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Just Starting the Journey

jthornsbury
Posts: 42
Joined: Feb 2013

The past three weeks have been just crazy and I feel so out of control! Still in the staging process but looking at III tonsil SCC with left nodule involvment.  I am just so scaried...my kids come home from school and I have to go to our bedroom because I can't stop crying. My wife has been incredible and I have just been on information overload...trying to find something good in all of this! Have a major scan in two days to make sure it has not spread to the lungs and then have a followup with ENT.  When finally get a treatment course will probably get a second opinion at MDA in Houston.  so many questions and so many fears. 

Fire34
Posts: 353
Joined: Feb 2010

Take one step at a time. I was IVA SCC unknwown primary, right side node involvement HPV+ . Not too scare you but my treatment consisted of 8 weeks of induction chemo with Erbitux, Taxol . followed by 5 alternating weeks(one off one on) of concurrent chemo/rads(at the same time) with twice daily radiation. 3 1/2 years later still here.  My wife was the basket case and like you probalby I would not be able to make it with out her.

I didnt worry about any second opinion I went straight to the U of Chicago with all of my smears biopsies scans etc and let them make up my treatment plan. I had no confidence in my original ENT that is why I left the small town where I am from and went straight for the big guns.

The superthread here has plenty of answers to probalby a majority of the questions you may have. There ar plenty of us here that have been thru what you are going thru and will also offer support, I wish like you, I would have found this site prior to going thru treatment instead of after I was finished, Again you have come to the sight spot. Wishes & Prayers on your treatment decsion and upcoming recovery

Dave

sassysrice's picture
sassysrice
Posts: 117
Joined: Nov 2012

Sorry to hear about your diagnosis, but welcome. You found an awesome place. I have been coming here since Nov 2012 gor my boyfriend. He has SCC of base of tongue and 1 node. We just finished treatment Jan 31. It will be a rough road to travel, but you can do it. Have your wife come on too. It has been very rewarding and helpful for me as a caregiver. I laugh, I cry and I sympatize with everyone here. I truly call everyone here my extended family.

Keep positive and keep putting one foot in front of the other.

I don't know how old your kids are, but my newly 13 year old daughter has handled well after the inital, will he die, will you get cancer too questions.

Stay strong

Sue

phrannie51's picture
phrannie51
Posts: 3854
Joined: Mar 2012

nobody wants to join.  I can tell you right up front that one thing good in all this, is that you're about to meet some of the most amazing people in the world, right here in this group!

You are at the scariest part of this journey....the beginning is very frightening...I know I couldn't put my name and the word cancer into the same sentence....it simply didn't fit together.  This part of the road is also the emotionally draining, because you are in a never ending "hurry up and wait" mode.  Soon enough you'll be actively fighting the disease, which (at least for me) allowed me to join the battle and let me feel like I was doing something about it!

Don't worry about the PET scan (I know, easier said than done)....but the chances are way in your favor that there has been no spread of the disease....it also allows them to see precisely where, and how big the cancer is.....it's very easy to get, tho....I've had two and slept thru both of them.

I was diagnosed with NPC (Nasopharyngeal Carcinoma) last March 5th....finished chemo and Radiation in June, and had my last chemo the end of August....it's not a walk in the park, but it's SO doable!!  I've watched others come in since I started treatment, and guess what?  Everyone of them has made it thru....you will too! 

Two pieces of  advice I received when I got here.....Stay OFF the internet....what you're reading may be out of date, or just plain wrong.  This cancer is very survivable.....and two....stick around here, ask any questions you have.  The practical knowledge of those who have been thru it will prove to be invaluable once you begin treatment. 

It's going to be ok!!  YOU are going to be ok....

p

 

cureitall66's picture
cureitall66
Posts: 879
Joined: Aug 2012

The worst part is hearing the word "cancer", we all know this. But, soon you will be having so many appts that you will be spending all of your energy running around to them. Be sure to take someone with you to take notes.

My loved one (Male age 51) was dx in August '12 with Stage IV SCC BOT (Base of Tongue), with 2 lymph nodes involved, HPV+ (yes, you will most likely have biopsy done to determine if you are positive). We just finished our tx around the first part of December. We are 10wks post. Our tx consisted of 7 weeks of  concurrent radiation and chemo ( Carboplatin & Paclitaxel). This is completely do-able!

