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How long have you survived

pascotty's picture
pascotty
Posts: 164
Joined: Aug 2010

I think this would encouraging for new and old members to read how long you have survived H&N c (cannot give it a capital)

I am a 5 month survivor of Right tonsil c, with 1 lymph node involvement T1N1M0

Cheers Jen xxxxx

bogey4on17's picture
bogey4on17
Posts: 6
Joined: Apr 2003

Twelve years since my diagnosis & treatment for Stage IV H&N cancer. After two surgeries, 38-sessions of radiation and, everyone's favorite, chemo-therapy, it's a great day to be alive! Since then I've ridden my bike (the pedal variety) >100K-miles, traveled extensively with my family, taken terrific vacations, raced LOTOJA 7-times, worked, ridden from Reno to SLC 11-times, raised >$300K for cancer research, and loved every breath I've been blessed to take. It truly is a great day to be alive!

luvofmylif
Posts: 344
Joined: Sep 2012

It is so encouraging to us "newcomers" to see these posts. It truly is a great day to be alive.

As my husband always says, Yesterday is history, tomorrow is a mystery, today is a gift.

luvofmylif
Posts: 344
Joined: Sep 2012

It is so encouraging to us "newcomers" to see these posts. It truly is a great day to be alive.

As my husband always says, Yesterday is history, tomorrow is a mystery, today is a gift.

bjw1955's picture
bjw1955
Posts: 67
Joined: Apr 2012

19 months post Laryngeal cancer 38 rads,6 chemo with trach, getting close to getting my trach out, God is good bjw1955

jalind's picture
jalind
Posts: 2
Joined: Dec 2011

I'm a 3-year T1N2pM0 Stage IV survivor that's been NED since the radical neck dissection.

Originally detected swollen lymph node(s) in my neck behind my ear (during a shower) between Christmas and New Year's in December 2009. Had to wait until after New Year's to see the doctor. Had a CAT scan in early January, followed by two fine needle biopsies as the first one was inconclusive. Pathology from the second one came back on January 27th, 2010: Squamous Cell Carcinoma, metastatic to at least two lymph nodes. Originated from SCC skin cancer, and we were reasonably certain we had identified the lesion, although there was always some thought we might have been dealing with an occult primary that came and went (almost certainly skin SCC though).

Had a modified radical neck dissection less than a week after the DX, removing 22 lymph nodes and the parotid gland on that side. Pathology detected full involvement in 6 nodes plus extensions forming into the parotid (from the 2 largest and necrotic nodes). The extent of node involvement classes it Stage IV. Proceeded with six weeks of adjuvant radiation therapy. Concurrent chemotherapy, while fairly uncommon, was not deemed statistically beneficial in my case (SCC of cutaneous and not of oral cavity origin). The surgery and radiation are a gift that keeps on giving, and undoubtedly will for the rest of my life. There are significant side effects, some temporary and some permanent. I've been able to cope with them without any impinging on my activities, lifestyle, or maintaining a high level of fitness. My physical activities include endurance road cycling over very long distances, and cross-country skiing on groomed and un-groomed trails. Not just a survivor, I'm a thriver, and am convinced that attaining and maintaining a high level of fitness (especially cardio-vascular) improves nearly all prognoses.

Been NED since the surgery (Feb 2nd 2010): no evidence of any detectable internal metastases.

Although it's not considered relapse or recurrence of the original, I have had to continually deal with squamous and basal cell carcinomas appearing in various locations. They've all been dealt with in situ (in the epidermis) which is fiarly simple. Most recently, a dermatology exam found a suspicious lentigo on my neck, within an inch if the neck dissection incision and on the edge of the radiation field. Shave biopsy revealed the beginnings of melanoma. Melanoma surgery at the beginning of January excised the entire lesion and biopsy showed melanoma in situ (Stage 0), fully contained in the epidermis with 3mm margin (at closest point). Not as much margin as would normally be desired (in situ goal is 5mm margins) but it's good enough that a "do-over" to take more is unnecessary. I've dodged a BIG bullet.

