Newly diagnosed SCC unk Primary so far Help?

kdot2003

Hi, new here.  48yo female, west of Atlanta, GA.   I'm learning all I can.  I have SCC unk primary.  I have an appt with CTCA next Friday for evaluation, tests etc.  I had a cervical lymph node level II biopsied that came back cancer.  I also had ThyCa in 2003 but this seems to be unrelated although I had RAI with the thyroid.   I am just scared and worried of course.  I am a nurse but a labor and delivery nurse.  I am most scared of losing body parts for instance my tongue, my vocal cords, my teeth etc.  Maybe that is irrational.  I think I would rather die than lose my tongue.  Anyway if anyone has some words of wisdom or has recently had the same thing I'd love to chat with you.  Thank you.

wmc

Welcome to the H&N Group

Welcome to the group no one really wants to be in, and sorry you need to. My best advice is never give up and stay hydrated. When you go to your doctors, take someone with you to help listen, and write down all your questions and leave room for answers. Just hand it to the doctor, because he will say something that will throw you and you can go blank. As for losing your tounge or voice, you said you would rather die. You will change your mind real fast on that. I new I had a tumor and even saw the photo of it. It was laying on top of my left vocal cord and effecting my speach. I did lots of research and new where I would go to have the surgery and even the doctor I wanted. I felt I was ready and ever knew I might loose my thyroid  but what the hech I have been taking thyroid since I was 12, so I met with a tumor board. I have GURD and sever COPD, but ready to get down to business and get this over. The doctor came in and said,"your lungs are to bad that you won't survive radiation or surgery". I was not ready to hear that. They did give me one choice, they remove my larynx and I breath out my neck the rest of my life, or they can't do anything as it is an 8 to 15 hour surgery. I answered him with ok lets get it scheduled to get it done. It was not a hard dission to make. To live or not, was the question. When they took my lerynx they got all of the 3cm x2.5cm tumor and 86 lymph glands leval II ~ V on both sides of my neck. From the time he told me to when I could have the surgery was three weeks. I had to wait three to make sure I did not take asprin or motron  which could thin my blood.  Best dission I ever made. Yes it is a major change in life, but I have life. They put in a prosthesis and a TEP so I can talk. I can't smell, and you don't really go in water but I an two years post tomorrow, and have a long future to look foward to. 

The point you are at is the unknown and scarry part. When treatment starts it can be really rough to go through. Doctors say it is the second worse one there is. The good news is, it is very beatable, and you are not alone in this.  You will have questions and I never had chemo or radiation, but the others have and can answer just about anything. Get an attitude you will beat this, and you will. You just take one day at a time, and you will get through this.

Bill

CivilMatt

welcome

Kdot,

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

Try not to worry, you don’t have much information yet and who knows where your brain may wonder. 

I had stage IVa, scc, bot, 1 lymph node & hpv+ (surgery, rads & Erbitux) and even with the tongue surgery it is better than ever.

Words of wisdom……start drinking water and swallowing…….if you go through radiation you will understand.

Good luck,

Matt

MrsBD

Newly Diagnosed

Waiting is so difficult. We've all been there! The first reaction is to Google everything, but all that does is scare you half to death. Many of the websites are older and you will find much progress has been made in treating head and neck cancer in the last few years. I had Stage IVa squamous cell carcinoma at the base of my tongue. I thought for sure I'd lose my tongue, however, they didn't do any surgery. The treatment was radiation and weekly infusions of a monoclonal antibody. In a few days, I will celebrate one year since the treatment ended and I'm doing great. The people on this site will answer your questions, give excellent advice, and be your biggest cheerleaders. 

Kent Cass

Don't worry...

Know it's easier said than done- not to worry, but at this time you don't know any specific to worry about, other than you had a lymph come back Positive. You are going thru the toughest time- so many unknowns, and one can't help but let the worst-case enter the mind. 

Unknown Primary means no tumor has been found, so that all but eliminates radical surgery. I was also unknown Primary, and that just meant they had to zap me most everywhere with the rads (20 places/session). It's in the lymph system, and your body did you a favor by the node enlargement= likely caught early. 

Odds are you're just looking at C&R, like most of us have gone thru and survived just fine, and being close to a large city like Atlanta means you'll be under good care, so it's gonna be okay. Seriously, you don't have any real worries until you get the specifics of the scans, etc., and with H&N you'll likely fall into the 95% survival catagory.

kcass

ratface

Kent Cass said:

Don't worry...

