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Just diagnosed

Gazebo78
Posts: 8
Joined: Jan 2013

I am new to this site and this discussion group.  For more than a year, I suffered from a chronic sore throat that included neck pain, stiff neck, eare pain, headaches and difficulty swallowing.  Multiple tests including two ENT endoscopies, an upper GI endocsopy, a barium swallow test, a thyroid ultra-sound and allergy testing failed to produce either a diagnosis or any relief.

After celebrating the anniversary of my sore throat, I revisited my ENT and declared something was seriously wrong and he had to find it.  Another throat endoscopy during that visit found the tumor - at the base of my tongue just above the epiglottis.  Two weeks, a CT scan and a biopsy later and this afternoon I was diagnosed with Stage III throat cancer.  Lymph nodes on both sides of my neck appear to be involved.  A PET scan is coming in 10 days.

In anticipation of this, I visited a Cancer Care Center that is local and highly recommended.  Within 24 hours of the biopsy review, they have me schedulked for a series of appointments with a radiation oncologist, surgiucal oncologist and a various other cancer team specialists.

I am determined to do whatever is necessary but I am also very anxious.  I look forward to getting to know some of you and to learn what has helped you along the way.

By the way, I am a 57 year-old man, in otherwise good health, with three children and four grandchildren.  

Thanks in advance for your  assistance with questions and concerns.

 

phrannie51's picture
phrannie51
Posts: 3669
Joined: Mar 2012

that nobody wants to join....I can tell you right up front that you have found a great forum of people who are knowledgable, and supportive.....I've been here since last March, when I was diagnosed with Nasopharyngeal cancer (that's behind the nose). 

My first advice?  STAY OFF the internet....I just about scared myself silly reading stuff....much of which is outdated.  You will do well enough coming here for information from people who have trudged the same path as you are on.

It sounds like tho you had a slow start in getting diagnosed, but now they have pulled you in and are getting things moving quickly....this part in the beginning is the most nerve wracking.  It will seem like things are moving slow (at a time when we just want to get the cancer out of us as fast as possible)....but it won't be long before your whole life will center around treatments.

Another thing I want to pass on to you.  You are going to be ok!!  Treatment isn't easy, but it's very doable....start reading posts in here, to get an idea of what you might be looking at treatment wise, so you have a heads up.  Just in keep in mind, nobody reacts the exact same way....but you will always find someone on here who has been where you are, so just ask away...all questions are legit, and you will always find help.

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

Hi Gazebo,

As many will say, welcome to the site but sorry it's under these circumstances. I too was recently diagnosed (Nov 2012) Tx N2b MO Stage IV. I'm a slight bit ahead of you as I've gotten to the point of deciding on a place of treatment but I'm still a bit away from actually starting. I still have some procedures to undergo before they decide on a definitive plan of action.

I totally understand the anxious part for sure! I will say that everyone here has helped aliviate some of the fear and stress of dealing with this beast and have been supportive above and beyond the call of duty.

I can tell you from my brief experience  the the biggest thing for me personally was finding a "team" of doctors that I felt comfortable with. Too much knowledge can freak you out but it's good to know what you're dealing with. As many told me, "Don't read too much"! (I was too late on the tidbit of advice ~lol~). We're not a statistic and we're all different in how our bodies react to treatment and recovery.

I'm sure many will chime in with encouragement and tried a true hints and advice. Welcome to the battlefield. Here's to victory!

"T"

Skiffin16's picture
Skiffin16
Posts: 8062
Joined: Sep 2009

Welcome to the family...., Abi-Normal as we are....

Great people here, tons of experience of differing levels of treatment and recovery.

 

Myself, I was STGIII SCC Tonsils, and a lymphnode..HPV+. My lymphnode was on the same side....

There is tons of great info on the SUperThread, first post on this forum...., check it out as you feel like it.

 

I had some irritation in my throat for a few months prior to Dx... First ENT visit, he was 90% sure I had throat cancer....

Three days later, the tonsils came out, confirmed STGIII Tonsils, a few weeks later.., biopsy confirmed HPV+.

Chemo, rads..... That was early 2009, all scans have been clean and clear since...

 

A good positive attitude, and detemination will take you far in recovery, as will a sense of humor.

