Base of Tongue Cancer

GeoK530

Hi all....newly diagnosed with SCC cancer at the tongue base.  As I'm sure all of you know, it's almost overwhelming to hear that you've been confirmed as having cancer, but after locating this site and discussion board, I am heartened by the support, information and helpful suggestions that other "cancer folks" offer here.  

Thankfully, my lesion is Stage II, T2 (3cm's), Nzero, Mzero, and won't require either surgery or chemo.  Six weeks of high-dose radiation once per day, five days a week.  After that, I understand the recovery from radiation during the next three or four weeks will be very difficult.  If that weren't enough, any teeth which might have root problems in the future had to be extracted, so I just had nine teeth pulled last Monday, went for a PET-CT Wednesday, and am now trying to swallow as much protein as possible before radiation begins on April 10.  

My wife and I are trying to cope with this (I'll be 79 on May4) as best we can and are praying for emotional and physical strength as we enter this tunnel.  I'm so thankful to the Lord that the cancer is contained to this mass and that it hasn't spread.  I know that our situation isn't as bad as some folks have, but we're still very anxious nonetheless.  So happy to be a member here and looking forward to daily visits.

Chicklette

Welcome!

Welcome to the club that nobody really wants to join.  However, if you find yourself in this situation, it's a wonderful place to find support and information.  My husband was diagnosed with SCC HPV+ with an unknown primary.  Because it's HPV related, the doctor said it was either tonsicular or BOT so they will treat both areas with rads.  He will be starting weekly low dose cisplatin with 36 daily rads.  We are not sure exactly when he will start treatment because he has to call his dentist on Monday to be sure his teeth are OK and then on the 10th he gets his mask made.  I expect he will start treatment by the end of April.  I'm glad you won't need chemo.  It makes the radiation side effects worse along with its own side effects.  I wish you the best of luck as you begin your journey.  Don't be afraid to lean on friends and family for support during this time.

~Chicklette~

GeoK530

Chicklette said:

Welcome!

Welcome to the club that nobody really wants to join.  However, if you find yourself in this situation, it's a wonderful place to find support and information.  My husband was diagnosed with SCC HPV+ with an unknown primary.  Because it's HPV related, the doctor said it was either tonsicular or BOT so they will treat both areas with rads.  He will be starting weekly low dose cisplatin with 36 daily rads.  We are not sure exactly when he will start treatment because he has to call his dentist on Monday to be sure his teeth are OK and then on the 10th he gets his mask made.  I expect he will start treatment by the end of April.  I'm glad you won't need chemo.  It makes the radiation side effects worse along with its own side effects.  I wish you the best of luck as you begin your journey.  Don't be afraid to lean on friends and family for support during this time.

~Chicklette~

SCC HPV

I'm honored to be among such brave and helpful folks who are going through the cancer trial!  I, too, have SCC HPV...goodness knows where that came from, not that it matters now.  I pray that your hubby doesn't have teeth problems like I have, since the radiologists want them pulled before starting the rad....while the oral surgeon/dentist will say to wail three weeks before starting radiation.  I had nine teeth pulled on Monday, went to a PET-CT on Wednesday and exams/interviews until yesterday....my wife and I are both exhausted.  Tell him that having the mask made isn't as bad as it may sound.  They'll give him sedatives if he wishes beforehand, but he should do just fine.  It takes a few minutes while they fit the mask and then run a couple of CT's so the doctor can be sure everything is lined up perfectly.   A speech therapist gave me a dozen swallowing and neck stretching exercises to prepare for the side effects a couple of weeks into radiation.  The throat will probably be very sore, making swallowing difficult, so the exercises are supposed to help that.  I thank the Lord that I don't need chemo as yet, but I know your hubby will get through this thing in great shape, just like the other folks who have beaten this thing.  Love and best wishes to you both.  Let me know how he does and I'll do the same on my end.  

CivilMatt

welcome

GeoK530,

Welcome to the H&N forum, where overwhelming is the way it all starts.

I was stage IVa, scc, bot, 1 lymph node, hpv+ (surgery, rads & Erbitux).  At least you will be able to blame everything on the rads, no wondering about it.  You should add swallowing water as much as possible and often.  Hydration is great, but the swallowing can become an issue, so use it.

