Lymph node cancer- treatment options - need suggestions

TampaMatt

About a year and a half ago I was diagnosed with cancer on my tongue.  Moffitt cancer center in Tampa cut out the infected part of my tongue and two zones of lymph nodes ( to see if they were also affected - they weren't) on the left side of my neck.  Everything was good until month and a half ago when a lump under my chin turned out to be cancer in my lymph nodes under my jaw.   So the cancer had moved!  Moffit is now suggesting surgery to remove the affected area and grinding down part of my jaw bone as necessay and then chemo and radiation 4 - 6 weeks after surgery.  The doctor stated she may also need to use part of my greater pectoral muscle to fill in any skin void in the event there is not enough skin under my jaw after the cancerous tumor is removed.  This entails pulling the pectoral muscle up under the skin to the area under my jaw.  She said I'd have a loopsided chest and obvious deminished strength on that side as well as some possible drooping of my facial muscles on the right side of my face.  I'm concerned because this seems pretty envasive and will leave me pretty jacked up.  I'm only 47 and single and would still like to have a social life after this.   My other option is with FLorida Cancer Specialists who have recommended chemo and radiation for 6 weeks and no surgery.   They say after radiation my sense of taste may never return, my jaw bone would be esentially dead, and I'd have dental and mouth issues most likely for the rest of my life.  Has anyone gone through anything similiar and have any suggestions?  I'm in need of some survivors advice.

swopoe

My husband had radiation and

My husband had radiation and chemo last year for tongue cancer, and his sense of taste has returned. He sees his dentist every 3 months, and so far no problems with his teeth either. But he didn't have jaw bone removed. Can I ask if you had chemo and rads the first time around or just surgery?

TampaMatt

swopoe said:

My husband had radiation and

My husband had radiation and chemo last year for tongue cancer, and his sense of taste has returned. He sees his dentist every 3 months, and so far no problems with his teeth either. But he didn't have jaw bone removed. Can I ask if you had chemo and rads the first time around or just surgery?

Can I ask if you had chemo and rads the first time around or jus

I just had surgery!  This will be the frst time I'll go through chemo and radiation.   I thought I'd be ok with the surgery part since I did ok with it the first go around but this possible cutting and moving of the pec muscle sounds like it's a bit of overkill especially when I can just do chemo and radiation alone at a different treatment facility.  The other doctors that are recommending just chemo and radiation were saying that they would radiate my entire neck (ear to ear) and then focus alot of the radiation on the tip of my jar.  I got the second opion from Moffitt because I'm terrified of the long term side effects of the radiation and my jaw bone.

TampaMatt

Bart T said:

SHARING MY THOUGHTS AND WISHING YOU WELL

Sorry to hear of your troubles. I had also had tongue cancer and had part of my tongue and all lymph nodes on one side removed by surgery. That was followed by radiation and some chemo. If I understand correctly, with or without the surgery you’re in for chemo and radiation. You may have the very difficult choice of balancing the most effective treatment against a better quality of life. Sounds like the surgical route is very harsh.

Later this I’ll be a 5 year survivor. I can say the mouth issues you mention are real, but are manageable. I’ve also been told part of my lower jaw is dead, but on a day to day basis, there is no consequence unless you need to have a tooth pulled or if you might be in an accident and break it. I had a whole batch of cavities and root canals since my radiation, and previously had very little dental work.

My sense of taste came back to almost normal shortly after the radiation although most foods are too salty or not sweet enough. The main mouth issues I have are dry mouth which I still can’t get used to. Daytime isn’t too bad, but I wake up several times a night from the pain of the dryness and need to drink water. I think I’ve tried all of the dry-mouth remedies and none of them work.

The other most annoying residual in my mouth is anything alcoholic burns, even moderately spicy foods are too spicy for me, I can’t enjoy tangy and citrus fruits such as pineapples, and crispy foods such as nuts and granola feel like broken glass. I would say my menu of foods which I can enjoy is down to about 20% of what it used to be. From what I can tell, most members are able to eat more normally, so I may have just a bit more side effects than others. Keep in mind this is just my experience. Everyone is different, and has different degrees of problems.

Don’t be misled, radiation is rough to go through. Although you don’t feel the radiation itself, the effects build up as the days go by. It was very painful to say the least and, swallowing and eating was very difficult. Full recovery takes many months or longer. I lost about 25 pounds (was OK as I was a bit heavy going into it), and weight loss during and shortly after is very common. Some people have so much difficulty swallowing and eating they use a feeding tube.

