Left Tonsil and Lymph Node Stg3 Recent Diagnosis

BeagleDad,

Sorry that you are here though. To answer your question on driving yourself back and forth from Radiation Treatments, my answer would be "Yes". I had Surgery to remove the tumor on the Base of my tongue, part of my tongue was removed along with a Radical Neck Disection. After a period of about 7 weeks of healing, I started my Radiation and drove to all of them by myself. Fatigue will become an issue possibly. Each person reacts differently to the treatments. I did not have Chemo so I think in my case it was a factor on my driving to treatments alone.

I was a bit overweight when I found my cancer, the surgery caused me to use a Feeding Tube for sometime so my weight dropped to where is should have been, but Radiation took me below that point. It was a slow process, but I did gain weight back. I was 57 at the time, now 73. 

Other knowledgeable people will be along soon to answer questions you may have

My Best to You and Everyone Here

I would agree, that you most likely will be able to drive yourself to treatments, as long as it is close by. ( my treatment center was 2hrs away) I had Cisplatin for my chemo, and it was protocol for me to spend the night in hospital, so was able to drive myself.

My nutritionist encouraged me to eat anything and everything I could. She said we would deal with healthy choices later! I had a rough time ( 3 yrs ago) with lots of lasting issues, my husband, same treatment one year ago, came through with flying colors and no side effects. I know both sides, patient/ caregiver, hard time/ easy time. Don't hesitate to reach out. 

Good luck with your journey. This is a great place for advice, help, or just a friendly ear. I am happy you found us.

Take care

Driving will depend on whether or not you will need any medication prior to your radiation treatments. I am extremely claustophobic and had to take ativan before each treatment. I was not able to drive because of that. If I was not on ativan I would of been able to drive no problem, except for the 3 times I had my chemo treatments. As far as eating goes. Before treatment I was also slightly overweight. I had about 4 weeks before treatment started so I ate ate and ate somemore. Gained about 20 pounds. Had no feeding tube during treatment and lost about 30 pounds. Eat all your favorite foods now and enjoy. I lost my taste about 3 weeks into treatment. That was probably one of the hardest things for me to deal with. Makes it very difficult to eat solid food. Plan on alot of protein shakes. I was one of the lucky ones and got most of my taste back in about 1 year. I'm currently 2 years out from treatment and have 100 percent of my taste and saliva back. Your very fortunate to have found this site before starting your treatment. I learned more from my fellow cancer warriors than from all the doctors and support staff. Ask lots of questions about anything and everything. We are all in this together. Take care and God Bless.

Hi Don, i too had early stage right tonsil and one lymph node involvement. I only had radiation (proton) treatment. 6 weeks..5 days per week. I drove 3 hours (one way) to Mayo clinic in Rochester MN. i had no issues with the drive..actually enjoyed it. I also continued to work the entire 6 weeks. my pain level never really reached over a 5 or 6. I did need to use 'majic Mouthwash to help with eating (numbed my throat for about 10 minutes) the last week and 2 weeks after treatment. I only lost about 50% of my tastes during treatment. they only radiated my right  side ...one of the benefits of proton rads. 2 months post treatment  all was back to normal. slight dry mouth still at night when i sleep. I did lose 40 pounds but need to. LOL. I'm just over 2 years post treatment..all is back to normal although occassionally i have a bit of neuropothy on my neck/right side. and some slight stiffness. Hoping for the best for you. Very treatable and highly curable. Believe in your treatment team once you determine the plan and have a good/ positive attitude. take care!

BeagleDad said:

Proton

Great to read, thank you!  Mine has hit my lymph node so Dr claimed it was st3..although that is only preliminary.  Have an appt Monday with a tonsil cancer specialist to help figure out treatment.  My drive will only be 20 minutes, so that helps.  

I have read a lot of (older) posts about insurance not covering the proton treatment...did you experience that, or was yours covered?  