 

Best ~ John

ditto1
Posts: 630
Joined: Mar 2012

As the others said, welcome sorry you had to find us..  But as others have said its going to be a great place to secure information and companionship, and everything from advice to hand holding to a little butt kicking if necessary which we all needed at one time or the other to get thru this.  Im 56 dx March 2012 with BOT IV lymphnodes one side.   I had no surgery but did do 33 chemo treatments, 2 cisplatin and 9 erbitux over 5 months.  It was not easy but doable.  No peg or port for me but do not be surprised if one or both are offered to you.  In time there will be changes in your taste and desire to eat, it will return after tx but be prepared so if you have a list of your favorite foods, eat any and all and as much as possible to hold you over until your tx is done.  As Skiffin said go to the SuperThread great source to answer questions anytime day or night, and you can always get clarification from folks on this forum.  Although I went thru a bit of a scare after my last PET scan, the biopsy taken last week seems to confirm the cancer is gone.  So buckle up for the journey find family and friends for support and know that the folks on this board are here day and night.  This site is what along with God and great Doctors got my wife and I thru this. 

CivilMatt's picture
CivilMatt
Posts: 2903
Joined: May 2012

Gazebo78,

 

Welcome to the H&N forum and at the same time I am sorry you qualify as a member.  My route to get started wasn’t as long as yours, but it had similar results (cancer base of tongue with some lymph node involvement).

 

It sounds like you are getting your team and plan together for the big journey.  The only advice I might offer now is to take someone with you to these appointments, it never hurts to have another set of ears to hear what is being said.  I was a bit overwhelmed by all the information and how fast they expect answers.  I think I was on autopilot during most of my treatment.

 

Don’t let it scare you too much, there are a bunch of us who have been down this road and heaven knows I am not the bravest person and I made it out ok.

 

One more thing, if you don’t like confined spaces you may want to get a prescription for anti-anxiety meds before the CT scan.  I had my first ever anxiety attack during my PET scan, I made it ok but from then on I had Lorazapam to dull the edges a little.

 

Best,

 

Matt

donfoo's picture
donfoo
Posts: 1192
Joined: Dec 2012

Hi,

I'm not much ahead of you so understand totally your situation. There is good information in the FAQ - Super Thread so I would read thru those references. It does take time to get everything lined up. If you are going to a large cancer facility that deals with lots of patients than you may get through all the diagnostics, consults, and treatment planning and preparation quicker. However 5-7 weeks seems the common range and 4 weeks seems really fast and more than 8 weeks seems pretty long. 

My advise on the "Don't read the Internet" is qualfiied. Yes, do NOT start reading all the prognosis statistics as do not reveal what is going on NOW and do not adress your specific case and situation. This is not like a broken arm with common symtoms, treatments, and outcomes. It is far more complex and there are so many individual variables it is very difficult to predict outcomes, particularly longer time periods where recurrences can occur. 

I DO strongly believe you need to educate yourself as fast as you can so you know exactly what is being done to you and what every option is available to you, and to understand why your treatment plan has been designed for you. Again, there are many variables that go into the decisions so for you to fully understand, you need to know what those variables are and how they effect YOUR case, everyone is different.

Good luck,

Don 

Grandmax4's picture
Grandmax4
Posts: 583
Joined: Dec 2011

I'm 10 years older than you and female~~~September,2011 I was diagnosed with a mass on my epiglottis..at that time I wasn't even sure what we needed that for~~I found a fantastic team of Drs at The James in Columbus, Ohio. November 2011, I had surgery by de vinci robot and my epiglottis plus lymph nodes were removed. I was very blessed that the nodes showed no sign of cancer and so avoided chemo and radiation.

I won't tell you it was a piece of cake, because it wasn't..took one full year to learn to speak, swallow and be able to eat almost anything I want..I will tell you, the pain was very low, and I kept high energy. Everyone is different, this forum is overflowing with wonderful, kind,knowledgable people that want the best for you and will be here to help throughout your battle.

Much  good wishes as you begin your fight against this beast, you can do this and you can win!   Peace

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

Welcome to our club. My original tumor was confined to the larynx, so my experiences won't directly apply. To beat this requires team work. Beside having God on your team you need the medical professionals, yourself (the patient) and caregivers (family/friends). I think the caregivers have it worse. Take care. There are many individuals who will help you on your way. Rick.