Despite what seems like some very bleak commentary by me, I can say it was well worth it because I’m here to complain. Other than eating my old food and drink, there is nothing that I can’t do or enjoy that I used to do or enjoy. I work, have a family with grandkids, and have a very active lifestyle.

 Come here frequently for support and advice. I wish you the best. 

Thanks Bart!  Your words mean

Thanks Bart!  Your words mean alot to me right now.   I actually found them to be inspiring. 

Yes, either way they're recommending chemo and radiation. That's why I'm wondering if it is worth it to go through the surgery as well as recommended by Moffitt.  Or just do the chemo and radiation.  They feel pretty confident that this will take care of it for me.   

Congratulations on your 5 year mark brother!  I hope you have many more.

Bart T

SHARING MY THOUGHTS AND WISHING YOU WELL

Sorry to hear of your troubles. I had also had tongue cancer and had part of my tongue and all lymph nodes on one side removed by surgery. That was followed by radiation and some chemo. If I understand correctly, with or without the surgery you’re in for chemo and radiation. You may have the very difficult choice of balancing the most effective treatment against a better quality of life. Sounds like the surgical route is very harsh.

Later this I’ll be a 5 year survivor. I can say the mouth issues you mention are real, but are manageable. I’ve also been told part of my lower jaw is dead, but on a day to day basis, there is no consequence unless you need to have a tooth pulled or if you might be in an accident and break it. I had a whole batch of cavities and root canals since my radiation, and previously had very little dental work.

My sense of taste came back to almost normal shortly after the radiation although most foods are too salty or not sweet enough. The main mouth issues I have are dry mouth which I still can’t get used to. Daytime isn’t too bad, but I wake up several times a night from the pain of the dryness and need to drink water. I think I’ve tried all of the dry-mouth remedies and none of them work.

The other most annoying residual in my mouth is anything alcoholic burns, even moderately spicy foods are too spicy for me, I can’t enjoy tangy and citrus fruits such as pineapples, and crispy foods such as nuts and granola feel like broken glass. I would say my menu of foods which I can enjoy is down to about 20% of what it used to be. From what I can tell, most members are able to eat more normally, so I may have just a bit more side effects than others. Keep in mind this is just my experience. Everyone is different, and has different degrees of problems.

Don’t be misled, radiation is rough to go through. Although you don’t feel the radiation itself, the effects build up as the days go by. It was very painful to say the least and, swallowing and eating was very difficult. Full recovery takes many months or longer. I lost about 25 pounds (was OK as I was a bit heavy going into it), and weight loss during and shortly after is very common. Some people have so much difficulty swallowing and eating they use a feeding tube.

Despite what seems like some very bleak commentary by me, I can say it was well worth it because I’m here to complain. Other than eating my old food and drink, there is nothing that I can’t do or enjoy that I used to do or enjoy. I work, have a family with grandkids, and have a very active lifestyle.

 Come here frequently for support and advice. I wish you the best. 

stevenpepe

I will give my experience...

I'm not too confident with chemo and radiation without surgery. Here's why.

I am a patient of Memorial Sloan-Kettering in New York. I was told by my doctors that tongue tumors that are not caused by the HPV virus (mine wasn't) don't respond well to chemo and rads alone. I had surgery, a left neck dissection that revealed one node with cancer, then radiation all along my neck. Worse yet, if the chemo and rads don't work and surgery needs to be done, surgery on radiated tissue can create a lot of problems.

My after-treatment PET scan revealed a node on the right side of my neck that had grown while it was being radiated. Pretty scary. Even worse, it grew to over 2 cm. Previous scans didn't pick it up and we are assuming it was there from the beginning. I'm not so confident radiation does the job as we are led to believe.

I had to repeat the process twice this year, only with chemo added in. I just finished yesterday and I feel pretty OK. I'm already back to work.

I understand your reasons for not wanting surgery, and that's your decision to make. My neck looks pretty jacked right now and I absolutely hate it. A lot of tissue was removed as a precaution. I just believe that cutting out the tumor and getting rid of it all at once, can have a better prognosis in the future.

I'm lucky to be in a relationship with a wonderful woman who has been by my side from day one. But I often think about being single and how I would move forward socially after cancer. It can be a serious issue.

As for HPV, if yours is positive, chemo and radiation work very well with those tumors. I read one doctor say "they just seem to melt away." Go figure. Good luck with whatever decision you make.

