Newbie..SCC of nasal cavity

Kritter

Hello to all.. New to this site. Glad I found this site. I have been diagnosed with Stage 3.. SCC of the nasal cavity with invasion into the ethmoid sinus. Tumor size of a large lemon/tennis ball. Been told this is a rare cancer. Does anyone know anything about this type of cancer?  Thanks so much!

Goyca

Hello Kritter.
sorry you had

Hello Kritter.

sorry you had to find us.

I'm Goyca, I have Esthesioneuroblastoma, also known as Olfactory Neuroblastoma,a very rare uncommon tumor of the upper nasal cavity and anterior skull base. I'm not sure if its similar to urs . So the tumor was in my left sinus area, and my left nose and reaching base of skull. Had a craniofacial resection surgery took all tumor out and now radiotherapy treatment... Don't worry, your doctors will definitely have a plan for you.. Did they decide any steps?

 

no matter what stay strong, a lot of ppl on this forum will help u with advice and ideas, and u will make it through.

stay strong and kick the C in the butt.

keep us updated

 

God bless,

Goyca.

CivilMatt

welcome

 

Kritter,

Welcome to the H&N forum, so sorry you qualify to be here.

I was stage IVa scc, bot, 1 lymph node (surgery, rads & Erbitux).  Different than yours, but we all follow a similar path of treatments with radiation being the most common to most.

For info you may take a look at the superthread, it is full of the details about our condition and other good stuff.

You may have a plan already and will start soon, it can be a rough road, but many of us have made it and so can you.  Feel free to ask any questions.  With any luck, someone with similar condition to yours will chime in.

Good luck,

Matt

 

phrannie51

Hi Kritter....

and welcome to this forum.........the best one on the internet!!  A lot of us know about SCC.....where it happens to pop up on our heads and necks varies, and I'm sure someone one here has had it in the sinus.  Have they started talking about what type of treatment you will have?  Surgery?  Chemo?  Radiation?

p

debbiejeanne

hello and welcome.  I'm so

hello and welcome.  I'm so sorry you need to be here.  you've found a great place for information, tips and tricks, encourgement and anything else you may need.  i hope you will hang around.  read the superthread, it has tons of great information.  then come back here to ask any questions or make any comments.  let us know what your tx plan is once you get it and we will be here to cheer you on.

God bless you,

dj

Kritter

Goyca said:

Hello Kritter.
sorry you had

Hello Kritter.

sorry you had to find us.

I'm Goyca, I have Esthesioneuroblastoma, also known as Olfactory Neuroblastoma,a very rare uncommon tumor of the upper nasal cavity and anterior skull base. I'm not sure if its similar to urs . So the tumor was in my left sinus area, and my left nose and reaching base of skull. Had a craniofacial resection surgery took all tumor out and now radiotherapy treatment... Don't worry, your doctors will definitely have a plan for you.. Did they decide any steps?

 

no matter what stay strong, a lot of ppl on this forum will help u with advice and ideas, and u will make it through.

stay strong and kick the C in the butt.

keep us updated

 

God bless,

Goyca.

Hello Goyca

Thank you for the comments, and it might be a blessing in disguise that we all found each other on this website. To help one another beat this ugly disease. Yours sounds similar to mine. I am not real sure what they are calling mine yet. So far I know it is a large tumor in my nasal cavity that has invaded the ethmoid sinus and it has grown through the cartlidge of my nose. ( Forgive my spelling and typos) 

I hope the radiation doesn't bother you too much. And your treatments work!.. So far only spoke with the Oncologist and Chemo team, but can't remember what they are going to use, but i think it is the Erbitux.. they did say I may get a horrible rash, but that would be a good thing. They chose not to do surgery to remove the tumor as it is very large, going to try to shrink it and then reconstruct my face later. I will see the radiologist on September 5th. 

Only fun part I am experiencing so far is the Doctor told me to gain about 30 pounds.. so eating and enjoying..  that way when I lose weight it won't be so bad for me he said.

Keep strong!

Kritter

Kritter

CivilMatt said:

welcome

 

Kritter,

Welcome to the H&N forum, so sorry you qualify to be here.

I was stage IVa scc, bot, 1 lymph node (surgery, rads & Erbitux).  Different than yours, but we all follow a similar path of treatments with radiation being the most common to most.

For info you may take a look at the superthread, it is full of the details about our condition and other good stuff.

