New and looking for some insight.

mkwalters88

Hello everyone, 

My name is Michael, 32 years old and somewhat diagnosed in January of his year. I say somewhat diagnosed because of my "occult primary" presentation. Left cervical lymph nodes so far seem to be all thats been able to be found. I had a direct laryngocscopy from the initial ENT working me up. Fortunately Im at a cancer center now, UNC Chapel Hill. Im having my tonsils removed next week as well as a full panendoscopy. My 2nd FNA done at the cancer center says "Malignant cells present, morphologically consistent with Kerratizing Squamous cell carcinoma with necrosis" I just wanted to say hello to everyone and was wondering about how long from diagnosis to start of treatment some of you experienced? I noticed the lymph node in August of last year, no insurance and had to wait until January to get to the doctor, now its almost April and a little anxious to get the ball rolling. Doc said I will have to have chemo (3 nodes on PET and proboble ECS on my CT report) Also has anyone had any experience with HPV? There was insufficient material to do the stains last FNA and another one is going to be done during my surgury. All I have been able to find online is that Kerratizing SCC usually correlates with HPV negative tumors. Ive been trying to keep positive, I just feel like Ive been in Limbo since Janaury. After this surgury there isnt much else diagnostically that can be done so curious on the length of time some of you exeperoenced going through the intial diagnosis to treatment. Thank you all for taking the time to read this and hopefully your input as well;.

 

-Cheers

SuzJ

HPV

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

MMDowns

Hello,

Hello,

 This is a wonderful place to get info, vent, whine, rejoice, etc... My husband was diagnosed this January with stage IV SCC in one lymph node.  Thye believe his is HPV+ becuase he has never been a smoke, chewer, or heavy drinker.   We were told this is becoming a very common diagnosis now.  Which stinks.  His treatment plan, which began on Feb 28th, consists of 3X of Cisplatin (it's a doozy), and 35 radiation treatments over the course of 7 weeks.  It is a waiting game.  We found out in early January and did not begin for about 7 weeks.  It's going to continue to be a hurry up and wait situation.

  I agree with SuzJ- get a notebook and a calendar.   If you haven't already- take a family member or a friend to every appointment.  That is key.  There is a lot of information that is going to be given and it's overwhelming.  

  I have read and now know that you need to eat while you can. Eat what sounds good, eat a lot of it, and enjoy it. When my husband was waiting for treatments to begin he ate more of the "bad" foods because our docotors told us that eventually he would be using his PEG (feeding tube) and it would all be liquids. We are getting close to that now.  Drink water, drink water, and then drink some more.  Hydration is key throughout the whole process.  My husband also goes in a few times to get fluids by IV, and that is so helpful.  

  You will be OK.  There are so many people that have taken this journey and are kind and compassionate and full of info.  This has been a life saver for me & my husband.  We are 3 weeks and 3 days from finishing our treatment and we cannot wait!!  It's been doable.  Day to day is how we have learned to take this journey.  Find the positive in each day and focus on that.  It's not easy but it does help.

   Good luck, you are not alone.

   

CivilMatt

welcome

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

mkwalters88

SuzJ said:

HPV

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

thank you so very much for

thank you so very much for taking time to reply, and I can only imagine how much more intense all this is going to get. Its been awkward not having anyone that can relate to talk with and Im glad i found the site. A family friend suggested forums and online support groups so I signed up. It was nice seeing that people responded. Again thank you so very much, you have no idea how much a relief it was reading your answer to my question. Have a great day.

mkwalters88

CivilMatt said:

welcome

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

Hey Matt!

Hey Matt!

Nice to meet you and thank you for the warm welcome. I cant tell you how nice it was to pull up the site and see that some of you got back to me so quickly. Definitly feel better about having a place to go to where others have gone through all of what lies ahead. Ill admit that I got myself stuck on reading journals and studies and stuff I can only hope im understanding. I think from here on out Ill spend my time on this instead. Will be much more helpful to my overall well being. Again thank you so much for the response and welcome! Im going to go check out that suoerthread! Take care and have a wonderful day.

mkwalters88

MMDowns said:

Hello,

Hello,

 This is a wonderful place to get info, vent, whine, rejoice, etc... My husband was diagnosed this January with stage IV SCC in one lymph node.  Thye believe his is HPV+ becuase he has never been a smoke, chewer, or heavy drinker.   We were told this is becoming a very common diagnosis now.  Which stinks.  His treatment plan, which began on Feb 28th, consists of 3X of Cisplatin (it's a doozy), and 35 radiation treatments over the course of 7 weeks.  It is a waiting game.  We found out in early January and did not begin for about 7 weeks.  It's going to continue to be a hurry up and wait situation.

  I agree with SuzJ- get a notebook and a calendar.   If you haven't already- take a family member or a friend to every appointment.  That is key.  There is a lot of information that is going to be given and it's overwhelming.  