The upshot of my situation is remaining vigilant for recurrence and I believe it's broadly applicable to all types of H&N cancers. The conditions that created the original can spawn another later, in spite of any lifestyle changes. That can halt increasing risk and often reduces risk, but does not entirely eliminate it. Self detection saved me 3 years ago. None too soon as it was found at the 11th hour. Early detection saved me this past November. Melanoma spreads so easily and so quickly that it's considered metastatic once it's beyond the epidermis and into the dermis, resulting in very aggressive and often morbid treatment.

Best wishes for continued survival success to all!

John

ausrebel53's picture
ausrebel53
Posts: 74
Joined: Dec 2012

What a wonderful positive response, tomorrow I start chemo (Erbitux) and look forward in the future to sharing my good fortune here.

Michael

bjw1955's picture
bjw1955
Posts: 67
Joined: Apr 2012

It was 2 years last month found out I had a golf ball size tumor on my voice box{stage 3 Laryngeal cancer }after my first 2 rads and my first chemo 2 years ago tomorrow my hubby brought me home and I  collasped in the floor and quit breathing and 2-3-11 my ent dr put a trach in because that tumor was obstructing my airway, 38 rads  and 6 chemo and couldn't talk for a  year, I go the 13th of this  month  to get my trach out, their is light at the end of this tunnell. bjw1955

PapaPaul's picture
PapaPaul
Posts: 31
Joined: Jan 2013

I sure love reading about these longivity stories, Diagnosed 3 months ago I just finished third of 33 rads and first of 7 chemo tx for Stage IV SCC of left tonsil with 3 node involvement. I look forward to sharing my story as the years progress! Thanks

quemon
Posts: 9
Joined: Jan 2012

My husband was diagnosed with t4B sinus cancer (invasive squamous cell carcinoma)  2 years ago (in 1 month 5 days).  He was given 3 -6 months to live and offered pallitive care.  We had only known each other and been dating for 3 months at that time.   Through a series of miracles we found a team surgeons to save him.  There was magical red shoes and very much love involved.  

He underwent a crazy ass surgery to remove a tumor that had grown from the sinus to encompass his eye orbit and forehead bones and firmly attached it's ugly self to his center of thinking, his brain.  Oh, and also found it's slimy way down to 20 lymph nodes.  We were  introduced to the joys of 38 radiation treatments just to be sure woo hoo.  

Now two years out he amazes me everyday with his resolve to "carry on".  He is unstoppable in his desire to get back to a new normal and live a wonderful life everyday.  We have had our setbacks but somehow we get through.  

Where there was no hope, we now have hope every second.  

 

Always believe.

fisrpotpe's picture
fisrpotpe
Posts: 1338
Joined: Aug 2010

17 years from January 17th 1996  

john 

wild willy's picture
wild willy
Posts: 32
Joined: Jun 2012

right tonsil. 3 years next month. everything going well except still no taste at all and  maybe half my saliva back

hawk711's picture
hawk711
Posts: 525
Joined: Jan 2010

I am 2 years 10 months 10 days and about 6 hours but who's counting.  Have bad cold now, but have been NED since nov 2010.

wishing you all long and healthy, happy lives.

All the best, Steve 

pascotty's picture
pascotty
Posts: 164
Joined: Aug 2010

Can't believe I started this soooo long ago.  Scans last week showed ned again. 3 years have now past and I'm still here happier than ever xxxx Jen 

Skiffin16's picture
Skiffin16
Posts: 8087
Joined: Sep 2009

Glad we are both here along with so many others that have posted on this thread since you originally postedd...

Congrats ~ John

wild willy's picture
wild willy
Posts: 32
Joined: Jun 2012

3 years in march. right tonsil

wild willy's picture
wild willy
Posts: 32
Joined: Jun 2012

3 years in march. right tonsil. i cant seem to enter anything just one time. you can tell im not computor literate

cwcad's picture
cwcad
Posts: 117
Joined: Nov 2009

IT seemed like the thing to do.  Welcome to the old posters that I remember.  I happy for those that are still Kicking!  I morn the loss of those that fought the good fight!  I will see them soon enough.  Keep on keeping on cancer survivors!

Skiffin16's picture
Skiffin16
Posts: 8087
Joined: Sep 2009

Good to see and hear you are kickin..... Hoping your luck holds out for many years....