You may have a plan already and will start soon, it can be a rough road, but many of us have made it and so can you.  Feel free to ask any questions.  With any luck, someone with similar condition to yours will chime in.

Good luck,

Matt

 

Hi Matt

Thank you for your words of encouragement. I didn't want to research on the internet as there is so much mis-information on there. So when I found this site I knew it would help me feel better to talk with others who are going through the same thing.

From what I gather my cancer seems to be a rare type. Not many are diagnosed with it. And it affects more men than women. 

Did I understand right? You made it? Are you through with treatments?  I will check out the superthread, thanks for the advice.

Stay strong.

Kritter

Kritter

phrannie51 said:

Hi Kritter....

and welcome to this forum.........the best one on the internet!!  A lot of us know about SCC.....where it happens to pop up on our heads and necks varies, and I'm sure someone one here has had it in the sinus.  Have they started talking about what type of treatment you will have?  Surgery?  Chemo?  Radiation?

p

Hi phrannie51

As I said in my other replies, I am just starting to speak with different Doctors to get a plan of action in motion. I guess things take time, and that is okay as others need help as well.  I am pretty sure I can beat this, as my Mama beat her lung cancer and my brother beat his throat cancer. Thank you for the welcome and how are you doing? 

Stay strong!

Kritter

Kritter

debbiejeanne said:

hello and welcome.  I'm so

hello and welcome.  I'm so sorry you need to be here.  you've found a great place for information, tips and tricks, encourgement and anything else you may need.  i hope you will hang around.  read the superthread, it has tons of great information.  then come back here to ask any questions or make any comments.  let us know what your tx plan is once you get it and we will be here to cheer you on.

God bless you,

dj

Hi DJ

Love your name.. my name is Debby Jean.. but all my friends call me Kritter.. not sure if I look like one or act like one. but the nickname stuck. 

Looking around on the site before I joined, made me join actually. There seemed to be so many people here who are kind and understaning and above all .. Brave fighters!.. I will post my treatment plans as I talk to my Doctors. And read the superthread on here as well.. 

How are you doing? 

Stay strong!

Kritter

CivilMatt

Kritter said:

Hi Matt

Thank you for your words of encouragement. I didn't want to research on the internet as there is so much mis-information on there. So when I found this site I knew it would help me feel better to talk with others who are going through the same thing.

From what I gather my cancer seems to be a rare type. Not many are diagnosed with it. And it affects more men than women. 

Did I understand right? You made it? Are you through with treatments?  I will check out the superthread, thanks for the advice.

Stay strong.

Kritter

info

Kritter,

Yes, I am finished!

You may click on my name or picture to find more info about my H&N experience.

Matt

wmc

Welcome to the H&N

Welcome to the group, and i'm sorry you need to be here. I was SSC T3,N0,M0 of the larynx. [Just above, supraglottic] and had surgery to remove my larynx and tumor, along with radial neck dissection on both sides to remove 86 lymph nodes. Never had chemo or Rads. It is a bumpy road you will be going down but there is light at the end. Many on this site have gone down and it is doable. I would sugest if you have questions for your doctors to write them down. The Dr will say something and you seen to forget your questions. Take someone with you. Two sets of ears help as well. I handed my questions to my Dr and he wrote the answers and gave it back. You can also record the amswers on your smart phone. You will have good and bad days and some will get you down. Just come here and ask questions or just write it down on a post and vent. That helps just getting it out. It's nice to be able to tell someone how you feel, and they really do understand. We've all been there and do understand. Just knowing you're not alone in this helps. Remember you will beat this, and yesterday doesn't matter only today does. You take one day at a time.

We'll keep you in our thoughts and prayers.

Billl

debbiejeanne

Kritter said:

Hi DJ

Love your name.. my name is Debby Jean.. but all my friends call me Kritter.. not sure if I look like one or act like one. but the nickname stuck. 

Looking around on the site before I joined, made me join actually. There seemed to be so many people here who are kind and understaning and above all .. Brave fighters!.. I will post my treatment plans as I talk to my Doctors. And read the superthread on here as well.. 

How are you doing? 

Stay strong!