  I have read and now know that you need to eat while you can. Eat what sounds good, eat a lot of it, and enjoy it. When my husband was waiting for treatments to begin he ate more of the "bad" foods because our docotors told us that eventually he would be using his PEG (feeding tube) and it would all be liquids. We are getting close to that now.  Drink water, drink water, and then drink some more.  Hydration is key throughout the whole process.  My husband also goes in a few times to get fluids by IV, and that is so helpful.  

  You will be OK.  There are so many people that have taken this journey and are kind and compassionate and full of info.  This has been a life saver for me & my husband.  We are 3 weeks and 3 days from finishing our treatment and we cannot wait!!  It's been doable.  Day to day is how we have learned to take this journey.  Find the positive in each day and focus on that.  It's not easy but it does help.

   Good luck, you are not alone.

   

Thank you, Thank you, Thank

Thank you, Thank you, Thank you,

I really appreciate the insight and info, It was really nice coming on the site and seeing the replies. A family friend suggested looking into online forums and support sites and Im glad I did. A lot of positive outcomes and advice on here from people experiecing the same things. Thank you again for the welcome and best of luck to you and your family. Im going to be shifting the time I spend online reading studies and journals, etc to this site. Ill admit reading all that stuff just makes my stomach upset, this is much better and Im grateful to be here. Have a great day!

MMDowns

Yes, online info can be

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  

AnotherSurvivor

Well, you got lucky coming

Well, you got lucky coming here.  I'm 3 months post treatment, doing well, and this is still my go-to resource, most other sites repeat the same general info.  I had excellent docs and nurses, but many questions remain unanswered, except for here.   I would suggest you begin by doing a thorough read of the superthread as it is loaded with a lot of observations by very experienced people.  

Sprint Car Dude

Fight The Fight

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

Chicklette

Welcome to the club

Sorry you have to be here.  I just joined on Monday.  My husband was officially diagnosed with SCC HPV+ with occult primary on Monday.  My husband is "BK64".  If you read his thread "allow myself to introduce.... myself" you can see his story without me retyping it here.  (I'm on my phone and typing on here can be a pain.). 

I dont have much much advice since we are just beginning this journey, but I can tell you the people here are very helpful and knowledgeabe.  I did the same thing as you at first ... tried to comprehend case studies and medical documents.  I think there is more valuable information here on CSN.  I spent countless hours in the past few weeks on this site typing key words into the search bar.  I feel like I know several members here even though we have never corresponded :-)

Best of luck to you and keep us posted.

~Chicklette~

Kapital

diagnosis to treatment

   

 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. 

 

 

 

 

 

 

 

 

mkwalters88

Hey there

Thank you for the reply. I had my second direct laryngoscopy as well as a thorough pandoscopy/tonsils removed on Thursday. Needless to say in bed and trying to rest as much as possible. Trying to stay upbeat and grateful. They also did another FNA on my neck. They are still trying to determine my hpv status. They tested my oringial biopsy which said appears to be negative for hpv-p16 but has substantial necrosis, the second FNA concluded kerratizing SCC but not enough material to test for hpv. Hopefully they got the goods this time . I'm so sorry to hear of the initial misdiagnosis. That's awful. The first doc was convinced it was a brachial cleft cyst. When he called me back into the office He said he was "stunned". So now just waiting on pathology and my follow up is on the 11th. Hoping that the primary is found and determine the hpv status. Thank you all again for the responses and support. You all have been great. 

phrannie51

Glad to see everyone has

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

Grandmax4

Get on the bus

5 years, 2 months ago, I was where you are..not the same cancer, but, cancer none-the-less~~~the kind, knowledgeable, people ( now friends ) on this site, loaded me up on the bus and we traveled together. The advice is given by ones that have gone before you, most important, take someone to your appointments to take notes, and swallow as much water as you can in a day. Head and Neck cancer  has made many, many advances and when you think, I can't do this, do it anyway. I'm not on here as much as I was when I was taking this journey, but, I stop in now and again to see if  I can assure others, this is doable~~you're going to be alright, and well be here to help you along

drewauld

I'm with ya bud

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

drewauld said:

I'm with ya bud

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!

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! 

Chicklette

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! 

Almost There!

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. 

Chicklette

Chicklette said:

Almost There!

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. 

Bummer

he needs one crown and three extractions... oh well.  I know it could be a lot worse!

drewauld

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! 

Thank you

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!

MMDowns

Chicklette said:

Almost There!

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. 

Hey there! sorry to hear

Hey there! sorry to hear about your husbands teeth but better now than later. I know, nothing sounds "good" as of this minute but he'll be OK. My husband in fact Does have a PEG and I am so glad he does. He can still swallow and does well but during chemo week it's So helpful. We weren't really given a choice, the rads dr pretty much told us he was getting one and why.  We use it daily just to get in extra fluids and nutrition. Usually in the am and pm. But everyone one is different. It depends on how your husband handles treatment  But determination can be a mighty tool! Hang in there.