New and looking for some insight.

Welcome, so sorry you are here.

Mine also said keratinizing, but came back HPV 16 positive.

I know it feels like nothing is happening, but once you get started, it'll be a whirlwind. Get yourself a date book to keep your appointments together. Don't depend on your brain, or your phone, write it down.

I had the same background as you - no insurance so I waited.. Now I'm in it, its.. a tad overwhelming.

Hang in there, a lot of much more knowledgeable people than I will be along with advice.

Sue

mkwalters88,

Welcome to the H&N forum, sorry that you are here, but you do get the opportunity to gather info from the beginning.

I was stage IVa, scc, bot, 1 lymph node, hpv+ (surgery, rads & Erbitux).  I saw (and felt) the lump on my neck in November 2011, surgery November 2011, treatment January – March 2012.  Things actually moved pretty fast for me.  the ENT had seen a lot of it and wanted me in the que quickly. My rad and chemo onc were great and worked up a good plan.  There were some bumps along the way, but the goal was always in sight.

My sister is a doctor of viro-biology and worked with the hpv virus  for 8 years, recently retiring.  HPV, normally is a very slow grower and can take years to present itself.  Whatever you have must be  a slow grower too or you would have noticed more.

It sounds like you are zooming in on a plan, so you might as well start thinking about having a recovery Sumer all nice and warm. 

If you want, please check out the superthread for more info.

Matt

Yes, online info can be helpful and at the same time harmful/hurtful.  I was told by my aunt (who's a nurse) that there is informed and then there is overly informed.  It's a fine line.  Plus, once you begin  meeting more with your dr.'s they will load you up with info.  Trust   Once i stepped away from Google and looking up every possibility that could happen with my husband, it seemed like I could breathe again & so could he.  I was stressing him out.  Anyway,  I am so glad that you found this forum.  It does help.  Try and have a great weekend!  Take it easy & EAT  

Hello, 4 months post treatment for T1N3 SSC here. 35 radiation tx and 7 weeks of Cisplastin. Eat and gain some weight! Then eat some more. Hydration and Calories will be you savior. The people on here are great and have a wealth of real world information that the internet won't explain to you. Good Luck

 My husband was treated 2 years ago for stage IV tonsil cancer HPV+ and P16+. He first noticed a lump in his neck the 21st of September, 2014. It seemed like a very long road to treatment for him. He had a negative fine needle biopsy of the lymph node, followed by a negative tonsil biopsy. He was told he had a branchial cleft cyst, assured he did not have cancer, he waited until late Nov. to have it removed. The pathology report showed cancer at that time. They were unable to locate the primary site until after he had a Laryngoscopy, his tonsils removed, and multiple biopsies in Dec. This showed the primary site to be behind the left tonsil. He didn't start chemo and radiation until mid Jan. of 2015. He had to have his mask fitted,  meet with the oncologist, plus there were a lot of holidays that fell into that time period.  It seemed like forever, but once treatment began it was a heck of a ride. He is doing well now, 2 years later and cancer free. By far the best information I found was on this site for help with the side effects. Good luck with your treatment and as others have said, eat whatever you want and remember to stay well hydrated. 

made a point of taking you under their collective wings.  I've been gone, and I have an awful time trying to do this on my phone.  I know this is scary and overwhelming....like getting pushed out of an airplane, and landing in a new country where you don't know the language or the customs, let alone know where the hell you are!!  This hurry up and wait phase is the most stressful part of treatment, emotionally, anyway.   Seems that once treatment starts, people get into the fight mode....anxiety lessens, because at long last SOMETHING IS BEING DONE!!!  

I went about 6 months from first noticing something about me was off....to treatment beginning.  Supposedly SCC is a slow grower.

p

Hey Michael. Sorry to hear about your diagnosis. I was diagnosed back in January of this year with Squamous Cell Carcinoma located in 2 lymph nodes with the source located in the back of my tongue. I went under some pretty extensive testing for close to two months. Blood work, scan after scan, and finally outpatient surgery to have 3 biopsies done on my tongue. That's when they discovered the source and also confirmed it was P16 positive. I started treatment a few weeks after. 7 weeks of radiation and 2 rounds of chemo. Although the amount of time between diagnosis and treatment was no where near what you're going experiencing, I understand what you are going through. When someone tells you, you have cancer, you pretty much want to start getting rid of it as soon as possible. In the end i was grateful my radiologist, surgeon and oncologist went to the lengths they went too in the diagnosis process because had they not found out it was P16 positive, my treatment and side effects would have been a lot worse. A lot. So hang in there. Stay postive. It's all you can do. I am a graphic designer by trade and I built a website/blog to chronical my journey with all of this. You can view it here....myfightmystory.com. I couldn't find much online to get a good idea of what I was about to embark on. Hope it helps. That's why I created this site and was as forthcoming and honest as possible. Hang in ther bud. Hope it all works out for you. Good luck!

