving forward in the process to be cancer free.

Wishing You the Best

Take care, God Bless-Russ

Steven, you are handling this well and I am glad your doc provides some painkillers and is actively working with you to get you through this treatment. One day at a time and soon you will be there. Please let us know what you are dealing with as you go such as thickening saliva from the radiation or other effects and possibly we can offer some insight or suggestions to deal with whatever you are facing.

Forward

Take care, God Bless-Russ

Steven, sorry you have lost a bunch of your saliva-making ability but it is part and parcel of this H&N cancer experience. I too like many on here either need a coffee and or water or something to sip to keep our mouth moist. Another thing I do is chew gum because it helps stimulate saliva. Also, you can use Xylimelts which adhere to your tooth and help with saliva issues. When choosing gum read the ingredients and the closer Xylitol is listed to the beginning of ingredients the more Xylitol it has in it. Also, choose sugarless gum. Xylitol increases saliva flow so more is better for us dry-mouth folks. If the gum has no Xylitol in it there is no saliva-stimulating benefit.

Like any other sweetener, xylitol increases salivary flow which helps combat dry mouth. As seen above, lack of saliva is the reason your mouth gets dry. Increased salivary flow also promotes mineralization that is much-needed for strong and healthy teeth and gums[v].

Steven once through treatment and on the other side you may experience some return of saliva. Some have noticed a return of saliva in varying degrees. It seems we are all different in that respect so time will tell how much you get back.

Take care, God Bless-Russ

Steven your poor taste is due to the radiation. Eventually, everything will get to the point of tasting odd to bad to lousy and to no taste at all which is an odd experience itself and all this is a common occurrence in H&N radiation treatment. With no taste, I liken it to eating cardboard. It is very hard to eat when you have no taste. You literally have to force yourself to just eat the amount of food you need calorie-wise. Wishing you the best, hang strong. Your taste will slowly come back sometime post-treatment usually starting differently for most people but say maybe 3-6 weeks post-treatment.

Take Care God Bless-Russ