Hi Angels! I cannot sleep facing radiation treatments after successful surgery removed the node and primary BOT tumor? My swallowing has STILL not recovered 3 weeks post surgery and I am just now able to drink and eat a few items. I have dropped 15+ pounds so far. Besides that I will be awake throughout the radiation treeatments, I am very claustrophobic? Anyone have suggestions how to handle the FEAR? I am tired but afraid to sleep!! Thanks. Mark Cohen

I would suggest finding a therapist to help you deal with the anxiety. Ask at your treatment center if they have one who deals with cancer patients. To me it sounds like you need to take anxiety meds. Many here have used them to get thru this bad period, even some caregivers too.

Everyone is always afraid of the unknown. Thats normal, but its not normal to be paralyzed with fear. Try to think of this in a logical, clinical manner. Something like this.... you have cancer, you must get treated, you know it wont be easy, but it is mandatory to take care of this, Recovery will take a while, you will slowly return to your regular lifestyle. By breaking it down to the facts you know it may be easier for you to deal with. Stick to the facts and dont allow your mind to wander and play the "what if" game. Limit the time you spend thinking about all of this. Give yourself a set amount of time like 5 minutes when you start thinking of your situation then change the channel. If necessary, force yourself to think of something more productive and positive. Anxiety does NOT help you one bit, it is actually detrimental to your health.

Many have found it greatly helps them to be active members of the forum. By hanging around here you are among friends who understand what you are going thru. Many have felt the same way and been in similar situations. Its ok to vent. We get you!

Speak up today and make some calls to get the ball rolling to find help.

Best wishes!!!

Hi Mark,

To help with your anxiety, you might want to bring in a CD of your favorite music and get the radiation technicians to play it for you. Do you meditate? Even if you don't, you can try concentrating your mind by breathing in naturally and counting "one," and then breathing out and counting "two." It helps the body to relax. Sure, your mind will wander but it is okay. I use this technique when my mind is too busy and I can't fall asleep. You can do this during radiation too.

It's natural to have fear, as ChristineB mentioned, and there are meds to help with anxiety. They do a simulation before the actual radiation to make a mask, set the markers for the radiation field. Maybe they can do additional "dry runs" until you are comfortable. IMRT, and assume you are having that, is open, and not enclosed like the PET, CT or MRI. It's just restrictive with the mask, which they can cut the plastic for the eyes, mouth, but each place is different. The first day is usually the hardest, and most who used anxiety medicationed, soon cease, after being more comfortable.

Some use meditation, mental imaging to help, and most places play music, and even may be able to bring your own cd's to play to help keep your mind occupied.

The weight loss can be a concern since most lose weight during radiation treatment, and can effect your recovery, and others, so you may want to see a nutritionist, speech and swallow therapist, if not already done, and most CCC have them on staff.

Good luck with everything.

Mark � The Rad Tx may just go a lot better than you expect. Definitely ask about anxiety meds � it may make a lot of difference. The nurses and assistants in my son�s Rad Tx room were so very kind and helpful and distracted him with music, conversation and humor to help him through it. They even took a picture when he asked them to and if it helps to ease your mind, just click on this link to see it:
http://webpages.charter.net/xila/paulrad.jpg Keep in touch and let us know how you are doing.

Thanks for the reasons to be "normally" scared but NOT paralyzed by FEAR! Yes, I did take ONE Klonipen (like Valium) before a PET scan last week and that helped. I also returned to work 3 weeks post neck and base of tongue surgery at UCLA. I had the one + node removed by incision and the base of tongue tumor removed robotically at the same time. Clear margins and no extracapsular spread from that node. Since I am a PERIODONTIST for 25 years, I know "too much" and have a wide medical network to confuse me even more. PS: HPV+ cancer. It appears to me the treatments are not written in stone for HPV+ as far as radiation+chemo or radiation alone since the main tumors are GONE? One of my surgeons even suggested that, IF the node had been 1cm smaller (was 3.5 cm), he would opt OUT of any post surgery treatment????? Then I see the radiation oncologist and he throws the book at me for chemo-radiation????? Thanks for any input! Mark Cohen in LA

Hey, Mark
regarding the radiation - my husband is a scientist - and had a pretty good idea what the linac therapy machine was doing to him. He found that radiation mask 'curiously comforting' (his words) because it kept him in correct position for the therapy.

The 'correct' treatment for this type of cancer is still not well defined as you have noted, and you will have to depend on the skill of your doctors, your own analysis, as well as your risk tolerence. As you well know as a medical professional, your ability to properly analyze a situation is compromised by emotional involvememnt. My suggestion on that count is mediation/breathe control. You must know some Bhuddists in LA - if you can get a crash course in mediation (as I did from my brother-in-law) it might be helpful.
Maria

My spine surgeon brother/physician's oncologist from HIS hospital recommended NO chemo with the radiation based on my pathology report. What IS known combining, in MY case, carpoplatin x 6 +radiation x6 weeks? Every doc has their territory and there does not seem to be a consensus for post CLEAN surgery for HPV+16+ base of tongue cancer? I WANT to do the RIGHT treatment ONE time? Thanks Angels! Mark Cohen in LA

Then hit it with both barrels. Chemo is not that bad add it if its suggested.

Here is my take, If you have to get rads, I would get the chemo. Chemo sucks but it has shown to help. Curing first time is most important. I am un aware of any serious long term down sides to chemo, so you are trading, short term pain and suffering for less chance of reoccurance.

HPV or non HPV this is still a deadly disease. Now if you don't need rads, that's a different situation. Rads always have long term QOL issues.

Remember, it is always YOUR choice, Doc's just administer the treatment. If you don't agree with them, go somewhere else!