As Phrannie said, do not spend your time searching the internet. You will find nothing but outdated statistics there. We are all different and react differently to tx. No one person will be the same. But this cancer is very much survivable. You will find many long time survivors on this forum. Some as far back as 20yrs that have continued to stay on here for us "newbies". You will find this forum very imformative and welcoming. Do not be afraid to post your fears, concerns, or questions to us. Most will have an answer for you. You may want to ask your wife to join on to get the support in helping you through this journey. We refer to everyone here as our H & N family (Head/Neck) and we all have to "ride the same bus" whether we like it or not to get through our journey. We may not be on it all at the same time, but we all have to ride it.

I encourage you to stay with us here..you will be happy you did.

God Bless,

Cureitall  

Skiffin16's picture
Skiffin16
Posts: 8105
Joined: Sep 2009

As others have said, take it as it is... Treatment is tough but doable, and recovery and survivorship is very high.

I myself was STGIII SCC Tonsils and a Lymphnode HPV+, back in January 2009. Like you, hearing you have cancer is like getting slugged in the gut. All I thought about was pale frail gray haired (if any) people wasting away to nothing...far from the truth. If nothing else from all of this, you'll get an education on cancer and surviving.., and if you are like many... You'll find somewhere along the line, that what was once big, isn't...that which was small, is now huge. You'll appreciate things that you have long let slide... You'll figure out what truely is important.... It's a fast learning curve.

Like mentioned, my treatment also consisted of tonsils coming out, port installed, PET scan to determine the target areas...nine weekss of three cycles of Cisplatin, Taxotere and 5FU, then an additional seven weeks of concurrent weekly Carboplatin, with the 35 daily rads just for the Halibut... (sorry, I like to fish)... susel

Anyways, all of that was back in early 2009..., been clean and clear since... No use going into all of the details just yet...., you'll get plenty of info as you go along.

Best ~ John

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

JT,

Welcome, you are amongst friends who will help you through your journey. everyone one of us, or as in my case, my husband has been through what you are going through. So far, you are doing just fine. It's scary. My husband has/had left tonsil cancer, it metastisized to his lymph nodes, they removed 29, 3 cancerous and 2 of those we're broken open so his diagnosis is stage IV. 

 After two surgeries (10 hrs), 6 weekly chemo's and 30 sessions with the radiation team, 1 week in the hospital for dehydration, and some nutrition help, he is looking pretty good. He was diagnosed in October, and this time has flown by. It will for you too.

as for the kids, I'll share what my Dad told me when I was fighting cancer in 2004, he told me to look in my kids eyes, fight for them, fight to win, don't take no for an answer. It helped me, I stopped crying and started fighting. I hope this helps you in someway. This is a time when you want to set the example for them, and let them help you.. Find ways to let them fight with you. After being on both sides.. It was harder to watch than be the patient. I know you'll do well,  your love for them shines through your words.

keep us posted.. We are here.. 

Kari

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

Oops - I hate when I double post.. Pardon me.

Dr.Ed
Posts: 22
Joined: Jan 2013

how could you not be. The docs are just doing what they need to be doing to determine the best treatment so go with the flow about the tests. I've gotten used to PET and CAT scans (and blood tests) and all they can do is help. I also had chemo then 35 days of radiation and some lymph nodes removed. I had a "support" friend tell me he was glad he got this when he did, and that I was in better shape than he, because treatment keeps advancing, and its better today than when I got it (Dec, 2012).

When I was diagnosed my wife contacted Can-Care and they put us in contact with another man who had gone thru what I was about to, you and your family can use support.I think if your comfortable with your team, and they are giving you hope stick with them, but I will say I live in Houston and went to MD Anderson, and its been a positive experience (that I wish I never had). I've only been on this site a few days but its already helped me immensely. I'm so glad you found it, there are great people with lots of information here. Be prepared for lots of new experiences that will seem scary too, but we all made it thru. We're with you 

Tim6003's picture
Tim6003
Posts: 1497
Joined: Nov 2011

I'm sorry you find yourself in this boat.  I used to post more than I do lately, I see a lot of new faces / names on here and I tell you I'm glad you and they found this forum, but my heart goes out to you all.