Drivingdaisy

FLA Cancer Specialist

Who have You talked with there?  I am in Sarasota & have My Chemo Dr there.  Between Dr Lunin ( Fla Cancer Specialists) & My Rad Dr at 21st  Onocolgy they pursed My Throat somewhat more gentle.  No surgery, less envasive Rad/Chemo combo ( still a ****) last yr & was diagnosed NED all yr.  Do you have HPV 16 +?  I got excellent results with a back-up plan, just in case.  So If you want to talk message Me, I will do the best to help.  Hugs, Lisa

TampaMatt

stevenpepe said:

I will give my experience...

I'm not too confident with chemo and radiation without surgery. Here's why.

I am a patient of Memorial Sloan-Kettering in New York. I was told by my doctors that tongue tumors that are not caused by the HPV virus (mine wasn't) don't respond well to chemo and rads alone. I had surgery, a left neck dissection that revealed one node with cancer, then radiation all along my neck. Worse yet, if the chemo and rads don't work and surgery needs to be done, surgery on radiated tissue can create a lot of problems.

My after-treatment PET scan revealed a node on the right side of my neck that had grown while it was being radiated. Pretty scary. Even worse, it grew to over 2 cm. Previous scans didn't pick it up and we are assuming it was there from the beginning. I'm not so confident radiation does the job as we are led to believe.

I had to repeat the process twice this year, only with chemo added in. I just finished yesterday and I feel pretty OK. I'm already back to work.

I understand your reasons for not wanting surgery, and that's your decision to make. My neck looks pretty jacked right now and I absolutely hate it. A lot of tissue was removed as a precaution. I just believe that cutting out the tumor and getting rid of it all at once, can have a better prognosis in the future.

I'm lucky to be in a relationship with a wonderful woman who has been by my side from day one. But I often think about being single and how I would move forward socially after cancer. It can be a serious issue.

As for HPV, if yours is positive, chemo and radiation work very well with those tumors. I read one doctor say "they just seem to melt away." Go figure. Good luck with whatever decision you make.

 I've read what youy're

 I've read what youy're saying about the HPV and radiation and chemo.  Mine is SCC.   I feel the same way as you about just getting it out with the surgery.  I've scheduled mine for next week.  It's honestly just the pectoral flap/flip that I'm really concerned with!  I've talked again with my doctor and she's thinking that the chance of needing to do the pec flip is less than 50%. So I'm going to roll the dice and hope she doesn't need to do it.   My doctor says that I should still be able to do everything I did before even if she needs to do the pec flip.   My doctor says that I should still be able to do everything I did before even if she needs to do the pec flip.  Fingerscrossed!  

It sounds like you've been through hell and back!  I'm glad to hear you're back to work.  I know getting back to work for me last time made me feel somewhat normal again.  I was never so happy to be at work in my life!

Thanks for your imput!  I do appreciate it!

TampaMatt

Drivingdaisy said:

FLA Cancer Specialist

Who have You talked with there?  I am in Sarasota & have My Chemo Dr there.  Between Dr Lunin ( Fla Cancer Specialists) & My Rad Dr at 21st  Onocolgy they pursed My Throat somewhat more gentle.  No surgery, less envasive Rad/Chemo combo ( still a ****) last yr & was diagnosed NED all yr.  Do you have HPV 16 +?  I got excellent results with a back-up plan, just in case.  So If you want to talk message Me, I will do the best to help.  Hugs, Lisa

Hi Lisa,

Hi Lisa,

Mine is SCC.  I was talking with Dr Melchert and Dr Kahn, the radiologist in Fla Cancer Specialists/Tampa Bay Radiation Oncology in Brandon/Tampa.  Dr Kahn stated he'd just radiate me from ear to ear and focus alot of the radiation on my chin where the infected lymph nodes are.  It's the long term radiation impact that really worries me.  I know I'm in for it either way but I'd like to lessen my exposure as much as possible.  Moffit says I could just do radiation and chemo but the radaition treatments would be two weeks longer without surgery.  They (Moffitt Cancer Center) feel surgery, chemo, rads treatment gives me the best chances of getting rid of this.