There is no way to guarantee how side effects will mess with you, but a dry mouth and terribly funky taste buds are probably on your calendar in the near future.

Eat well or should I say nutrition well and strap in, it is a trip.

Matt

Chicklette

GeoK530 said:

SCC HPV

I'm honored to be among such brave and helpful folks who are going through the cancer trial!  I, too, have SCC HPV...goodness knows where that came from, not that it matters now.  I pray that your hubby doesn't have teeth problems like I have, since the radiologists want them pulled before starting the rad....while the oral surgeon/dentist will say to wail three weeks before starting radiation.  I had nine teeth pulled on Monday, went to a PET-CT on Wednesday and exams/interviews until yesterday....my wife and I are both exhausted.  Tell him that having the mask made isn't as bad as it may sound.  They'll give him sedatives if he wishes beforehand, but he should do just fine.  It takes a few minutes while they fit the mask and then run a couple of CT's so the doctor can be sure everything is lined up perfectly.   A speech therapist gave me a dozen swallowing and neck stretching exercises to prepare for the side effects a couple of weeks into radiation.  The throat will probably be very sore, making swallowing difficult, so the exercises are supposed to help that.  I thank the Lord that I don't need chemo as yet, but I know your hubby will get through this thing in great shape, just like the other folks who have beaten this thing.  Love and best wishes to you both.  Let me know how he does and I'll do the same on my end.  

HPV

I think it's a mystery to many of us where the HPV came from.  It usually has been sitting dormant for 20+ years according to the docs.  We mostly asked because we wanted to be sure I was not at risk.  They said I was not at an increased risk so that was good to hear.  Did they recommend a feeding tube?  I was surprised that they told my husband that most of their patients did not require them and they will only put one in if needed.  They want to encourage oral intake as much as possible to help prevent future swallowing issues.  They said most of their patients lose around 15 - 20 pounds.  So, we are hoping for the best.  I'm trying to be sure my husband drinks lots of water now and will encourage him to continue to do so throughout treatment.

GeoK530

CivilMatt said:

welcome

GeoK530,

Welcome to the H&N forum, where overwhelming is the way it all starts.

I was stage IVa, scc, bot, 1 lymph node, hpv+ (surgery, rads & Erbitux).  At least you will be able to blame everything on the rads, no wondering about it.  You should add swallowing water as much as possible and often.  Hydration is great, but the swallowing can become an issue, so use it.

There is no way to guarantee how side effects will mess with you, but a dry mouth and terribly funky taste buds are probably on your calendar in the near future.

Eat well or should I say nutrition well and strap in, it is a trip.

Matt

Thanks

Thanks, Matt, for your welcome comments.  The speech therapist gave me a dozen or so swallowing and neck stretch exercises, and I seriously take your advice on drink,drink,drink.  Got the mask fitted and simulation overwith....first rad session on 10 April.  Any advice on what to try to eat when swallowing will be very painful?  Since I'm 6 feet but only weigh 153, I can't afford to lose more than 10 pounds or so before they'll start considering a tube, so I'm determined to swallow food to hold that off.  Thanks again for acting as moderator.

Kapital

New

     Sorry for your diagnosis, but you are lucky to have found this forum. My husband had stage IV tonsil cancer 2 years ago, HPV and P16 +. Today, 2 years later, he is doing fine. I found a lot of helpful information on this site.

     It is a difficult road and radiation is no picnic, but at least you will be spared chemo and various surgeries. My husband did not have a PEG tube, as his Dr. wanted him to continue swallowing. Treatment was rough, but doable. He did loose a lot of weight, some from surgery, some from chemo, some from radiation. However, today he is able to swallow well and has no neck problems. His taste has returned to about 50%, about 60% of his saliva has returned and he feels fine.

     As others have stated, stay hydrated, swallow every day, take care of your skin and keep a positive outlook...it will get better. Good Luck.  

CivilMatt

what to eat

GeoK530,

The foods you will find appealing will be extremely limited (at least that is how most of us were).  You need to dedicate yourself to getting about 3k calories a day in any way possible.  When food is not palatable, you might find some ultra-high calorie drinks to get you by.  Usually, if you work at it you can do it, even if it takes all day. 

