New Tongue Cancer Patient Here

stevenpepe

Hello all,

I was diagnosed with SCC on February 23, 2016. One time light smoker, having quit over 25 years ago. No HPV. Checked myself into Memorial Sloan-Kettering Cancer Center in New York, immediately, where I had surgery and neck dissection. One node out of 22 showed cancer. I have recovered well from surgery with a slight speech impediment.

I begin rads/chemo in about two weeks. Reading these posts, as well as, posts across the internet, has given me good insight as to what I can expect. I am not looking forward to it. I will check in with my progress as I go.

Flyfisherman

Tonge Cancer

Steven,  sorry for what you are going through.  I went through the surgery a year ago.  Non smoker, but did have SCC and HPV.  Partial Neck disection where they opened me up from ear to ear and found cancer in 5 nodes and my tonsils and also removed a large mass from the tongue base.  Did the chemo and radiation.  What has changed for me is my speech and I always have to keep water because the radiation killed my salivation glands.  This plus the surgery has made swallowing hard for me.  On the good side, I have lost 120 lbs...just not the way you want to lose.

If you are like me, your eating patterns will change and you will be looking for foods that will give you protein and calories.  I can eat anything I want to, or can eat...and I am not worried about weight packing on as much as it falling off.  Lot's of the foods I used to eat, I can't and have no desire for now.  Pizza is pretty much gone as are burgers and most breads.  I find myself eating a lot of soups and fish.  No ribeyes, but I can eat a little filet if it is tender.  I do still eat cheese!

I am still doing speech and swallow therapy and have been blessed with good Doctors and Medical personnel.  I don't look at things the same way as I used to.  Now, it is what it is and why sweat things that in the big picture, really are not imortant at all!  What matters is your faith, family and friends.  The rest is just something that we deal with and the wonderful part of it, is we are still here to deal!

Stay strong.  Use your support net.  You never know how many people are in your corner until you hit a rough patch like you are going through!

CivilMatt

welcome

Stevenpepe,

Welcome to the H&N forum, sorry that you are here, but I estimate you are around 5 weeks from the rads bothering you.

Not to worry, most of us have been there and hopefully you will slide through with minimal challenges.

Easily the best advice I received from this forum was to drink lots of  water and to swallow often.  It may become a task, but it is a task which pays huge dividends.

Keep your team informed on ALL changes and side effects from treatments, there are good suggestions and remedies to these pesky unwelcome cancer  perks.

Another early onset condition to stop many of us was constipation; you will want to be ready for all.  Waiting for a weekend to get over to get into see a doctor is cruel and inhuman, be prepared.

There, I feel better and I hope you do too.

Good luck,

Matt

SusanUES

Magic Bullet

Sorry for your diagnosis...I'm in NYC and an MSK vet, too.  Amazing hospital and a very caring staff, you are in excellent hands.  I highly, highly recommend the Magic Bullet (pretty inexpensive little blender).  I keep one at home and one in the office.  It's ideal for making power shakes, which you will need to keep the weight on after rads.  If you want to have a coffee or talk, I'm happy to do that for you, too.  You'll do fine!

SusanUES

Just thought of something to cheer you a bit...

Steven, the rads room has Pandora...get busy making a mental list of what you like to listen to.  Your team will be happy to plug in anything.  I listened to oldies, jazz, country, blues, Motown (I did not subject my team to opera, though).  I especially love Dusty Springfield and Marvin Gaye and my team would have that playing as I walked in.  It sounds trivial at such a time, but believe me, music really helps for the 15/20 minutes you are on the table...just don't bop around!

denistd

SusanUES said:

Just thought of something to cheer you a bit...

Steven, the rads room has Pandora...get busy making a mental list of what you like to listen to.  Your team will be happy to plug in anything.  I listened to oldies, jazz, country, blues, Motown (I did not subject my team to opera, though).  I especially love Dusty Springfield and Marvin Gaye and my team would have that playing as I walked in.  It sounds trivial at such a time, but believe me, music really helps for the 15/20 minutes you are on the table...just don't bop around!

Pandora

Hi Susan, good to hear you like Dusty, she was an old aquaintenance of mine bak in Britain in the sixties, we toured together and had a great time. Sloan Kettering is a great place although that's not where I went but my oncologist is from there. Hang in there Steven and read my post on here titled  7 years out.

swopoe

Hi Steven-
My husband was

Hi Steven-

My husband was diagnosed with tongue cancer in October 2015. Stage 1, no nodes involved. No HPV, never a smoker. He had surgery (part of tongue removed and neck dissection)in November and he started chemo and rads in December, finishing up in late January. So that was three months ago. I want to tell you that the treatment for my husband was hard. But he made it. He had a clear scan at the end of February (he has another scan on Monday) and at this point, his only lingering side effects are limited saliva and some funky taste buds. He did have a slight speech impediment after surgery too, but that is all gone now. He eats almost anything he wants, has been back to work since February, and looks great. You will make it through this.