Drivingdaisy

Hi Matt

Hey Matt.... So sorry just sent Private Message.  Stupid Chemo Brain here will follow-up with Dr reference 2nd opinion.  My Radiologist I feel is excellent at 21st Onocology, Sarasota.  Dr Larry Silverman (941) 364-8887.  Your Radiation Dr I feel key to this.  My Chemo Dr is at FCS here in Sarasota, Downton Office.  Dr Lunin (941) 957-1000. Both were highly recommended by My ENT, Silverstein Institute, Sarasota, Neuro/Back Surgeon, Internists.  May want to discuss with them.  Would be easy to view your records.  2nd opinion always good idea.  I did NOT go with Moffit since did not hear all that much Positive other than for Prostrate Cancer, even then often would promote surgery.  Since We live so close I will message you my phone #, if you wan to talk furture.  I understand that you want the best quality of life especially at your age tho I am only 10 yrs older in body but not always in mind.  I take cancer seriously but....... I want to live MY life to the best of my ability.  For Me it is " Quality Not Quanity".  I am also a Rescue & Rehab Foster here in Sarasota.....is that a Pittie With you in the picture?  Love Me some Pitties.  I have 3  Rescues of My own, just lost our 4th bit guy this past yr.  Hard, was in the beginning of Recovery.  PS, Was your Cancer ever tested for HPV 16+ ?  That is another key to all this.  It is becoming a major factor for so many, & often a cause for re-occurrence.    Very important to find out.

CivilMatt

Welcome

TM,

Welcome to the H&N forum, sorry you are here and sorry about your options. 

It doesn’t matter now, but didn’t you have the option of rads & chemo on the first go-a-round?  Either of your new options should rid you of cancer.  On the second choice, don’t you still end up with the jaw and dental issues, which will need to be addressed?  In either case you will receive rads and chemo, so in both cases you may have issues with taste and saliva.

I do not know the best course to take, but I’ve read a lot about jaw and teeth issues on this site.  If Florida Cancer has a good explanation for possible jaw issues, I would like to hear it.

One of our most active H&N member’s was treated at Moffitt Center and has a lot of good to say about their facility and staff.

By the way, many of us are SCC and HPV+.

Good luck,

Matt

TampaMatt

CivilMatt said:

Welcome

TM,

Welcome to the H&N forum, sorry you are here and sorry about your options. 

It doesn’t matter now, but didn’t you have the option of rads & chemo on the first go-a-round?  Either of your new options should rid you of cancer.  On the second choice, don’t you still end up with the jaw and dental issues, which will need to be addressed?  In either case you will receive rads and chemo, so in both cases you may have issues with taste and saliva.

I do not know the best course to take, but I’ve read a lot about jaw and teeth issues on this site.  If Florida Cancer has a good explanation for possible jaw issues, I would like to hear it.

One of our most active H&N member’s was treated at Moffitt Center and has a lot of good to say about their facility and staff.

By the way, many of us are SCC and HPV+.

Good luck,

Matt

My first time they (Moffitt)

My first time they (Moffitt) just did a partial tongue disection and removed two zones lymph nodes from the left side of my neck - no chemo or rads.  I had to go through physical therapy to get my left arm use back.  I heard good things about the radiologist doctor at Moffitt.  They say if you're going to receive radiation to the head/neck, this is the guy to see.  Tues the 24th is D-Day!  My doctor said she'll most likely have to cut a nerve the runs along the bottom of my jaw and grind down part of my jaw bone and she said I should expect arm issues again.  I'm just hoping and praying that she doesn't need to do the pec flip deal, as that would only complicate my arm therapy even more so, amoung other things.  I'll verify with my doctor again if I'm just SCC only.  I would think she would have told me if I was also HPV but I didn't ask specifcally. 

TampaMatt

Drivingdaisy said:

Hi Matt

Hey Matt.... So sorry just sent Private Message.  Stupid Chemo Brain here will follow-up with Dr reference 2nd opinion.  My Radiologist I feel is excellent at 21st Onocology, Sarasota.  Dr Larry Silverman (941) 364-8887.  Your Radiation Dr I feel key to this.  My Chemo Dr is at FCS here in Sarasota, Downton Office.  Dr Lunin (941) 957-1000. Both were highly recommended by My ENT, Silverstein Institute, Sarasota, Neuro/Back Surgeon, Internists.  May want to discuss with them.  Would be easy to view your records.  2nd opinion always good idea.  I did NOT go with Moffit since did not hear all that much Positive other than for Prostrate Cancer, even then often would promote surgery.  Since We live so close I will message you my phone #, if you wan to talk furture.  I understand that you want the best quality of life especially at your age tho I am only 10 yrs older in body but not always in mind.  I take cancer seriously but....... I want to live MY life to the best of my ability.  For Me it is " Quality Not Quanity".  I am also a Rescue & Rehab Foster here in Sarasota.....is that a Pittie With you in the picture?  Love Me some Pitties.  I have 3  Rescues of My own, just lost our 4th bit guy this past yr.  Hard, was in the beginning of Recovery.  PS, Was your Cancer ever tested for HPV 16+ ?  That is another key to all this.  It is becoming a major factor for so many, & often a cause for re-occurrence.    Very important to find out.

