My mother is getting ready to receive radiation treatment for cancer of the base of the tongue. I was wondering if those of you out there can share your experiences so we will know what to expect. What are the emotional aspects of it? I mean, my mother is a very strong person and has survived so many hardships and usually, her skin is so thick, that nothing can bring her down. But I was reading that the radiation can sometimes cause extreme emotions. Has anyone experienced this? What about other side effects such as nausea, sense of taste, digestion, pain, appetite. How have any of you or your loved ones dealt with these side effects? Do any of you have any suggestions on what I can do to make my mother as comfortable as possible? Will she feel like doing anything, going about her normal routine? Or will she want to stay in bed? I know everyone responds differently. However, I would like to know about everyone's various experiences. Also, are there any suggestions of foods and nutrition?

Any responses would be appreciated. Thanks a million.

Cocoa

Cocoa, you can try a search on this site if you want to get some of the past discussions relating to rad treatment. I had 35 sessions over 7 weeks and in general, because the treatments are cumulative, it is very easy in the beginning and gets tougher as time goes on. The worst part is immediately after treatment ends for about 3-4 weeks as rad is the "gift that keeps on giving" as we say here.

Rad is difficult on the throat and I recommend having a feeding tube (we call it a peg) inserted so mom can keep her water and nutrition up as this is very important during treatment. Also it is easier to take meds through the tube.

I was fortunate to be able to continue working throughout my rad/chemo treatments and drove myself to the treatments 60 miles one way, however as you noted, we're all different and some have had a more difficult time.

During rad, different things will happen at different times. Mouth and tongue burning, outside neck skin splitting and oozing, there are different things happening during the treatments. I hope mom is being treated at a cancer center where they have tons of experience. As some of the side effects occur, they will be able to help ease the problems. One thing to watch for is constipation. Try fruit juices (prune through the peg is good) and keep a supply of stool softener handy.

After effects happen differently also. I have very little taste left, my saliva production is way down and I carry a water bottle with me at all times. I have rad burn marks on my neck and scars from the surgery, but not to noticable. Some have had a lot more extensive surgery than I and had plastic surgery to correct some of the scarring.

Hopefully, this will help her get started. Will keep you all in my prayers.

Cocoa,

Welcome to this site -- I'm sure you'll be able to find a great deal of useful information to help your mother during her treatment.

There are many variables that can affect how a person responds to radiation, including: the stage and aggressiveness of the cancer (which will affect the treatment program), and the patient's age and general health at the outset. To emphasize one of Kirk's points, I would echo that I hope your mother is being treated at one of the major cancer centers (there is a list of NCI-designated centers under "Other Resources" on this site). With oral cancer, it is extremely important to be dealing with an experienced, multi-disciplinary head and neck oncology team that can bring all the right resources to bear as early as possible in the process.

Like Kirk, I continued to work during radiation, although my typical work weeks before cancer were in the 50-60 hour range, and during the latter stages of radiation I was probably down to about 30 hours. (Without going into a lot of details, suffice it to say there were certain aspects of my job that I felt I couldn't get away from entirely, even when I was feeling my worst -- which was from about the midpoint of radiation until 3-4 weeks after.) Back when I was treated, chemo was not generally used with radiation, so I didn't have the nausea/constipation issues that tend to be associated with that part of it.

The main side effects were pain/burning in my mouth (with some blistering), occasional infections, loss of taste buds, severe dry mouth and extreme fatigue. All of these things make nutrition a huge challenge -- I'm one of those who didn't have a PEG tube for feeding, but I did have to use "swish and spit" numbing cocktails before every meal once the pain set in. "Meals" generally had to be in liquid or mushy form: Ensure, Instant Breakfast, creamy combinations mixed up in the blender, baby food, cream of wheat -- you get the picture.

The general rule of thumb seems to be that it takes about one month of recovery time for every week of radiation, so your mother should be prepared for the fact that she will not immediately feel better once the treatment ends. Typically, the sense of taste returns gradually over several months and, depending on the type of radiation used, the dry mouth problem may lessen over time.

I'm sure you will also hear from others here who were not able to continue their normal routine due to the severity of the side effects, so realistically you will need to be prepared for a range of possibilities.

Feel free to come back whenever you need to ask more questions or support.

Cathy

Cocoa,

I too would like to welcome you to this site. You are going to find a wealth of information here as well as support to help your Mom and yourself get through this.