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

I echo all of the above posts. My H&N was a bit different than your's, but many others had the tongue involved, and there's plenty of help here- all you gotta do is ask for answers to your questions, and someone will know. There are a number of "givens" we have all learned in regards to much of what you will experience, including what is expected of the Drs taking care of you so that the H&N experience is not too bad.  My last rad was in early-April of '09= you are gonna survive this thing, so get used to it! There's a few Folks who hang around this place that are well over 10-year Survivors. Many of us look back to where you are now, before the tx starts, and think of it as the worst of times. That said- the bright side is that it does get better, and is very doable. No walk in the park, but can you go thru it all and survive? It just might take over your life for awhile, but keep it in the Positive and keep moving forward to the last day of treatment and the start of your 2nd chance at life. And,

Believe

kcass

Kim_M's picture
Kim_M
Posts: 3
Joined: Jan 2013

Hi, I joined today too. I had most of the same symptoms as you, but getting to the dx was very different. I had 2 surgeries to remove polyps before the lab report came back positive for cancer.  I was referred to UofM Cancer Center and things moved quickly from there. I had Chemo on Tuesday. Yesterday was bad for me. Better today.

I go back the first of the month for new CTs and a Tumor 'mapping' surgery. At that time they will decide where treatment will go. (chemo, radiation or both, or surgery.) The hope is this chemo treatment will shrink the tumor by 50%

I'm 55 yr old female and will fight the best I can.Smile Maybe we can chat sometime

Skiffin16's picture
Skiffin16
Posts: 8062
Joined: Sep 2009

Welcome, and hang on for the ride...

Like mentioned above, checkout the SuperThread when you can...awesome info there. I was STGIII SCC Tonsils as mentioned above. I also had a lymphnode as a secondary (same side)..usually if you have lymphnodes on opposite sides, they classify you as STGIV....

Anyways, with the tumor location, they decided similar to your MD's thoughts, see what effect the chemo has before surgey or dissection. For me that was an excellent call..., the tumor actually dissolved away near the iitial nine weeks of chemo.

It didn't lessen my treatment any, as I still had seven weeks of concurrent (weekly chemo and daily rads)...

But the results, I have been clean and clear four years now...

Best ~ John

luv4lacrosse's picture
luv4lacrosse
Posts: 1385
Joined: Jul 2010

No need to repeat all of the good advice my friends have already convened. Stay strong, if you feel 100% comfortable with your medical team, take a leap of faith and do exactly what they say, and if not, be selfish and seek a second opinion. 

We will be here for you through thick and thin.

Mike

jim and i's picture
jim and i
Posts: 1591
Joined: May 2011

My husband was late in diagnosing as well, 3 years. His was base of tongue with two lymph nodes involved. His treatment was 35 rad, 2 cisplatin and 5 erbitux. You have come to the right place. I would not have survived Jim's treatment if not for these suportive and knowledgeable people.

Debbie

Isign4Him
Posts: 34
Joined: Jul 2012

Hi, wished with all my heart I could kick you out of this club, but now that you are here this is agreat place for support and information. People here are great and have alot of valuable information gleened from experience. You have close to what I was treated for. I had sqamous cell carsinoma of the left tonsil that spread to nodes on both sides of my neck. First, get the port and the PEG although I hated the PEG but had to have it for a month before they could fit me for a MIC-KEY button, I strongly recommend the MIC-KEY as opposed to the PEG. Its a lot less inavasive and managable. The port and the MIC-KEY are the best things I did and they will be a God send for you also.Get them before the TX starts if you can. Stay positive, its tough but it will make your journey alot better. Dont be afraid to ask questions and the DRs and nurses for help. Use this site as it is a great place and will help you deal with alot of different things you will have to face. Trust God !

In Christ, Kevin

hwt's picture
hwt
Posts: 1882
Joined: Jun 2012

Hate to see the seats on this bus filling up again. It's a journey none of us wants to be on but it is doable and I hope yours is easier than you anticipate.

God bless,

Candi

Gazebo78
Posts: 8
Joined: Jan 2013

You all are some amazing folks.  I say hi, I'm new in town and 15 people welcome me.  I have read many message threads and I am really pleasantly surprised at the volume of information, idea sharing  and, most importantly, love and support that goes on here.  Thanks and I look forward to sharing my experience as well as learning from yours.

Best wishes to all.