I got your PM.  Thank You.   

I got your PM.  Thank You.   

I've heard good things about the H&N radiologist at Moffitt.  I agree with you about quality not quanity!  I considered not doing anything and just travelling but every doctor I spoke with said it would be a horrible way to go.  I've talked to doctors at Florida Cancer Specialts, UF Proton Institue in Jacksonville (no benefit for me they said) and I did the round table with all the doctors I would deal with at Moffitt.  Although I think its going to be the roughest route, I've decided on going with Moffitt: surgery, chemo and rads.  My doctors there feel confident that this could get rid of it!  Praying!

Yes that's my red nose pittie- he's a shelter dog and my best friend.  I couldn't ask for a better dog.

My doctor only said mine was SCC when I asked.  I'll inquire about the possibilty of HPV+ too.

cbeaz4626

I understand....completely

I'm 47 too and was diagnosed with SCC in my tongue last year (March).  Surgery was to remove 1/2 of my tongue, a skin graft from my forearm to replace what they removed, skin graft from my leg to cover my arm, a trach tube, a feeding tube then an infection in the graft on my arm led to another surgery and a final surgery to remove all of my teeth to prepare for radiation/chemo.  It was very overwhelming.  

Chemo and radiation I did at the same time, chemo once a week and radiation 5 days a week.  They are both rough.  Not trying to discourage you just telling my story.  For me, I wanted to know what to expect and I didn't want to hear it was rainbows and butterflies and find out it was much worse.  Surgery was tough.  Lots of swelling and obviously you feel uncomfortable because someone has been cutting on you.  The pain from that to me was manageable and frankly got a little better every day so I felt like I was moving forward.

 The chemo/radiaton was a little different and worked in the opposite way.....it got worse as the days went on not better.  I got sick immediately with chemo and other people not sick at all.  Typically, I got chemo on Monday at 9 am and was throwing up and sick by Monday at 11 am while I was still getting the chemo.  My nausea lasted most of the week.  I would highly recommend asking them to schedule you for extra IV fluids if you are experencing a lot of nausea.  It helped me a great deal.  

Radiation was a different story.  The first thing they did was make a stint (a hard plastic mold of your mouth) that I had to hold in my mouth to keep my lower jaw in the radiation field and my upper jaw out of it.  You had to hold still in the tube with this God awful thing in your mouth and swallowing with it in was impossible)

 As radiation progresses you can start experencing a lot of mucus (sorry its gross but its what I dealt with) my throat also became pretty raw so I was constantly spitting all of this extra fluid into tissues...I kept the kleenex companines in business.  Holding still for the radiation was tough feeling like I was going to choke on all the mucus.  Further, they bolt you to the radiation table and have you wear a mesh mask to help them pin point the same area every time.  At first it was a bit disconcerting but after a while you get used to it.  My people played really good music during treatment so I did what I could to focus on the music and try to "escape" for a while.  I learned the sounds of the machine so well that I could tell when it was getting close to ending.....I imagine you will do the same.  

I was glad that I got the feeding tube.  There was a time when I could swallow absolutely NOTHING, not even water.  Blisters will form in your mouth, throat, tongue and esophogus during radiation and stay for weeks/months afterward.  They WILL eventually go away but had I not had the feeding tube it would have been really hungry.  I had weight to lose before all this happened and throughout this process I lost 90lbs.  I still have the tube but I have not used it in quite some time.  Dry mouth came about 2 months post radiation.  It was sudden.  I constantly have water and I use biotene spray at night.  It does tend to wake me a few times a night but it's manageable.  All of this is manageable but thats not to say I haven't gotten down right pissed at the situation what what I've had to go through.  You'll hear people say "new normal" alot.  I hated it at first but it is true.  You will get back to being you eventually but you will be a stronger you.  Going through what we with head and neck cancer go through makes you realize you have strength that you didn't know you had.  It's brutal and we've all gotten through it one day at a time.  My taste has not fully returned.  I dont taste much "sweet" and certain things will taste fine one day but not the next.  Something as mild as cinnamon burns my throat now so I avoid anything with any sort of spice.  

