Oral cancer Tongue

Bunnymom

last July I was diagnosed with tongue cancer. I had the leison removed. Margins looked good. Next, lymph nodes were removed no cancer. My first follow up PET CT showed one lymph node. I had surgery to remove it. Encapsulated. Only one node. Also had my submandular gland removed. I just had my next follow up scan and something else lit up. Going to the doctor on Friday. He is not sure what the scan means until he examines me. Said the area is not my tongue or throat but in between. I have a hard spot under my chin on left side (original side where tongue cancer was found). I thought it was just scar tissue from last surgery. I also had a problem with the right side of my tongue, unexplained pain. At first we thought a rough tooth but didn't go away after smoothing the tooth. No leison. Can't really even see anything. im wondering if the pain on right side of tongue has anything to do with left side lump? I'm so worried. Can't sleep and am very worried. Can anyone help me please? I'm hoping it's inflammation but am so scared. 

CivilMatt

welcome

Bunnymom,

Welcome to the H&N forum, so sorry you find yourself here.

I was stage IVa, scc, bot, 1 lymph node, hpv+ and I had surgery, radiation and Erbitux as treatments.  You did not say, but I assumed you are about 5 to 6 months out from treatments (rads & chemo).  If I am wrong, I am sorry for guessing.

If you had rads, then finding a hot spot on your first scans would not have been unusual.  For myself, I felt no pain where my tongue or neck were operated on.  Neither are there any lumps.  My mouth does feel funky, but I thought that was from the rads.

Maybe, you need a second opinion on your issues.  If you received a full course of treatments I would expect you to start feeling better.  It does take some people much longer than others.  As long as you are under the care of a reliable physician, you most likely are in good hands and these issues will be nothing, but stay on top until you know.

Good luck,

Matt

Bunnymom

CivilMatt said:

welcome

Bunnymom,

Welcome to the H&N forum, so sorry you find yourself here.

I was stage IVa, scc, bot, 1 lymph node, hpv+ and I had surgery, radiation and Erbitux as treatments.  You did not say, but I assumed you are about 5 to 6 months out from treatments (rads & chemo).  If I am wrong, I am sorry for guessing.

If you had rads, then finding a hot spot on your first scans would not have been unusual.  For myself, I felt no pain where my tongue or neck were operated on.  Neither are there any lumps.  My mouth does feel funky, but I thought that was from the rads.

Maybe, you need a second opinion on your issues.  If you received a full course of treatments I would expect you to start feeling better.  It does take some people much longer than others.  As long as you are under the care of a reliable physician, you most likely are in good hands and these issues will be nothing, but stay on top until you know.

Good luck,

Matt

2nd post tongue cancer

Matt,

thank you for the reply. I have not had radiation or chemo. I go to the University of Chicago Medical Center and believe I'm in good hands. The doctor told me if this area of activity is cancer, I would have to have radiation. I am so scared. I live alone with my child and don't know what to expect. I thought everything was going ok. I haven't had any radiation or chemo. He hasn't suggested chemo. The only hot spot is this one area. 

If anyone could please help calm me down I would appreciate it. 

 

BunnyMom

joannaw81

hello

Hopefully it is not cancer however if it is than you have more treatment options since you never had radiation or chemo. Radiation is hard but doable. Radiation should take care of whatever is there. Good luck and keep us posted.

debbiejeanne

Bunnymom said:

2nd post tongue cancer

Matt,

thank you for the reply. I have not had radiation or chemo. I go to the University of Chicago Medical Center and believe I'm in good hands. The doctor told me if this area of activity is cancer, I would have to have radiation. I am so scared. I live alone with my child and don't know what to expect. I thought everything was going ok. I haven't had any radiation or chemo. He hasn't suggested chemo. The only hot spot is this one area. 

If anyone could please help calm me down I would appreciate it. 

 

BunnyMom

bunny, i'm saying a prayer

bunny, i'm saying a prayer for you to calm down and not worry until the doc says it is cancer and that its NOT cancer.  until the doc says it is, it is not.  i'm so sorry you are having these problems and are so scared, i understand how you feel as i've been there myself.  like metioned before, if it is cancer, you will have radiation as a tx option since you haven't had it before.  it is no fun but it works and you can do it.  please let us know how this turns out and come here to vent, cry, talk, ask questions, whatever, we will be here for you.

God bless you,

dj

jim and i

Welcome Bunnymom. So sorry

Welcome Bunnymom. So sorry you find yourself here. It is hard enough to be a single mom without delaing with cancer. I have no answers for you but I offer my prayers for it to be something other than cancer.

Blessings,

Debbie

donfoo

Bunnymom said:

2nd post tongue cancer

Matt,

thank you for the reply. I have not had radiation or chemo. I go to the University of Chicago Medical Center and believe I'm in good hands. The doctor told me if this area of activity is cancer, I would have to have radiation. I am so scared. I live alone with my child and don't know what to expect. I thought everything was going ok. I haven't had any radiation or chemo. He hasn't suggested chemo. The only hot spot is this one area. 

If anyone could please help calm me down I would appreciate it. 

 

BunnyMom

Welcome to CSN

Hi Bunny,

You have had cancer so IF this is cancer it is a recurrence most likely; highly unlikely but MIGHT be a new cancer. Big IF and until you get it fully diagnosed, you just try your hardest to think it is not over and over again.

We are no doctors here for certain. IF this new spot is cancer and a recurrence then the doctors will likely treat with both rads and chemo as the fact it spread means they did not catch it all so they will do all they can this time around. Again, I have ZERO medcal background but seen a lot come across the boards.

