H&N radiation

Like you, most of us had no previous experience with radiation treatment and the side effects. Is Proton better than Photon? Usually yes. But there are many cases where a broader range of area is in need of being zapped. There is also the cost consideration as well as the availability of a Proton unit.
So it is what it is. Now you need to rebuild. The issues you have for the most part will gradually subside. It could be months, likely years out when someday you realize you no longer have this or that problem.
My nightmare was the common sneeze. The pain from a sneeze would drop me almost to my knees. Tears were certain to flow. Eight years of this and then it stopped.
Nerve pain in my arms, neck, and shoulder lasted perhaps five years. Eventually time passes and so does most of the physical damage. We heal albeit far slower than any normal bodily injury. I like to say that radiation is like being cooked on the inside, a bad burn you cannot see. And a burn recovery is often the most difficult to overcome.
I wish you good healing and a good long life cancer free. I hope you get back to feeling somewhat normal soon.

20 years later, and I still deal with some of the problems created by neck cancer treatment. There is some pain, stiffness and discomfort, but most of it I've learned to live with. The one that has been most bothersome has been baroreflex failure. Of course, they told me that I may see consequences of radiation treatment 20 years out such as new cancers. Time will tell. All in all, I accepted the treatment that was available and I'm still standing. Some aren't fortunate enough to be able to say that. Good luck!

I did speak with my radiation oncologist. She is highly experienced. She explained why my cancer treatment needed photon (they do have a Proton system). It was thyroid/trachea. I had 35 treatments.

@kmlnj Very interesting comment, km. That your highly experienced radiation oncologist NEEDED PHOTON, not Proton. I was looking for, but could not find, information on when Photon is perferred over Proton. I suspect that my oncologist also takes that view, although I am not sure of that--or--if she lacks the knowledge of the two systems as well as it should be. Also i suspect that since Photon is more readily available, a professional may lean toward that treatment. Maybe someone else knows (read) why Photon is preferred over Proton in some cases. I am assuming the side affects of Photon is greater than Proton.

Yes. Thyroid cancel wrapped around my trachea and very close to my voice box. Thyroidectomy couldn't remove everything, messy and complex. They did take 2 lymph nodes. Highly experienced Surgeon and radiation oncologist and chemotherapy oncologist work closely on a team. I had 35 photon radiation and 6 chemotherapy boosters. Memorial Sloan Kettering.
Take care.

@kmlnj thank you. only 2 lymph nodes. I wonder what determines the number to make certain the cancer is contained.

@jaybbl1, I suspect that as Proton therapy becomes more widespread and available that there are more frequent decision making choices by the radiation oncologists. 14 years ago there wasn't a choice offered for my 35 treatments of radiation. Also insurance does not always cover Proton due to cost. A family member was just treated with radiation for throat cancer , multiple spots, but local, with no surgery. Both types were offered and he chose Proton due to chances of decreased peripheral damage, though he traveled farther to the Proton site.
It sounds like you have a lot of questions to be directed to your radiation oncologist and surgeon. Number of lymph nodes removed will depend on many things including location, grade of tumor, scans, and is ultimately the surgeon's decision during surgery. I had 19 removed at surgery but all on one side so luckily no lymphedema. There are Physical Therapists who specialize in treating lymphedema so hopefully your medical team can refer you to one in your area. All radiation is not created equal, I learned from the radiation oncologist at Mayo Clinic. I was fortunate to have their referral to a head and neck radiation oncologist at the University of Michigan, only 1 hour from home, rather than living in Rochester MN for 7 weeks. We are all different in our types of head and neck cancer, and we all may respond differently to treatment. I am just now, 13 years later, dealing with fibrosis and atrophy of neck, shoulder, and facial muscles. I can attest to healing taking years, with surprising improvements showing up when least expected. Be patient with your healing and research ways you can help yourself with the various side effects. There is a bright light at the end of the tunnel, it just takes a while to get there.
When the diagnosis is made we aren't offered a lot of time to research and make decisions. I believe we all want to get the cancer cut out and killed as soon as possible for best results. Keep looking forward and asking your medical team when questions arise. It is never too late to look for a second opinion at a large referral center if needed. Do you have such a facility within driving distance?

@sepdvm Thank you for your good feedback. Your excellent feedback. Since I am well aware the need for an excellent lymphedema therapist after doing extensive research, I interviewed and found a superb CTL, highly experienced, many years of MLD, and excellent education and training in this speciality. An added good quality, is that she is a really nice person. I am less than 2 hours from Johns Hopkins and the same distance from a Sloan Kettering branch. Luckly I found a therapist only 45 minutes from home which is much appreciated since I am going 2x a week. I posted early on this site my criteria used for evaluating a Lymphedema Therapist. Unfortunately I had almost 60 Lymph nodes removed...which I think is safe to say that almost guarantees Lymphedema. Third week of therapy, fifth week after completing 30 sessions of radiation. In a week or two I will start using a Lymphedema Pump with garments---I am looking forward to this additional support. Learned so much from this Mayo Site.