If it were me, I would have the surgery....it sounds invasive but I would not want to chance it by only doing chemo radiation.  This group helps.  Come here and ask all your questions!  Hang in there, you got this!

I mostly drink smoothies as I still dont have teeth but hopefully that will be over with soon.  

TampaMatt

cbeaz4626 said:

I understand....completely

I'm 47 too and was diagnosed with SCC in my tongue last year (March).  Surgery was to remove 1/2 of my tongue, a skin graft from my forearm to replace what they removed, skin graft from my leg to cover my arm, a trach tube, a feeding tube then an infection in the graft on my arm led to another surgery and a final surgery to remove all of my teeth to prepare for radiation/chemo.  It was very overwhelming.  

Chemo and radiation I did at the same time, chemo once a week and radiation 5 days a week.  They are both rough.  Not trying to discourage you just telling my story.  For me, I wanted to know what to expect and I didn't want to hear it was rainbows and butterflies and find out it was much worse.  Surgery was tough.  Lots of swelling and obviously you feel uncomfortable because someone has been cutting on you.  The pain from that to me was manageable and frankly got a little better every day so I felt like I was moving forward.

 The chemo/radiaton was a little different and worked in the opposite way.....it got worse as the days went on not better.  I got sick immediately with chemo and other people not sick at all.  Typically, I got chemo on Monday at 9 am and was throwing up and sick by Monday at 11 am while I was still getting the chemo.  My nausea lasted most of the week.  I would highly recommend asking them to schedule you for extra IV fluids if you are experencing a lot of nausea.  It helped me a great deal.  

Radiation was a different story.  The first thing they did was make a stint (a hard plastic mold of your mouth) that I had to hold in my mouth to keep my lower jaw in the radiation field and my upper jaw out of it.  You had to hold still in the tube with this God awful thing in your mouth and swallowing with it in was impossible)

 As radiation progresses you can start experencing a lot of mucus (sorry its gross but its what I dealt with) my throat also became pretty raw so I was constantly spitting all of this extra fluid into tissues...I kept the kleenex companines in business.  Holding still for the radiation was tough feeling like I was going to choke on all the mucus.  Further, they bolt you to the radiation table and have you wear a mesh mask to help them pin point the same area every time.  At first it was a bit disconcerting but after a while you get used to it.  My people played really good music during treatment so I did what I could to focus on the music and try to "escape" for a while.  I learned the sounds of the machine so well that I could tell when it was getting close to ending.....I imagine you will do the same.  

I was glad that I got the feeding tube.  There was a time when I could swallow absolutely NOTHING, not even water.  Blisters will form in your mouth, throat, tongue and esophogus during radiation and stay for weeks/months afterward.  They WILL eventually go away but had I not had the feeding tube it would have been really hungry.  I had weight to lose before all this happened and throughout this process I lost 90lbs.  I still have the tube but I have not used it in quite some time.  Dry mouth came about 2 months post radiation.  It was sudden.  I constantly have water and I use biotene spray at night.  It does tend to wake me a few times a night but it's manageable.  All of this is manageable but thats not to say I haven't gotten down right pissed at the situation what what I've had to go through.  You'll hear people say "new normal" alot.  I hated it at first but it is true.  You will get back to being you eventually but you will be a stronger you.  Going through what we with head and neck cancer go through makes you realize you have strength that you didn't know you had.  It's brutal and we've all gotten through it one day at a time.  My taste has not fully returned.  I dont taste much "sweet" and certain things will taste fine one day but not the next.  Something as mild as cinnamon burns my throat now so I avoid anything with any sort of spice.  

If it were me, I would have the surgery....it sounds invasive but I would not want to chance it by only doing chemo radiation.  This group helps.  Come here and ask all your questions!  Hang in there, you got this!

I mostly drink smoothies as I still dont have teeth but hopefully that will be over with soon.  

I understand....completely

Thank you for your brutal honesty!  I'm sorry to hear what you've been through.  After hearing your experience I'm ashamed to be asking "why me?". 

I'm glad to hear you would go with the surgery as well.  I've been questioning this decision over and over.  I go in today for "pre-op" for a Tues surgery.  I'm exhausted already and I haven't even begun.