Kritter

hey, Debby, you are the 2nd

hey, Debby, you are the 2nd Debby Jean I've met here.  I am doing fine.  It has been 2.5 yrs since surgery and all is good.  thank you for asking.

dj

Kritter

wmc said:

Welcome to the H&N

Welcome to the group, and i'm sorry you need to be here. I was SSC T3,N0,M0 of the larynx. [Just above, supraglottic] and had surgery to remove my larynx and tumor, along with radial neck dissection on both sides to remove 86 lymph nodes. Never had chemo or Rads. It is a bumpy road you will be going down but there is light at the end. Many on this site have gone down and it is doable. I would sugest if you have questions for your doctors to write them down. The Dr will say something and you seen to forget your questions. Take someone with you. Two sets of ears help as well. I handed my questions to my Dr and he wrote the answers and gave it back. You can also record the amswers on your smart phone. You will have good and bad days and some will get you down. Just come here and ask questions or just write it down on a post and vent. That helps just getting it out. It's nice to be able to tell someone how you feel, and they really do understand. We've all been there and do understand. Just knowing you're not alone in this helps. Remember you will beat this, and yesterday doesn't matter only today does. You take one day at a time.

We'll keep you in our thoughts and prayers.

Billl

Thanks

Thanks for the reply and you are right, I do seem to forget what the Doctor has said. I guess I am still in shock and don't believe this is happening to me. I will take your advice on bringing a tablet with me. My husband has been with me for my appointments and he is blown away as well. I am so thankful for him, being able to be with me. 

I am sorry you had to go through what you have. Cancer is such an ugly disease. No one should have to deal with it. But in life there is good and bad. 

I just don't want to visit * Dr. Google or Dr. Bing * to find info on my type of cancer. But it does seem like it is rare. I had a rough day today so I stayed to myself, just watching TV and resting. I am sure it will get worse, but I have now found this site and the wonderful people on here to help. 

Thanks so much for your thoughts.. 

Kritter

wmc

Kritter said:

Thanks

Thanks for the reply and you are right, I do seem to forget what the Doctor has said. I guess I am still in shock and don't believe this is happening to me. I will take your advice on bringing a tablet with me. My husband has been with me for my appointments and he is blown away as well. I am so thankful for him, being able to be with me. 

I am sorry you had to go through what you have. Cancer is such an ugly disease. No one should have to deal with it. But in life there is good and bad. 

I just don't want to visit * Dr. Google or Dr. Bing * to find info on my type of cancer. But it does seem like it is rare. I had a rough day today so I stayed to myself, just watching TV and resting. I am sure it will get worse, but I have now found this site and the wonderful people on here to help. 

Thanks so much for your thoughts.. 

Kritter

Thank you

I did research a lot on what I had and I was very lucky. I was prepaired for what was to come, which helped me. I was pretty sure I was going to lose my voice so I recorder it so I can go back and remember what I did sound like. I can still talk, they put in a TEP in my throat and it diverts the air and I can talk. I sound just a little horse but it is my voice. Yes it was life changing for me, but I still have a life and a second chance. When my doctor came in and said I could not survive the surgery or radaition because my lungs [COPD] are so bad, my heart stopped. He then said they could do a trach and remove my larnyx and I would breath through my neck the rest of my life. I said schedule the surgery. I'm going on 11 months cancer free.

You will get through this too. Just get the attitude, you will have lots of suport.

Thanks for your concern

Bill

Kritter

wmc said:

Thank you

I did research a lot on what I had and I was very lucky. I was prepaired for what was to come, which helped me. I was pretty sure I was going to lose my voice so I recorder it so I can go back and remember what I did sound like. I can still talk, they put in a TEP in my throat and it diverts the air and I can talk. I sound just a little horse but it is my voice. Yes it was life changing for me, but I still have a life and a second chance. When my doctor came in and said I could not survive the surgery or radaition because my lungs [COPD] are so bad, my heart stopped. He then said they could do a trach and remove my larnyx and I would breath through my neck the rest of my life. I said schedule the surgery. I'm going on 11 months cancer free.

You will get through this too. Just get the attitude, you will have lots of suport.

Thanks for your concern

Bill

Amazing

Reading what you have went through is amazing that you are an inspiration to so many people on here. Having your own voice I am sure is still a blessing, even though it chaned a little.

Like you I have COPD as well, but the Doctor has said mine was more bronchial than emphysema. They haven't said it would be an issue in my case, and I hope it doesn't affect my treatment. 

Against my better judgement I did some research today and finding very little info on my type of cancer. All I can seem to find out is that it is rare, and I know I am lucky as my PET scan showed no further instances, only in my nasal cavity and into my ethmoid sinus.