AirForce Vet's picture
AirForce Vet
Posts: 25
Joined: Feb 2012

Sorry you had to join our little group.  My situation was similar to yours.  I was 52 and was always having a nagging sore throat that at times the pain would shot like a bolt of lighting into my right ear.  PCM fooled around for a couple of months with antibiotics to no avail.  Then I insisted I be referred to a ENT doc who did the little scope thing and there it was BOT tumor.  Resulting Biospy and PET/ CT scan showed T2N1M0 tumor.  In laymans terms; less than  4cm large site minor involvement on 1 lymph node with no far away spread.  Went through 2 Cisplatin treatments, could not do # 3 due to loss of hearing and 7 weeks of Rads finished in Jan 2012.  It is not an easy treatment but one you can make it through!!!!  I would recommend a PEG feeding tube be installed.  Made things so much easier to maintain proper nutrition when your throat is on fire.  You will do well fellow warrior.  Just put your head down and be determined!!!

 

Joe

 

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

Gazebo,

welcome, lousy way to meet really great people here.. Sorry you get to be one of them. 

Ask many questions, you'll get great answers! My husband just completed his chemo and rads 8 days ago, and both of us have benefited greatly from the good people who went before us who were so forth coming with info and invaluable advice, often times served with a bit of humor, adding smiles.. When you don't think you have any left.

Dans (52 y/o) cancer was diagnosed as T2N2bM0 stage IVa  left tonsil cancer, a robotic tonsillectomy and left neck dissection, followed by 66 gys of rads over thirty days, with a cocktail of cisplatin, & paclitaxel weekly for the 6 weeks. He's currently at home, with home infusions as he wears off a few of the side effects.

One thing I suggest, is read the first thread on the list.. And I actually stocked up on a few of the items people told us about, made sure where to find them in Amazon for fast deliveries if he needed more... It was nice to have some on hand Before we needed them.. And use things like lotion on your neck after rads... From day one. It'll pay off later. I wish we had paid attention about the saline soaks early too, they really helped.

oh and my best advice?  When you visit the nurses and doctors, and they ask how you are?  Fine and good are not appropriate answers if you truly are not fine or good... They will hand you new tools based on your feed back, it's not a good place or time for politeness. in our case, pain and nausea got ahead of my husband, and naturally they thought he was fine and good! :)

good luck, and welcome,

Kari 

Gazebo78
Posts: 8
Joined: Jan 2013

Kari, thanks for your words of advice.  Would you mind being a bit more specific about the kinds of items you stocked up on?

Thanks so much for your help.

Jim 

Skiffin16's picture
Skiffin16
Posts: 8062
Joined: Sep 2009

Jim, she is talking about the SuperThread...first thread on this forum.... It has tons of useful information, links, etc....

One of them is a huge list of things to have on hand... You don't want them all, LOL... But it'll give you a reminder of things you might not have thought of...

Essential Items List from SuperThread

Best,
John

Gazebo78
Posts: 8
Joined: Jan 2013

Thanks John.  There is so much in that SuperThread, I couldn't find this list.

Blessings,

Jim

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

Jim,

your mileage might vary, but here are some items I'd make sure i had on hand again!

childrens liquid Advil 

calendula cream 

100% aloe, no additives

a case or two of nutritional drinks (ensure, glycerna) as a start.. Try every version/ flavor, get your favorite

'very soft' toothbrushes - I replaced his every week due to possible germs, or thrush

talk to your dentist about tooth paste and mouth wash, ours supplied it.

Small water bottles - they fit in pockets!

a good back pack.. To carry the products in where ever you go.

a good thermometer, we got one that glides over the forehead

candy with xylitol (encourages salivation)

a humidifier that's quiet and directional mist.. We have one upstairs and one downstairs

a super fatted soap, that is gentle on sensitive skin.. I bought Basis

baby shampoo

We liked Mugard, there are entire threads on it. Mugard.com, our dentist helped order it.

glycerine suppositories

colace 

PEP-CID

Non acidic fruit juices, baby versions are more natural, less additives

pedialite

your favorite lip balm

clorox wipes.. Hit every light switch and door knob in the house.. Every counter where staff germs can live..

qtips and bacitracin (when you notice the saliva disappearing, it helps to coat the inside of the nostrils with bacitracin - it moisturizers the air as it passes by)

if I think of more I'll add some.. But I figured I didn't want to run to the store everyday, I wanted to be there for my husband.. And it helped to have these things before we got started.. Oh and maybe a bin to keep it all in!

and look at the super thread on top of the others.. That's pretty much where I learned what we might want on hand!