MMDowns said:

Read your blog last night.  Thank you for doing that.  It read like my husband's story.  We are entering our 6th week and we are so close to the end! We just keep telling ourselves that we can do this, that we are doing this.  He's doing really well for being in the 6th week.  The gross saliva is starting to make an appearance and he has a nasty case of thrush that makes even drinking water a chore.  But, he just stopped teaching and honestly if we had not made that agreement at the beginning I do think he would still be teaching.  He still plans on attending some tennis matches (he's a coach) and is telling everyone that he plans on being back at school May 1st. Which would give him one week to recouparate.  We will see  But then I read your last entry and it seems that you only took one week off.  I just wish for him, and you, that the taste comes back soon.  He spent all day on Saturday watching the cooking channel.  Seemed like torture to me.  It's the one thing that he says constantly "I just want to eat real food." He can still do oatmeal in the a.m. but after that it's Ensure.  We should've bought stock in Ensure. But it's temporary and if it means I get my husband for many years to come then we will drink Ensure until the taste buds come back.  Good luck to you in your recovery and I do hope you keep up the blog! 

I'm glad to hear that your husband is almost done with treatment.  I hope my husband starts his treatment by the end of April.  He had a dentist appointment at 4pm today so see if he needs any dental work done.  We are hoping not because that will delay treatment, but if he needs anything I don't think it will be too extensive.  And we want to take all of the right steps.  It sounds like your husband didnt' get a feeding tube??  I am hoping my hubby gets through without needing one.  He is a pretty determined person so I think he will.  But, hey, if he needs one he will get one. 

MMDowns said:

Read your blog last night.  Thank you for doing that.  It read like my husband's story.  We are entering our 6th week and we are so close to the end! We just keep telling ourselves that we can do this, that we are doing this.  He's doing really well for being in the 6th week.  The gross saliva is starting to make an appearance and he has a nasty case of thrush that makes even drinking water a chore.  But, he just stopped teaching and honestly if we had not made that agreement at the beginning I do think he would still be teaching.  He still plans on attending some tennis matches (he's a coach) and is telling everyone that he plans on being back at school May 1st. Which would give him one week to recouparate.  We will see  But then I read your last entry and it seems that you only took one week off.  I just wish for him, and you, that the taste comes back soon.  He spent all day on Saturday watching the cooking channel.  Seemed like torture to me.  It's the one thing that he says constantly "I just want to eat real food." He can still do oatmeal in the a.m. but after that it's Ensure.  We should've bought stock in Ensure. But it's temporary and if it means I get my husband for many years to come then we will drink Ensure until the taste buds come back.  Good luck to you in your recovery and I do hope you keep up the blog! 

Sorry to hear about your husband. Glad to hear he's on week 6 and the finish line is in sight. It's a very happy day once you cross that line I can assure you. Yeah the saliva thing really sucks. My radiologist was very animate about me washing my mouth out 10 to 12 times a day with the saline/baking soda solution. I'm sure your husband has been told about it. If not he should start right away. It's temporary relief, but it works. I've been drinking so much water since this all started. That seems to help as well. I also wash my mouth out with Act Mouthwash. It's alcohol free and helps your mouth feel a little less funky, even if for just a bit. 

I too am watching Food Network and any other cooking show for that matter to the point of driving my wife crazy. It does seem like torture, but something about watching people eat food, cook food or talk about food is oddly comforting. Like living vicariously through someone enjoying an amazing burger or stack of pancakes. I'm doing my best to supplement real food in place of the Ensure, but it's not easy. Some days, you just don't feel like trying. Kind of hard to explain how every piece of food you put in your mouth turns out to be disgusting. I'm finding oatmeal is tolerable as well as yogurt. Guess it just takes time. Tell your husband I said good luck and to stay positive. He's almost there. Thanks for reading my blog. God bless!