What you need to do now before the rads and chemo start is eat as much as you want of whatever you want. It will be hard to do that later. Also keep drinking water or anything. Keep swallowing and keep doing that every day. Make sure your treatment team puts you in touch with a nutritionist. You will need one at some point. I love the idea of picking music for Pandora. My husband also listened to music during his rads. We also had certain CDs that we listened to in the car on the drive to the hospital. And we watched several TV series on the iPad on the days he had chemo. (We watched all of Sherlock and Jessica Jones. Both great show, by the way.)

Please keep checking in. You will be in my thoughts and prayers. All my best.

wmc

Welcome to H&N group

Welcome and sorry, you need to be here. It  affects everyone different and some have very little problems. Let us know your progress. I do recommend reading the Superthread and like Matt, keep hydrated and keep drink water.

Bill

stevenpepe

Thank you all!

I appreciate the welcome, although I would rather not be here. It's nice to know there are so many folks in the same boat who have had success with their treatments. I have lots of confidence in my team at MSK. They are super supportive, caring, and professional. My biggest concern is the radiation and its after effects. But, I'm preparing well, based on all I've read here and elsewhere. Thank God for the internet!

stevenpepe

swopoe said:

Hi Steven-
My husband was

Hi Steven-

My husband was diagnosed with tongue cancer in October 2015. Stage 1, no nodes involved. No HPV, never a smoker. He had surgery (part of tongue removed and neck dissection)in November and he started chemo and rads in December, finishing up in late January. So that was three months ago. I want to tell you that the treatment for my husband was hard. But he made it. He had a clear scan at the end of February (he has another scan on Monday) and at this point, his only lingering side effects are limited saliva and some funky taste buds. He did have a slight speech impediment after surgery too, but that is all gone now. He eats almost anything he wants, has been back to work since February, and looks great. You will make it through this.

What you need to do now before the rads and chemo start is eat as much as you want of whatever you want. It will be hard to do that later. Also keep drinking water or anything. Keep swallowing and keep doing that every day. Make sure your treatment team puts you in touch with a nutritionist. You will need one at some point. I love the idea of picking music for Pandora. My husband also listened to music during his rads. We also had certain CDs that we listened to in the car on the drive to the hospital. And we watched several TV series on the iPad on the days he had chemo. (We watched all of Sherlock and Jessica Jones. Both great show, by the way.)

Please keep checking in. You will be in my thoughts and prayers. All my best.

I am happy for your husband!

I am happy for your husband! Yes, I am eating everything in sight. Nothing low fat, all the ice cream, pasta, and loads of healthier fats and proteins, in hopes of gaining as much weight as I can. I have the skinny gene so I can't afford to lose too much. I'm hoping to put on at least 10 pounds before eating becomes a problem.

stevenpepe

SusanUES said:

Magic Bullet

Sorry for your diagnosis...I'm in NYC and an MSK vet, too.  Amazing hospital and a very caring staff, you are in excellent hands.  I highly, highly recommend the Magic Bullet (pretty inexpensive little blender).  I keep one at home and one in the office.  It's ideal for making power shakes, which you will need to keep the weight on after rads.  If you want to have a coffee or talk, I'm happy to do that for you, too.  You'll do fine!

My wonderful girlfriend

My wonderful girlfriend bought me the Magic Bullet just prior to surgery and it's been a Godsend. Thank you for the good thoughts!

stevenpepe

CivilMatt said:

welcome

Stevenpepe,

Welcome to the H&N forum, sorry that you are here, but I estimate you are around 5 weeks from the rads bothering you.

Not to worry, most of us have been there and hopefully you will slide through with minimal challenges.

Easily the best advice I received from this forum was to drink lots of  water and to swallow often.  It may become a task, but it is a task which pays huge dividends.

Keep your team informed on ALL changes and side effects from treatments, there are good suggestions and remedies to these pesky unwelcome cancer  perks.

Another early onset condition to stop many of us was constipation; you will want to be ready for all.  Waiting for a weekend to get over to get into see a doctor is cruel and inhuman, be prepared.

There, I feel better and I hope you do too.

Good luck,

Matt

Thanks for the advice, Matt.

Thanks for the advice, Matt. I've been warned of the issues with chemo/radiation. My docs at MSK don't encourage a feeding tube, which surprises me since it seems so many folks have one put it. I really don't want it in fear of losing my swallowing capabilities.

stevenpepe

Flyfisherman said:

Tonge Cancer

Steven,  sorry for what you are going through.  I went through the surgery a year ago.  Non smoker, but did have SCC and HPV.  Partial Neck disection where they opened me up from ear to ear and found cancer in 5 nodes and my tonsils and also removed a large mass from the tongue base.  Did the chemo and radiation.  What has changed for me is my speech and I always have to keep water because the radiation killed my salivation glands.  This plus the surgery has made swallowing hard for me.  On the good side, I have lost 120 lbs...just not the way you want to lose.

