tongue cancer

MarineE5 said:

Base of Tongue cancer here

lhovey,

I am sorry that you find yourself here on this site, but it is an active site with many knowledgeable people that will answer your questions. I found this site after I had completed my Surgery and Radiation treatments. 

Like you, I had part of my tongue removed (Base) with a Radical Neck Dissection with over 30 Lymphnodes removed and SCM.

My Surgery and Treatments were in 2004, I will try to answer some of your questions if I can. I did NOT have Chemo as my Surgeon stated that he got all the cancer and the Radiation was to clean up any stray Cells. Chemo was to be a backup in the event I had any future issues with the Base of Tongue cancer.

My Best to You and Everyone Here

Thank you for the information and thank you for your service!!  I am curious what others have gone through as far as lymph drainage (helpful hints) and nerve pain (restoring nerve health).  Any information you have with those two areas would be helpful!  There is comfort in knowing you are not alone.

swopoe said:

My husband was diagnosed with

My husband was diagnosed with tongue cancer in October 2015. His was stage 1, HPV- with perineural invasion. He had part of his tongue removed and a neck dissection too. No nodes were involved. He also had chemo (cisplatin) and rads. He is doing great at this point. Eats everything, except for very spicy foods and chocolate, works full time, and is back to normal. He has a scar on his neck but that is about it. He was lucky that he was able to work through his rads and chemo. If you have any questions, just ask. This site is full of amazing people who will help you get through!

I am so glad everything went well with your husband and his treatments.  It means a lot to hear from others!!!!

utfandg said:

It can be beat

I have been battling tongue cancer for 23 years. 4/4/18 we replaced 50% of my tongue with a radial arm free flap. 

 

I hope your recovery from the tongue replacement is going okay.  You are an inspiration!!  Thank you for sharing your story!

patricke said:

AM THERE, DO'IN THAT

Hey Ihovey,

I'm sorry to hear that you have joined our crew, but when one has been given the challenge, this is one of the best places for support, encouragement, and information. I had my battle with the beast in 9/2000 due to base of tongue cancer, and had a partial glossectomy and neck dissection too.  I also got the ever popular radiation treatment (35 visits to the dungeon), but no chemo (thankfully). I always thought that the radiation techs should have worn black hoods, because I always felt like I was going into a dungeon for torture. Treatmeant and recovery are full of ups and downs, with lots of challenges as you create your new normal. The watch words are patience, persistence, and perseverance, this is a marathon, not a sprint (as I am all too often want to say, but it is true). It is important to maintain an overall positive attitude, be flexible, and creative as you adapt to the changes in your life. In time you will establish a new normal and get back to the life and activities that you enjoyed before the battle, so it is also important to keep your eyes on the prize. After my dance in the surgery suite I could barely walk around the block, which was devastating for someone who (that would be me) has been a runner almost forever.  In time I was able to hit the road again, and run a couple of half marathons with my PEG tube. I was also get back out into the surfing wave lineup, also with my PEG tube (duck taped to my chest), to re-experience the thrill of riding waves.  So, hang in there and you will get back to your life again too; it just takes time...  Lastly, my mantra, to get me through the tough times, was and is "I Can Do This," and so can you!  I wish you the best on your journey.  Keep It Mov'in Forward.   

PS:  There is a Facebook site for Laryngectomy-Glossectomy Support (which is what it is called), that you might want to check out at some point in time.  It is another great place for support and information.    

Patrick       

Thank you so much for your kind words and encouragement!!  I feel so blessed I didn't have to experience the dungeon.  Many people would say to me...you are doing so well, how are you holding it together?  I told them that if I had to have chemo or radiation, then they would see me fall apart.  I watched my mom go through chemo and I would prefer not to experience that first hand.  I have admiration for those of you who have to go through chemo or radiation.  So, bravo to you!!!  You are an inspiration!!  When I feel discouraged I will think about you running your marathon and surfing.  Most of the time I am able to stay positive but I am having trouble with lymph drainage and range of motion of my arm after the neck dissection.  Some days I just feel tired of fighting it.  It is getting better so I will Keep It Mov'in Forward!  I keep hearing my mom's voice saying, "This too shall pass!"

Thanks for your encouragement!!!!

L

I have an update.  My blood pressure had gone way up because of the nerve pain so I started doing some research.  I bought some over the counter Lidocaine.  I just got a generic brand but Aspercreme is a brand name.  Once a day, I have been applying it to my neck and shoulder and it has calmed down my nerves or at least I don't feel them constantly all day long.  It has lowered my blood pressure.  It is amazing what the body copes with because now when the nerves begin to "Poke" at me, I realize how much pain they were causing.  It has been a miracle for me and hopefully my nerves will learn to calm down.  If not, at least it lowers my blood pressure.