I am speaking from the caregiver's point of view. My husband went through 35 treatments of radiation on this throat. He has a very physical job, so he was not able to work after about 2 1/2 weeks into treatment. He was in a lot of pain, so we learned (the hard way) to keep on top of his pain meds so that the medication would not wear off. If you have to set your alarm clock at night to make sure she keeps up on her meds, do it.

My husband did not have a Peg and he lost over 40 lbs which he did not need to lose. I think because he was a healthy, strong guy, the Doctor's didn't think he would need one. Looking back, I'm not sure that was the right decision or not. But he's healing good now and it's 4 months post treatment. He still has not gained any weight back, but he's getting his strength back and he's eating a lot more now. And after the second month, he was back to work on a full time basis.

Give your Mom a lot of encouragement...she can do this! It's no walk in the park, I won't kid you, but there is light at the end of the tunnel. My best to your Mom, and to you too! Keep us posted, we are all rooting for her recovery.

Take care,

Shelley

Sorry, I wanted to add a couple of things I forgot to say earlier. As the others have said, everyone responds differently to radiation.

My husband got very fatigued and slept a lot from the middle of treatment to about 2 weeks after treatment. Also, my husband did not lose his sense of taste, which we were surprised because the doctors said he would. However, he did lose his saliva and now has to have a bottle of water with him at all times. Doesn't bother him in the least. Sorry to have rambled on, but the more knowledge you have, the better it will be for your Mom.

Shelley

Cocoa, you are in the right place to get information and please give us more details about your mom's illness such as the staging, dose of radiation, her age, etc. To me, the radiation did not cause me nausea but the chemo did. The most serious side effects of radiation were mouth and throat sore, extremely hoarse voice and burnt neck. Eating and even swallowing water became difficult for me when I was in the 4th week of the treatment. My treatment lasted 7 weeks.I did not have any feeding tube and lost about 16 lbs. I totally agree with some posters saying that the emotional disturbance was more difficult to cope with.I was severely depressed when treatment was over. Your mom needs family support and care the most now and if she is a strong lady, I think she can surpass all hurdles in front. By the way, Shelley, don't question whether you had made the right decision for not having the PEG because some members here lost more than 50lbs even with the tube on. As long as your husband is doing fine now, I think the decision was right.The simple thing is some patients do need the tube for survival and some don't. Just add my two cents worth.

Karen

Cocoa,

Welcome to the neighborhood. Get ready for the ride of your life. It won't be easy but it is a well traveled road. It is very important to keep yourself charged as the journey will take it's toll on you as well. Take time periodically for you so you can be all you want to be for your husband. He is very fortunate to have you by his side and especially as you are gathering information to help the process.

You will find a lot of information here but keep in mind as others are saying, everyone responds different to the same treatments. I have heard radiation is the worst of it all. I did not have surgery but I feared it the most. The chemo kicked my butt the hardest and radiation effects seemed to linger forever and I stil have some issues leftover from it.

Hang in there, it will be rough before it gets better but that day will come, too.

Ed

Hello Cocoa,

Did your mother have surgery? What was the staging of her tumor. Where is the primary tumor located? What type of radiation is she receiving?
I sailed through IMRT radiation with almost no side effects and I was a stage 4 tonsil (Primary)
Best of luck as you start the journey of your life. She can beat this!!!

Danny Boy

Hey everyone!

Thank you all for your helpful, inspiring, informative, and encouraging responses. I really appreciate it. I'm really scared for my mother and I want to help her any way I can.

First of all, I will try to answer some of the questions that some of you have asked. My mother is in her late 60's. As far as her cancer...well, all I can tell you is what I know. My mother has not always been up front because she does not want me to worry. That is one reason I am trying to find out all I can so I can educate myself to help her and bring some peace of mind to myself.

She was diagnosed in 8/04. I did see some of her medical records that she had to transport to another doctor. I can't remember what they said at the moment. I think that it was Stage I under the tongue, about 0.2 cm. (not completely sure - but I think that is what I remember) She had surgery to remove it in 10/04. The story gets a little fuzzy. All I can say is that she told me that when they removed it during surgery, they could not get it all. So now she is having radiation.

I don't know what type of radiation she is getting. I see many of you speaking about IMRT and general field radiation. What are the differences?

As for the place where she is being treated, it is a specialized cancer center but I don't know how renown it is.

Anyway, I guess I will be coming to this board a lot in the next couple of weeks. Thanks again to everyone for their input, advice, well wishes, and prayers.

Thanks to everyone!

Cocoa