Soft foods easy to eat could be eggs or pancakes, some soups.  I tried everything, but came to like smoothies doctored up with nuts and vegetable oil.

Matt

GeoK530

Kapital said:

New

     Sorry for your diagnosis, but you are lucky to have found this forum. My husband had stage IV tonsil cancer 2 years ago, HPV and P16 +. Today, 2 years later, he is doing fine. I found a lot of helpful information on this site.

     It is a difficult road and radiation is no picnic, but at least you will be spared chemo and various surgeries. My husband did not have a PEG tube, as his Dr. wanted him to continue swallowing. Treatment was rough, but doable. He did loose a lot of weight, some from surgery, some from chemo, some from radiation. However, today he is able to swallow well and has no neck problems. His taste has returned to about 50%, about 60% of his saliva has returned and he feels fine.

     As others have stated, stay hydrated, swallow every day, take care of your skin and keep a positive outlook...it will get better. Good Luck.  

Thanks

Thanks, Kap, for your encouraging comments.  Matt and others have mentioned drinking lots of fluids, and the need to take in about 3K calories per day.  Hope the folks at Banner M.D.Anderson Cancer Center (Gilbert, AZ) will give me enough pain meds to offset at least some of the swallowing pain that's coming up.  I'm going to do my level best to get nutrition down the hatch and avoid the PEG.  Will also try to post updates here when things get rough.  Grace and peace of Christ to you, Kap.

phrannie51

Welcome GeoK....

I see a lot of support and good advice above me here....I had chemo and rads the first go-round, and just rads the second go round...my assessment is this....the second time was easier .  Not a walk in the park by a long shot, but not having chemo dragging down your body at the same time as rads, is easier. 

Post updates, and ANY questions you bump into here....the Dr.'s do the doctorin', and we help with the practical stuff.

p

rjsorensen

HPV

Yep, it got me as well and twice. I am 43 this year and I am pretty excited about that.  I did radiation first and I seemed to be ok, I was young and not aware about cancer three years ago. Now I am happy to share, I had radiation first, I developed an ulcer and that became cancerous. I now have a flap from my right leg muscle in the roof of my mouth.  Radiation makes you feel like you ran a 1/2 marathon, you just need to rest and worry about you.  Dont make the mistake I made where I didnt ask for an abundance of help, dont be so brave...your gonna need it! love, prayers and an open door for conversation, Oh and ensure plus will do the trick even thru your feeding tube, but...BUT make sure you are taking a laxative! 

 

 

GeoK530

CivilMatt said:

what to eat

GeoK530,

The foods you will find appealing will be extremely limited (at least that is how most of us were).  You need to dedicate yourself to getting about 3k calories a day in any way possible.  When food is not palatable, you might find some ultra-high calorie drinks to get you by.  Usually, if you work at it you can do it, even if it takes all day. 

Soft foods easy to eat could be eggs or pancakes, some soups.  I tried everything, but came to like smoothies doctored up with nuts and vegetable oil.

Matt

Speech

Hi Matt,

We leave Saturday for the Banner M.D.Anderson Cancer Center in Gilbert, AZ, and I'll have the first of 30 rad treatments on Monday.  Thanks to all the folks here, I've tried to prepare as best I can....anxious nonetheless, which I suppose is "normal".  A speech therapist at the Center gave me a list of ten throat exercises which I must do four times a day, but it makes me wonder if speaking becomes difficult or impossible during the six week treatment period.  Did you have a problem with this or know if others have?  Thanks...

CivilMatt

GeoK530 said:

Speech

Hi Matt,

We leave Saturday for the Banner M.D.Anderson Cancer Center in Gilbert, AZ, and I'll have the first of 30 rad treatments on Monday.  Thanks to all the folks here, I've tried to prepare as best I can....anxious nonetheless, which I suppose is "normal".  A speech therapist at the Center gave me a list of ten throat exercises which I must do four times a day, but it makes me wonder if speaking becomes difficult or impossible during the six week treatment period.  Did you have a problem with this or know if others have?  Thanks...

yes

GK530,

Yes, I did have speech issues, during and after treatments. I went to a speech therapist for some very good exercises.

Matt