Not that this makes you feel any better, probably just adding to what others have said...but look around the forum at all the survivors of stage IV, look at the years they have been around.  Also, MD Anderson?  Wow for you, they are rated number 1 in the world of cancer.  Your young, your stage III (better than stage IV) your going to MD Anderson...and you know what else?  After you drag yourself through this serious boot camp you are about to go through..you will come out tough, lean and well.  You truly have much going for you.

As for the scared and crying...who wouldn't be.  I have five children ages 2-14 ....October 2011 I as dx with stage III base of tongue cancer with one lymph node (left side) invovled HPV+16 ....all I could think about was my young wife (whis is 11 years my younger) stuck with my five children and me not being around for them, broke my heart.  In the begining there is sooooo much wait and wait...it will drive you mad.  Telling my kids (around the family table) what I had after that same year we lost their uncle (my brother) and their Pa (my dad) to cancer was not easy.  In their little minds cancer was synonomus with dying ...heck, I probably thought as much too with my families recent decimation.  But here I am 1 year out from my last tx (January 2012) and all my scans are looking good.  However, I remember a few times going to the bathroom to turn on the shower just to cover my crying...it was a hard time in the begining..once you get to the treatments and start fighting..you will feel like you are doing something!!

Chin up, you will come out of this a winner !!  Hope you did not mind I also whispered a prayer for strength, faith, peace and well being for you and your family as you move forward.

Best,

Tim

Kent Cass's picture
Kent Cass
Posts: 1748
Joined: Nov 2009

Sorry you find yourself amongst us, but welcome to our little club of SURVIVORS. 

Realize you are experiencing the worst of times, so take a step back with a deep breath...The unknowns at the start of the H&N C experience are what make it the worst of times. This is 2013, and great advances have been made in the H&N field, and a major part of your Dr's responsibility will be to get you thru it all in an acceptable way, to you- all you have to do is keep your Drs informed on how you are physically doing, and they will do what it takes to make it all acceptable to you. And keep us informed so that we can provide any help and answers to questions that might come along your way. 

And, most importantly, realize as fact the little thought that was the foundation of my experience- you are gonna survive this thing (so get used to it!). Yes, you have C, and that's just about as serious a problem as there is, healthwise, but the odds on surviving H&N is really, really, great- 95% is an often given percentage. Once you accept the fact you have C, and that you will survive it, as you will, then what's next? Getting treatment started, then moving forward in the Positive with your Drs doing their things in blasting the heck out of the C inside you, and then live your 2nd chance at life. There's 15+ year Survivors here, along with a lotta people like me that are 4-years out of tx. I returned to work a month after my last Rad session, and that was in April of 2009. You will get there. Accept that as the fact it is-

Believe

kcass 

CivilMatt's picture
CivilMatt
Posts: 3094
Joined: May 2012

jthornsbury,

 

Welcome to the H&N forum, I am sorry you qualify to be a member.  The “something good” you are looking for, is your condition is very curable.  

 

Your initial reaction was experienced by all of us to varying degrees, the learning curve is fast, but it is necessary and fairly straight forward and easy.  Once you get your head wrapped around what has happened to you and your team (doctors) formulates a plan, you will get down to eradicating this intruder and then getting on with your life.

 

We are here to support you and answer any questions you have, also there are some big shoulders to cry on and many ears just to listen.

 

Life stays scary for a while, but take it from someone who was there, it really is doable and you learn to live with the changes.

 

Hoping for a smooth ride ahead.

 

Matt

 

Stage IVa, BOT, SCC, HPV+, 1 lymph node. 35 rads & 8 Erbitux

fishmanpa's picture
fishmanpa
Posts: 1134
Joined: Jan 2013

Hi J,

I saw the thread title and thought for a moment a bunch of people had responded to a thread I posted close to a month ago. The kind folks here have been awesome in helping me navigate through the often overwhelming maze of H&N cancer. 

Definitely seek a 2nd opinion! Confidence in your "Team" of doctors is paramount. I went from no team and one hand not sure what the other was doing to 6 specialists all together in the same room who knew ALL the details and agreed on direction. 