Man, if I could continue to work..that would be great.  Spoke with da boss last night and she is fine with me reducing hours and/or # of days as needed (Thankfully they REALLY like me there) and even changing from driver duties to inside restaurant "lighter" duty. (Although the tips are where I make my serious dough, I'll take what my body anbd boss let me have)  My work there is such a great outlet for me and it really bugs me to have to leave it.  

Do you attribute your "lower" pain and ability to stay working to the TYPE of treatment (proton) or other factors?  

It was very encourasging to read this, thank you.

you to read my posts..especially my first one. I go into great detail about my journey including overcoming initial insurance rejection of Proton therapy. Proton therapy benefits include, minimal colateral damage to important taste and swollow tissue. I also didnt need to have extensive dental work done....which was another huge benefit. Just search by my username: Skidog ....and it should pull up my posts. 

BeagleDad said:

Pain? What pain?

I appreciate you folks taking time to help me through my questions.

OK..I have read almsot every one of you had to deal with significant pain.  But none of you have actually told us WHERE is this pain of which you so often speak?  I have heard about patches and pills and liquified pain pills and the like ....and make NO MISTAKE I am NOT in the least doubting anything you experienced folks have to say...nor in ANY WAY trying to think that I will tolerate it any better than any of y'all.  

Is this pain primarily the super sore throat...like a weeks-long strep throat?  Is this in the jaw, or bone, or some other plpace?  I am just trying to psyche myself up (like an athlete playing out the game before he gets into uniform) ...  and I know you guys probably do not want to scare me out of my pants beforhand.  But are any of you willing to describe WHERE you experienced themsot pain that caused you to say "my pain was a 5 or 8 at the worst" or "I had a lot of pain but the patches helped", etc.  

Thank you so much.Don-Beagledad

Don - I will be brief(er).   Pain is subjective.  The 1-10 scale is useless if you don't know what a 10 is.   I have a high threshold.  I absolutely did hurt, but I never took meds.  "Magic Mouthwash" was my go-to when I had-to.  I will spare you the comparisons, but my pain got to *maybe* a three for a very, very short time right at the end. I was lucky not to experience pain about a 1 until right at the very, very end. 

The strep-throat part I will call a "1" and that lasted maybe two weeks?? Maybe / sort-of.  There is a particular phlegm that's just...a challenge.  When/if it happens to you remember that like all of this, it will pass.

Where did it hurt?  My cancer was on the right tonsil and I had most of the radiation to that area (but they blasted both sides).  The soft pallet got very "raw."  ...but it hurt in all the places a sore throat hurts and swallowing was no fun (I got a suction machine at one point so I didn't *have* to swallow; not everyone needs that).  <please remember that *I,* apparently, am wimpy>   Do your rinses and tooth care.  Super soft toothbrushes.  Go see your dentist.

But, I'm going to say this again - it is going to be what it is for you and it is temporary.  Women have multiple children. <proving that they are tough and that pain is forgettable>

I am jealous of others who got right back to their routines.   It took me a year.  The best advice I received (from right here) is to follow all of my healthcare team's advice and shorten my recovery time from a year to a mere 12 months.

I didn't read all of the comments above so I'm not sure if you are getting just radiation or radiation and chemo.  It looks like in your post you didn't know if it was HPV related.  Assuming you AREN'T getting chemo I wouldn't worry too much about putting on a lot of weight before hand.  You said you're already a little overweight so you might end up losing a little and end up feeling pretty good about yourself when it's all said and done.

If you end up getting chemo AND radiation then I'd suggest trying to gain a little in preparation.  Radiation alone isn't too big a deal as other suggest.  You'll be tired and toward the end you'll have a sore throat all the time.  Eating soft foods isn't usually too big a deal. 

Chemo plus radiation is a lot more disruptive.  Many folks end up getting feeding tubes because it's just to painful to swallow.

But again, some folks breeze through and others really struggle.  It will depend.

Good luck.

Brandon