Know it's easier said than done- not to worry, but at this time you don't know any specific to worry about, other than you had a lymph come back Positive. You are going thru the toughest time- so many unknowns, and one can't help but let the worst-case enter the mind. 

Unknown Primary means no tumor has been found, so that all but eliminates radical surgery. I was also unknown Primary, and that just meant they had to zap me most everywhere with the rads (20 places/session). It's in the lymph system, and your body did you a favor by the node enlargement= likely caught early. 

Odds are you're just looking at C&R, like most of us have gone thru and survived just fine, and being close to a large city like Atlanta means you'll be under good care, so it's gonna be okay. Seriously, you don't have any real worries until you get the specifics of the scans, etc., and with H&N you'll likely fall into the 95% survival catagory.

kcass

Stick out your tongue

And spit at the face of cancer because you are going to be allright. Unknown primaries are statistically at the base of the tongue or in the tonsil on the same side as the lymph node.  The tonsils get pretty much obliterated during treatment but you don't really need them.  Have you had a PET scan yet? It may narrow the search down for you. In some cases they never find the original site and it really dosen't matter as it is still very treatable. Seems like  you will keep your tongue for future face making. Unless you have very bad teeth there is no reason to remove them. You will see a dentist for an evaluation. The aim is to remove any unhealthy teeth because after treatment extractions are more difficult and bring some complications. Better to deal with that now and yes you do have time to get that done if required saving you anguish post treatment. The vocal chords are visible on a scope so that is unlikely. You seem to have a run of the mill H&N cancer, small tumor caught early,  and that is really great news for treatment. All the best and welcome.

phrannie51

Hi KD...and welcome to the....

best forum on the internet!  The people here are very knowledgeable, and very supportive....you'll find a soft place to land here.

Pretty much all that I would have said if I'd gotten here first has been said.  An unknown primary just means they'll radiate all the likely places.  Your body might have already fought off the main spot, and now your lymph nodes are trying to clear out the stray cells. 

Treatment is tough...but you'll get through it...come out the other end a little changed....but nothing so drastic as to want to die over it.  Teeth are something you do want to get looked at because it is difficult to go through extractions after radiation...lot of hoops to get through. 

Everybody is sent reeling when they first hear the diagnosis....It took me weeks to put my name and cancer into the same sentence....they simply didn't go together.  This first waiting period is the hardest emotionally....once treatment starts, you get to be a participant rather than a bystander, and that helped me a lot. 

As said above....eat a lot now, you will lose weight....once things get rolling, eat all you can, swallow and remember to drink water and stay hydrated....those will be your main mission in life for a while.

p

Barbaraek

Kdot

I posted a reply late the other night and it must have gotten lost in the ethernet...

I will add my welcome to the group no one wants to join, but is glad they found. You will find awesome support here. I read one of your other comments and as hard as it is, try not to obsess about the cancer. It's so easy to have worrisome thoughts playing over and over again in your mind like a broken record (wow, dating myself here!) you have to find a way to break that loop. Try and do something you enjoy, or do some physical thing like take a walk or bike. Your mind needs a respite from all the racing it will do. Try not to jump ahead to worst case scenarios before you have information. Don't get caught up in too many statistics on the web and always remember you have people here on this board cheering and praying for you.

Barbara

glend04

my chemo start on oct. 8 & radiotherapy is on oct.12

I was diagnosed NPC  stage  T2N2M0. I have 7 session of radiotherapy & chemo. Im alaone working outside my country but im still positive i can pass this trials. GOD bless us all.

Barbaraek

glend04 said:

my chemo start on oct. 8 & radiotherapy is on oct.12

I was diagnosed NPC  stage  T2N2M0. I have 7 session of radiotherapy & chemo. Im alaone working outside my country but im still positive i can pass this trials. GOD bless us all.

Not completely alone

Even though we are not right there physically, we are walking with you metaphotically- please post your questions and concerns and we'll be there to answer and support. Good luck on the 8th! Consider it day #1 of recovery!

 

Barbara

avisemi

Kdot,
You can do it! You can

Kdot,

You can do it! You can do it! and we are here to support you! I remember when my husband was diagnosed. The waiting is the worse. Waiting to find out how bad it is, what the treatment will be, how he will react to the treatment, if it would work, etc. Along the way someone told me to stop waiting for and just focus on each step. This helped me feel less overwhelmed and scared. I could not know what what was coming the next day but I knew what i had to do that day. Step by step. and we are here to help make those steps a little easier.

I wish you the best

kdot2003

Thanks All

Thank you all for your kind words.  This is actually my second bout with Cancer.  I had ThyCa in 2003 but that didnt scare me like this..of course.