I read way too much as well and scared the bejeebers out of myself! Once I got over the initial shock of the seriousness of H&N cancer and after speaking with the survivors here as well as my team, I'm good. Refocus the fear into determination to fight. It certainly sounds like you have a family worth fighting for. If you need to read, come here ;) Yeah, the prospect of coughing up hairballs and getting "old lady chin" aren't the most pleasent things to read about and look forward to, but it beats 99% of what's out there on the subject of H&N cancer! ~lol~

My journey officially starts tomorrow with more surgery. They'll be removing the tumor ("Jack"... yeah I named it) and doing more biopsies to determine the primary site (currently unknown). Treatment will start in early March. Plan will be determined by what they find tomorrow.

Hang in there J... this is a club we're not happy about being in but you couldn't have come to a better place. 

"T"

jthornsbury
Posts: 42
Joined: Feb 2013

New Friends,

When I woke up this morning and began to read the replies from everyone -- I was overcome with a feeling that I am not alone in this fight.  I have my wonderful wife to walk with me but to hear all the words from those who have travel this path was such a blessing in a time of uncertainity and fear.  Thanks for welcoming the "newbie" into the community and I know that I will have many many many questions as I journey this path in the days, months and years ahead!  This morning I am so thankful to hug my two kids as they head off to school, listen to the birds singing out side and enjoy another day of life.

From a Grateful Heart,

Jon

donfoo's picture
donfoo
Posts: 1332
Joined: Dec 2012

Hi Jon,

Sorry to see you on the bus. I'm a newbie too, just started induction chemo last week, several cycles remaining with 7 weeks cocominant chemo-radio therapy. You sound very well positioned and have a solid set of next steps. Beyond that, you just have to dial back the unknown part. For some it is harder mentally than others but if you are a control type you just have to go loose on the reins as the journey is set and all you can do is intelligently nudge it along toward the best outcome.

This group represents one of the very best places to get real, practical, advice and feedback on all things related to HNC. 

Best to you and be well. don

 

btw - p - THIS is the internet too. :-)

Skiffin16's picture
Skiffin16
Posts: 8105
Joined: Sep 2009

Jon...

When you get a chance, check the SuperThread also..., many, many tips, links and contributions by the many that have been on here over time;

SuperThread

Best,
John

Matt29's picture
Matt29
Posts: 62
Joined: Apr 2012

First and foremost i was in your shoes back last April I was a newely wed married 2-12-11 me and my wife have been together for 7 years  my son was born 11-7-11 and a new father my son is now 15 months old i have my own company just moved into a bigger house it was actually in Nov 2011 that i found the lymph node swollen on my neck me like a lot of oither people don't want to believe its cancer i mean i'm 29 and the best shape of my life non smoker and don't drink much except sweet tea LOL owning a landscaping company for 10 years will do that for you i was probably one of the youngest to be diagnosed on the board and i starting searching the internet bad move lots of things are outdated i soon realized that i had tonssil stage 4 a 3 lymph nodes involved on same side of neck HPV postive which gives a great cure rate now for me after the scans and going to the dentist to find out that not only do i have cancer but i would have to have 23 teeth extracted they weren't horribel but they had issues that was hard to swallow but i just chalked it up to part of the treatment so i had the extractions and the port put in.I also went to MD Anderson but i went to the one in Orlando they were awesome and very caring no complaints.My advice to you is accept that this is a speed bump in your life and get over the hump bull doze it out of the way,thank about your wife and kids your friends stay active as much as you can walks around the neighrbhood,excerise buy some exercise bands and use them every morning you want to keep you muscle tone its a pain to get back i mean i'm getting there slowly but sureley can't bench 250 anymore but thats ok watch funny movies alwalys thank postive if you watch the news or look at it just stop nothing good is ever on the news you need postive frame of mind while your going to through treatment try to eat as much as you can the biggest thing is swallowing keep a bottle of water with you always you have to keep swallowing even if its just a little bit you will be ok even tap water may not taste good at some point dasani was my water of choice and i could always taste peanut butter yummy rescesss cups mmmm make sure to keep your neck protected with the aquafor very important try not to let cancer takeover your life stay as active as you can you will get thorough this much faster message me if you have any questions.btw i'm almost a year out all scans have been clean amen just got my dentrues today the bottoms are implanted and the tops are held up by suction it sucks but thats life.Good Luck we are all here to help you  

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