If you are like me, your eating patterns will change and you will be looking for foods that will give you protein and calories.  I can eat anything I want to, or can eat...and I am not worried about weight packing on as much as it falling off.  Lot's of the foods I used to eat, I can't and have no desire for now.  Pizza is pretty much gone as are burgers and most breads.  I find myself eating a lot of soups and fish.  No ribeyes, but I can eat a little filet if it is tender.  I do still eat cheese!

I am still doing speech and swallow therapy and have been blessed with good Doctors and Medical personnel.  I don't look at things the same way as I used to.  Now, it is what it is and why sweat things that in the big picture, really are not imortant at all!  What matters is your faith, family and friends.  The rest is just something that we deal with and the wonderful part of it, is we are still here to deal!

Stay strong.  Use your support net.  You never know how many people are in your corner until you hit a rough patch like you are going through!

Thanks for sharing your

Thanks for sharing your story. I'm hoping I can be one of the luckier ones out here. Scary to think your life could be ending at such a young age!

swopoe

stevenpepe said:

I am happy for your husband!

I am happy for your husband! Yes, I am eating everything in sight. Nothing low fat, all the ice cream, pasta, and loads of healthier fats and proteins, in hopes of gaining as much weight as I can. I have the skinny gene so I can't afford to lose too much. I'm hoping to put on at least 10 pounds before eating becomes a problem.

Oh thank you. My husband was

Oh thank you. My husband was at 200 lbs and 6' before treatment started. Now he is holding steady at 185 lbs. he got down to 180, but 185 looks great on him. So he wants to stay there. Eating lots now is a good move. As for other radiation side effects, watch your skin. My husband had minimal skin burns from radiation. He was told to use aquaphor on his skin every day. He put aquaphor on his skin right after radiation (he took it with him to the rad center) and then again every night before bed. He did that every day for 6 weeks. It really helped. So keep moisturized. Good luck!

GavinP

Hi Steven

Sorry you have to be here but you won't find a better community to discuss your progress with.

You don't say whether you have SCC on the base of your tongue or on the side/floor of your oral tongue?

It sounds like you have idiopathic SCC... I had moderate dysplasia to my tongue depite never having smoked or drank much (I never asked about HPV but it was never mentioned)

Sometimes (probably more often than the medical profession like to admit) people just get unlucky.

Good luck with your treatment. You certainly couldn't find a better forum to share this period of your life with.

Tonita

swopoe said:

Hi Steven-
My husband was

Hi Steven-

My husband was diagnosed with tongue cancer in October 2015. Stage 1, no nodes involved. No HPV, never a smoker. He had surgery (part of tongue removed and neck dissection)in November and he started chemo and rads in December, finishing up in late January. So that was three months ago. I want to tell you that the treatment for my husband was hard. But he made it. He had a clear scan at the end of February (he has another scan on Monday) and at this point, his only lingering side effects are limited saliva and some funky taste buds. He did have a slight speech impediment after surgery too, but that is all gone now. He eats almost anything he wants, has been back to work since February, and looks great. You will make it through this.

What you need to do now before the rads and chemo start is eat as much as you want of whatever you want. It will be hard to do that later. Also keep drinking water or anything. Keep swallowing and keep doing that every day. Make sure your treatment team puts you in touch with a nutritionist. You will need one at some point. I love the idea of picking music for Pandora. My husband also listened to music during his rads. We also had certain CDs that we listened to in the car on the drive to the hospital. And we watched several TV series on the iPad on the days he had chemo. (We watched all of Sherlock and Jessica Jones. Both great show, by the way.)

Please keep checking in. You will be in my thoughts and prayers. All my best.

Your husband's situation

Your husband's situation sounds similar to mine but I wasn't given any post op treatment.  No radiation and no chemo.  42 lymph nodes and no cancer in any of them and they got all the tumor.  I wonder why?

stevenpepe

Hi Gavin

My tumor was located under the left side of my tongue, near the front. I found it early because I could see and feel it. No HPV. Possible tobacco related but haven't smoked in 25 years. So, there's some mystery about it.

swopoe

Tonita said:

Your husband's situation

Your husband's situation sounds similar to mine but I wasn't given any post op treatment.  No radiation and no chemo.  42 lymph nodes and no cancer in any of them and they got all the tumor.  I wonder why?

Tonita,

Tonita,

He Was given the option to have no chemo or rads after surgery and just wait it out and watch. But the recommendation from the cancer board was to still go ahead with further treatment. There were several reasons for this. One was that my husband's tumor showed perineural invasion, which meant that the tumor showed that it was more likely to invade the nerves. Another reason is that my husband was only 40 at the time of diagnosis and with 3 young kids, the doctors wanted to hit the cancer as hard as possible. So we went all out with the treatment. So far so good. Hopefully the next scan tomorrow will still be NED.