Good luck and just try your best to think the best outcome until seeing the doctor and results. Don

josh r.

fear

Hi Bunnymom,

It surely seems that you have gone through a number of hard and scary times and I like so many of our brothers and sisters here  can relate. As a 22 year plus survivor I can tell you how grateful I am to still be here, but I need to tell you that there have been, and hopefully will be more scary times that I am "concerned" about a pain, cough, lump, bruise  or just not feeling good because that is the nature of "The Beast"to hold on to us. As with most things that we fear they rarely come to fruition and we move on. If they do happen to be real challenges, we face them as you have and give it all the fight that you can and know that you have caring brrothers and sisters that will strand by you. God bless, josh r.

Bunnymom

josh r. said:

fear

Hi Bunnymom,

It surely seems that you have gone through a number of hard and scary times and I like so many of our brothers and sisters here  can relate. As a 22 year plus survivor I can tell you how grateful I am to still be here, but I need to tell you that there have been, and hopefully will be more scary times that I am "concerned" about a pain, cough, lump, bruise  or just not feeling good because that is the nature of "The Beast"to hold on to us. As with most things that we fear they rarely come to fruition and we move on. If they do happen to be real challenges, we face them as you have and give it all the fight that you can and know that you have caring brrothers and sisters that will strand by you. God bless, josh r.

Biopsy positive: Cancer

Saw my doctor today. I had a needle biopsy And it came back positive for cancer. I am having it excised next Wednesday. Then meet with radiation doctor and medical oncologist on May 6th. I'm sure I will start rad and chemo once I am sufficiently healed from the surgery. I want it out today!! knowing I have this cancer and ha paving to wait for surgery is hard. This will be my fourth surgery. 

I know rad and chemo will be hard. Very hard. The prospect of rad and chemo is quite frightening. But, I am begining to realize that this is my very best course of action to kill the cancer. I am lucky (if you can call it that) that it is localized in one area. 

Right now, I feel sick and tired. I just want to be well again and feel that my team of excellent doctors will help me through this. I know I have to walk through hell to get to the other side. 

thank you all for your kind and encouraging replies. please keep me in your prayers as I navigate this difficult time. 

 

Bunny

Bunnymom

jim and i said:

Welcome Bunnymom. So sorry

Welcome Bunnymom. So sorry you find yourself here. It is hard enough to be a single mom without delaing with cancer. I have no answers for you but I offer my prayers for it to be something other than cancer.

Blessings,

Debbie

Thank you Debbie

Biopsy confirmed cancer. I will have it excised on Wednesday. Then rad and chemo. 

 

Thank nk you for your prayers. 

 

Bunny

Guzzle

Bunnymom said:

Biopsy positive: Cancer

Saw my doctor today. I had a needle biopsy And it came back positive for cancer. I am having it excised next Wednesday. Then meet with radiation doctor and medical oncologist on May 6th. I'm sure I will start rad and chemo once I am sufficiently healed from the surgery. I want it out today!! knowing I have this cancer and ha paving to wait for surgery is hard. This will be my fourth surgery. 

I know rad and chemo will be hard. Very hard. The prospect of rad and chemo is quite frightening. But, I am begining to realize that this is my very best course of action to kill the cancer. I am lucky (if you can call it that) that it is localized in one area. 

Right now, I feel sick and tired. I just want to be well again and feel that my team of excellent doctors will help me through this. I know I have to walk through hell to get to the other side. 

thank you all for your kind and encouraging replies. please keep me in your prayers as I navigate this difficult time. 

 

Bunny

Thinking of You

Bunny, I have just finished week 1 chemo/rad. All ok so far. Let me know if I can be of any help. Sorry for your trouble. G.

debbiejeanne

Bunnymom said:

Biopsy positive: Cancer

Saw my doctor today. I had a needle biopsy And it came back positive for cancer. I am having it excised next Wednesday. Then meet with radiation doctor and medical oncologist on May 6th. I'm sure I will start rad and chemo once I am sufficiently healed from the surgery. I want it out today!! knowing I have this cancer and ha paving to wait for surgery is hard. This will be my fourth surgery. 

I know rad and chemo will be hard. Very hard. The prospect of rad and chemo is quite frightening. But, I am begining to realize that this is my very best course of action to kill the cancer. I am lucky (if you can call it that) that it is localized in one area. 

Right now, I feel sick and tired. I just want to be well again and feel that my team of excellent doctors will help me through this. I know I have to walk through hell to get to the other side. 

thank you all for your kind and encouraging replies. please keep me in your prayers as I navigate this difficult time. 

 

Bunny

bunnymom, you have every

bunnymom, you have every right to be sick, tired and scared.  you've just been hit with a boulder.  all of us felt that way when we got the news.  and it being a second time, makes that boulder even bigger than the first.  please just know that you will come thru just as many before you have.  we will be here for you to help you along the way.  you will never be alone!

Go bless you,

dj

Bunnymom

Guzzle said:

Thinking of You

Bunny, I have just finished week 1 chemo/rad. All ok so far. Let me know if I can be of any help. Sorry for your trouble. G.

Thinking of you too

 

Thank you so much. Please stay strong as we all must do. I know this can be beat and YOU WILL beat it too

Bunnymom

Results of Friday's (April 25, 2013) needle biopsy show cancer. Hate this thing. 4th surgery to remove it is on Wednesday, April 30th. I was told I needed radiation but may also do chemo to give it the full treatment. 

Meeting with oncologists on May 6th to discuss the treatment plan. 

Healthy (before this!) female. Non- smoker, almost no alcohol. Not in high risk group!!!! Lots of different emotions. thank you all for being here.