Good luck, Kari

 

Gazebo78
Posts: 8
Joined: Jan 2013

Kari, this is incredibly helpful.  Thanks so much for the time to write this all down for me.

Blessings,

Jim

Gazebo78
Posts: 8
Joined: Jan 2013

Medical oncologist updated my diagnosis to Stage IVa (T4,N2, M0?).  The M is yet to be determined during next Tuesday's PET scan.  I had a swallow test with endocopy two days ago.  The video showed my base tongue tumor, abnormal growth on both the top and sides of my epiglottis and swollen membranse around the larynx opening.

They told me it is the most advanced form of throat cancer that they consider to still be curable with the local region "fully involved".  So a 2nd biopsy tomorrow, a PET scan next week then on to treatments.

I guess it doesn't really change anything but I feel like I went fom fighting to get well to fighting for my life.

Just want to ask for your prayers.  Thanks for being a plcae and a group of folks that will liisten and be supportive.  God bless you all in your struggles.

 

Jim

Skiffin16's picture
Skiffin16
Posts: 8062
Joined: Sep 2009

We all fight for life..., unfortunatley cancer is cancer...

You definitely have my Thoughts & Prayers Bro...

Just realize that even though the Dx is a little more involved than you thought, Tx is pretty much the same, and more than likely the results will be also...

There's many here that were STGIV and survived...

Stay positive, maintain some humor, and never give up.

Best ~ John

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

Jim,

My husband was T2N2bM0 stage IVa tonsil cancer  at age 52... You are not alone, and as John said, just makes you want to fight harder! We were told the same, it's cure rate is very high!

prayers are with you!

Kari

phrannie51's picture
phrannie51
Posts: 3669
Joined: Mar 2012

there are many, many survivors on here that were Stage IV.....and the treatment isn't going to change at all.  Fighting cancer is fighting cancer....be it T2, T3, or T4.......It's hard after spending most of our lives fighting colds, flu, and the general germs that flow into our lives, to wrap our heads around the fact that what we have now is life-threatening.....I had a hell of a time putting my name in the same sentence as "cancer"....it just didn't fit!! 

You've got all our prayers and positive thoughts.....we know you're going to get thru this, and come out the other side ok.....it's just a long road.

p

donfoo's picture
donfoo
Posts: 1192
Joined: Dec 2012

Hi Jim,

I am just abit ahead of you in that I just finalized my treatment plan a couple of weeks ago and started induction chemo this week. My staging was often opaque and was not clearly offered and more finessed to me as it turns out I am staged 4a or 4b and Mx, M?, M0, depending. In hindsight, I think the issue is what you have is curative or pallliative treament options. In other words, do the doctors vote to cure you or comfort you.

Until my MO presented my case to the tumor board, I think my case was on the line due to the PET showing spots on the lungs. I attended the board and felt strongly the positive feelings and statements that I was deemed curable. It was not until a day later I sort of dawned on me that the meeting yesterday was like the judge giving out  the life or death sentence to me. Sorry if this sounds so blunt but that is how it felt.

Having a clear treatment plan now is certainly more comforting as much of the uncertainly is gone as to which road you are on., The other things can be dealt with as they arise. The various symptoms and side effects, various ways to get food in, etc. 

Best to you from the bottom of my heart, Don

Gazebo78
Posts: 8
Joined: Jan 2013

Thanks for your encouragement.  I definitely feel like the team is committed to curative treatment so I am thankful for that.

Sorry if I sound like a whiner.  I realize I am not alone and many others have walked this road before me.  Thanks to all for your encouragement and frank advice.

Jim

phrannie51's picture
phrannie51
Posts: 3669
Joined: Mar 2012

There is no such thing as "whining" here....we threw that word out!!  We all get scared and we all hurt in places along this road we're on.....everyone of us needs to vent or say how we're feeling....it's part of the process.  My Oncologist told me that the treatment we go thru for HNC is second to Bone Marrow cancer in terms of how tough the treatment is....You just feel free to say how you're feeling and we'll be here to buck you up Smile.

p

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