Best ~ John

wrhbounds's picture
wrhbounds
Posts: 39
Joined: Jan 2013

14 years T2N3M0 SSC  life is good here

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Survival(Living)

12 yrs 5 months 11 days! NPC stage 3 7.5 weeks of rads, 3 3hr chemo sessions during that, partial radical neck dissection then 3 weeks, 1 week a month for 3 month, 24hr a day chemo.

Side effect, or set backs I like to call them but still here and still LIVING!

Rachel

debbiejeanne's picture
debbiejeanne
Posts: 2433
Joined: Jan 2010

i'm 13 months ned.  i had cancer of the voice box and have had a total laryengectomee.  i also went thru 35 rad trmnts when it was first discovered iin 8/09.  it returned in 2/12.  that's when i had the laryengectomee and i've been ned since.  getting ready for another pet in about 3 months.  days are hard but i'm sure they'll continue to get better with each new day i'm blessed with.  it's just very hard dealing with a trake.

you are all in my prayers.  God bless,

debbiejeanne

sunshine_65
Posts: 15
Joined: Mar 2012

I was diagnosed one year ago today. I am feeling great, back at work,

after (of course, as many of you know) a long haul.

Cancer free since PET all clear sign since 9/12. Oncologist

doesn't want to see me until Sept 2013. 

Spent last night celebrating 30 years since my first date 

with my husband. Life doesn't get much better than this.

Em11
Posts: 13
Joined: Oct 2010

My husband is two years post treatment now.  Two and a half years post diagnosis.  He was stage 4 throat and base of tongue cancer.  He's still skinny as heck, low immune system, fatigues easily, has thick foamy saliva, has to take a water bottle everywhere, struggles a bit when eating, but he does eat.  He eats steak, hamburgers, fish, pasta, pretty much whatever he wants.  But that didn't come until at least a year post treatment.  It might take him two hours to eat a meal, but he eats it and enjoys it.  We take trips now and go to a lot of concerts and theater. It's best to sit on the end of row seats, in case he has a coughing episode and needs to step outside without disturbing the rest of the audience.  And we have found it best to stay in hotels that have room service, because then he can order in and eat in the room if he's not feeling up to going out.  But we just went to New Orleans recently and he did eat in several restaurants.  It was great to see him chowing down on some beignets at breakfast and crawfish gumbo at lunch.  He even indulges in a glass of wine a few nights a week, which with him being somewhat of a connoisseur prior to diagnosis, he was miserable thinking he'd never be able to do that again.  But we're living.  Living well, even.  Life is going on!

Crazymom's picture
Crazymom
Posts: 295
Joined: Nov 2011

So glad to read all the posts and what is really important in life.

 

I had SCC left tonsil and one left lymph node  T2N2 M0   I have been Clear for 18 months...have a 3 months scan on July 25, next week.  I am so gratefull I have this sight and all you wonderful people. I forget sometimes what is important.

 My 13 year old son is off at Jamboree 2013 with the Boy Scouts and calling home complaining and wanting to come home.  I was all stressed about it until I came to this sight and you guys helped me realize what is important.  I just sent him a text and said if you cannot have fun at a camp I paid $2,000 for, you can work at McDonalds next summer.  He texted me back and said he is having fun, will stay the entire camp and does not want to work at McDonalds next summer!

PS..my heath is good and I have no bad side effects....a bit of Chemo brain, forgetfulness, but everything else is good....Ann

 

Ann

Skiffin16's picture
Skiffin16
Posts: 8087
Joined: Sep 2009

LOL, tell him not only wil he be working at McD..., all of your CSN friends will come there and ask specifically for him come lunch time, LOL...

Awesome you are doing well Ann....

Thoughts and prayers for your upcoming scans..., and a long long life ahead....

John

Roar's picture
Roar
Posts: 241
Joined: Mar 2013

i will be coming up on 8 months 8/10 - second pet scan was NED. they say with what i have if you get past the first three years you have it in the bag - i was unknown primary with one lymph node removed - stay possitive - its the only way

CivilMatt's picture
CivilMatt
Posts: 2959
Joined: May 2012

 

H&N past & present,

Happily, 1 year and 4 months post from stage IVa, SCC, BOT, 1- lymph node  & HPV+ (surgery, rads & Erbitux).  What a crock of crapola made right by the H&N site, whew!  A little pocket of wonder, reasonableness and sanity surrounded by a morass of helplessness and fear.