Seems when I was first diagnosed my cell never stopped ringing, now not so much anymore. I guess they don't really know what to say, and I don't blame them. I have been dealing with cancer since 2011 when my Mama was diagnosed with her lung cancer, so I am no stranger to it's ugliness.

I decided I have to beat this or I am going too..as I still need to take care of others who need me, and besides I love driving my convertible with the top down, hair blowing in the wind and loving life itself.

I hope you keep doing as great as you are.

Kritter

 

Kritter

debbiejeanne said:

hey, Debby, you are the 2nd

hey, Debby, you are the 2nd Debby Jean I've met here.  I am doing fine.  It has been 2.5 yrs since surgery and all is good.  thank you for asking.

dj

WOW

I read what you have been through and WOW are you an inspiration as well.. Keep doing great!. I just hope I have as sweet of a smile on my face as you do in your picture when I get through this. 

Kritter

Kritter

CivilMatt said:

info

Kritter,

Yes, I am finished!

You may click on my name or picture to find more info about my H&N experience.

Matt

Keep inspiring us

Oh, you did go through quite a lot, that gives me hope that I can beat mine. My family is joking with me that I have always been rare and now I get a rare cancer, but they say it with good intentions. So I do have hope and a crazy family to help me along, and the people on here to help as well. 

Kritter

TracyLynn72

Welcome

to the group that no one wants to HAVE to join.  We're glad to have you in our little family   I had mucoepidermoid carcinoma (MEC)  of the lower left jaw area.  A girl that I met (through family and friends..God places the right people in your path) had MEC in her sinus cavity.  The doctors had never seen MEC there and she had a pretty sizable tumor.  She had surgery to remove it and got clear pathology margins so she had no further treatments.  She's over a year and a half cancer free now!  While it may not be exactly what you have going on, I just wanted to let you know about her and give you a positive story   My doctors used the word "rare" alot with my situation and my family was like "well, of course it is" jokingly with me too.  We just are a rare group

Kritter

TracyLynn72 said:

Welcome

to the group that no one wants to HAVE to join.  We're glad to have you in our little family   I had mucoepidermoid carcinoma (MEC)  of the lower left jaw area.  A girl that I met (through family and friends..God places the right people in your path) had MEC in her sinus cavity.  The doctors had never seen MEC there and she had a pretty sizable tumor.  She had surgery to remove it and got clear pathology margins so she had no further treatments.  She's over a year and a half cancer free now!  While it may not be exactly what you have going on, I just wanted to let you know about her and give you a positive story   My doctors used the word "rare" alot with my situation and my family was like "well, of course it is" jokingly with me too.  We just are a rare group

Thanks

I agree that no one wants to be here, but this site is a blessing to all of us. Thanks for letting me know about this, as no one seems to believe me when I tell them I have cancer in my nasal cavity. From what I read so far only about 2,000 people are diagnosed with what I have a year in the USA. Especially when I tell them the size of the tumor, they are blown away.

Again thanks for the positive story and sorry you are dealing with or dealt with this as well. I am trying to stay positive, but woke this moring with another infection, or could be a cold. I hope not as it may delay my treatment. Seeing the Radiologist this Friday. 

Agreed, we are a * rare* group who won't let Cancer beat us!

Kritter

Hondo

Hi Kritter

Sound like NPC and there are a lot of us here on the site that had it and are survivors. They say it is rare but I know of over 20 people now who had this so I don’t think it is as rare as they say. You are in the right place for support as many of us stay behind to help others who are just finding out they have this stuff. To me the biggest help is in prayer.

Tim Hondo     

Kritter

Hondo said:

Hi Kritter

Sound like NPC and there are a lot of us here on the site that had it and are survivors. They say it is rare but I know of over 20 people now who had this so I don’t think it is as rare as they say. You are in the right place for support as many of us stay behind to help others who are just finding out they have this stuff. To me the biggest help is in prayer.

Tim Hondo     

To Hondo

A very big * Thank you* to you and all who have stayed on to help us newbies!

Ok I got on the medical website to access my medical records. The Memorial Hospital were I am being treated offers us that service. My diagnosis is ( Primary malignant neoplasm of nasal cavity ) it has not spread to lymphs, throat or beyond. Only invasion to my ethmoid sinus. 

I will look into NPC as the treatment may be similar. Seeing the radiologist Friday and maybe will be able to learn more from him. 

My ENT did say a mask..and I am sort of worried as I tend to be claustophobic.

Prayers are wonderful and I am on several prayer chains as well.

Kritter