I feel kind of silly saying this when I am SO barely into treatment, but the first RAD I had, I got a very slight burning feeling in the back of my throat - more like the base of my tongue. I had my 3rd one today and again I have this very minor burning. I asked the techs about it today and they seemed very surprised that I would feel anything at all this early, and I remember the RO saying that I would probably be fine until between the 2nd and 3rd weeks. One tech even said today that they have "blocked that area" so they are even more surprised. Ok - so what does that mean - "blocked"? And the RO said the treatment area is from just above my right ear (he expects hair loss there), down my cheek and to just below the scar from my Parotid tumor removal on my neck. It seems like a pretty big area, but I know nothing about this stuff. Should I expect throat pain? Should I anticipate swallowing issues? My RO is being very vague and I know in time this will unfold on its own but I am much more comfortable knowing what is coming. I would sure very much appreciate hearing from anyone that has had a similar RAD treatment area. ANY info is much appreciated. Thank you!

There is a very small percentage of patients who have noticed discomfort from the very first day of rads (regardless of their tumor location). Everyone is a little different and will react in their own unique way to everything. Even in several patients with identical treatment plans of tumors the same size and location there can be a wide variety of differences. This is probably why your physician is being so vague. Its not possible to predict which side effects and to what degree a patient will experience them. Almost every patient will notice changes in their swallowing, sense of taste, pain ranging from a slight discomfort to debilitating pain and a sore throat. Many patients lose their voice during rads, like the other side effects its only temporary. To me, it sounds completely normal for you to react to rads like you have. Unfortunately, all the side effects gradually become more pronounced as you go along with the hardest days being after finishing rads. In doing a quick search here of the word Parotid, I found many posts referencing it as well as info on the main OCF website.

Parotid info from main OCF pages

Radiation info from the Main OCF site

When you have some free time, read thru posts here and check out the above links. You can also click on the blue phrases to get even more detailed info. An educated patient can be a much better advocate for themselves.

Best wishes!

Thank you, Christine. I have read the links and appreciate the info. I know that Parotid Cancer is not very common and hope that there is someone else out there that has been through it. I see in your signature that you have sure been through a lot. My heart goes out to you and I am too very glad you are alive and have slain the beast!!! You are so strong and I hope to be the same way in my journey!!

Hi Tracy,
Although my original diagnosis was in the gum area, my recent recurrence involved the parotid gland and I just completed radiation in December. I had been through radiation three years ago so I knew what to expect. My side effects were more like Christine described: no noticeable effects until 2-3 weeks into treatment, with the worst being the two weeks post radiation. My radiation oncologist warned me about the side effects you mentioned, but I never did experience throat soreness or difficulty swallowing (other than swallowing problems associated with neck dissection surgery). I did have the skin breakdown externally during the last week of treatment and was told by the dermatologist to keep vaseline on it at all times. I found it very helpful to work with a nutritionist regarding things easy to get down and I use a vitamix blender to make smoothies to keep from losing too much weight. I lost my taste two weeks into treatment, but it now returning eight weeks after completing treatment Hang in there! It's not easy to go through, but stay positive and keep looking ahead. It does get better! Best wishes as you complete your treatment and for a successful outcome!

Thank you so much for answering my post. I was starting to think no one would answer me. I am hoping to get through this with far less than what some people deal with. I am pretty strong and very determined to win.I'm embarking upon my first full week of RAD. Last week was just 3 days. I am going to take this one day at a time. Thanks again.

I also thought I felt something on my first few days. Then I did not again until two weeks in. What I was not prepared for was the feeling like things were still changing after I was finished.

Hi Tracy,

Just catching up on posts here. How are things going now? I suspect you are feeling more of the side effects of the radiation. Keep posting with changes you feel and we can offer various experiences and things we have done to help out.

It is a rough road, no sugar coating that but with the support of us here it will make the journey more comfortable.

Take care
Don

I really felt kind of proud of my mental attitude regarding my RADs. I was so anxious and terrified at first but I settled right into my treatment schedule and have pretty much been a trooper. Now, I have completed 18 treatments and I am anxious all over again. I have lost a significant patch of hair in the back of my head (behind my ear) that I didn't anticipate. The RO had mentioned hairloss above my ear, but not behind. That really threw me - I know, just vanity. My throat is sore, my mouth sores are being pretty well controlled with Gelclair. It tastes awful (not really taste, just a bitter taste in my mouth for a long time). I have lost most of my sense of taste (bitter and sweet seem the best right now) which was expected. I have 2 really badly swollen Occipital Nodes in the back of my head that caused me great concern. The RO sent me straight back to the ENT surgeon and he confirmed that they are not cancerous, but highly pissed off lymph nodes from the RADs. That was a huge relief! I know that the worst is yet to come and I know that is weighing on me heavily, but I still remain more interested in knowing before it happens than being shocked and taken off guard as I was with this hair loss. 12 more treatments and I will be finished (hopefully). My RO has always said "approximately" 30 treatments which makes me a little nervous. I am seeing a psych that specializes in cancer and RAD patients. She says I am doing well and have "lots of great coping skills" but I am learning how to compartmentalize the fear and grief of the cancer dx so that it doesn't take over my life. I think overall I am doing well, but waiting for the other shoe to drop. RIght now, I am getting by with Percocet and Zofran for some nausea on occasion. I think I will probably need more in the next week or two. How do your guys think I am doing? I am still swallowing and eating, but soft foods and lots of water while eating. RO says I should be able to swallow throughout because just one side of my throat is being treated with Parotid cancer. We shall see.

how are you doing cannot see any posts lately same cancer here for me 22 rad. in 11 more to go did you get your taste back yet troylowe06

Troy, unfortunately Tracy hasnt been back for several months so its unlikely you will receive a reply. Im hoping Tracy has made a speedy recovery and returned to their previous lifestyle and routines.

Ive sent you a private message (PM) with a link thats important. Click on the tiny flashing envelope next to the My Stuff tab near the top center of the page.