Everybody keep kicking, I wish you all the best.

CivilMatt

UPDATE (6-28-2014):  2y3m post, feeling good, in my pj's!

 

patricke's picture
patricke
Posts: 468
Joined: Aug 2006

Hey Jen, I've been around, at this point, 13 years since my initial diagnosis of stage IV BOT.  I should say that I did not find out about what stage my cancer was until about 5 years down the recovery road.  I didn't want t know about the stage, because for me all that mattered was to hit the ground running and do what needed to be done to beat the beast.  There's been some ups and downs, some backwards and forwards, and gettin kicked to the matt a few times, but always gettin back up and keepin it movin forward.  Kids, remember, recovery is a marathon, not a sprint, and it takes lots and lots of patience; sometimes you have to take it one nanosecond at a time; but always, always remember I/YOU CAN DO THIS, the mantra that has gotten me through more than a few challenging times.  So, hang in there and keep it movin forward, life does get better, much better; I've had some of the best times of my life since recovery.  As I am want to say, "I'm just happy to be here!" Cheers...............*

PATRICK   

tommyodavey's picture
tommyodavey
Posts: 358
Joined: Nov 2011

It is so nice to read about all the positive survival stories here.  Yes, we lost a couple but I won't let that get my spirits down.  Why haven't I seen this thread before?  I looked for a post by me but only checked 3 out of 5 pages.

 

Stage 3 Mucoepidermoid Carcinoma BOT with right lymph nodes involved.  T3N2M0.  Radical neck dissection took care of those nodes.  Date of DX:Sept, 2011.  Last rad on April 2, 2012 so that makes it 15 months NED.

 

No matter what, I keep a positive attitude.  Last time I saw my Head and Neck surgeon I told him my positive thinking will keep this cancer from returning.  So he says "I have seen this cancer return".  Thanks a lot doc for raining on my parade.  It did not affect my attitude one bit.

 

So many great survivors.  We are winning this!

 

Tommy

toomuch
Posts: 1
Joined: Oct 2010

I'm now 3.5 years in remission. Stage 3 right tonsil. 33 radiation hits to right tonsil area only and 7 chemo sessions. Took a while to get back on my horse. But can now road bike further than I did prior to my cancer. Silver linings can be found.

Roar's picture
Roar
Posts: 241
Joined: Mar 2013

since my last treatment - unknown primary - one lymph node removed

lamata60
Posts: 3
Joined: Sep 2013

4 years, 2 mos. post treatment

 

JGE
Posts: 50
Joined: Mar 2009

5 YEARS from start of treatment. 99% physically back to normal but for dry mouth and Synthroid. Mentally, different attitude and appreciation regarding life!  ;)

Viilik70's picture
Viilik70
Posts: 58
Joined: May 2012

first diagnosed with squamous cell when I was 25 and then I got it again when I turned 39 along with Hodgkin's lymphoma and kicked its butt and now I'm 43 and keepin on keepin on! God bless you all and keep your chin up pressing forward in this fight!

John J

Crazymom's picture
Crazymom
Posts: 295
Joined: Nov 2011

19 months since I finished rads!   Ann

sukichu61832
Posts: 12
Joined: Oct 2011

Two years cancer free. T1 N1. P-16 positive. Left tonsil removed with neck dissection. One node involved, but they took out 30. Then, 30 rad treatments. Lost 90 pounds but have now gained back 30. Minor issues with swallowing, otherwise feel great!  It's a rough road for a few months, but gets much better. I was told by my oncologist that I am "cured". Still, there is that little fear .....:-)

 

catfish_58's picture
catfish_58
Posts: 124
Joined: Feb 2013

6 Months  now and counting.

billrobin
Posts: 6
Joined: Nov 2013

It will be 8 years to the month since diagnosed with scc stageIV left tonsil. It seems like a long time because I tried to live each day.

I am grateful to find this site.

Debi16043's picture
Debi16043
Posts: 47
Joined: Aug 2011

I had all teeth removed, cancer cut out, new jaw bone made from leg bone anod radiation.  Still here.  All reports have been good

 

Vivian589
Posts: 1
Joined: Jun 2014

T0 n2b mo

unknown primary- metastatic lymph notes left with extra capsular spread on left

chemoradiation-  

NED!!!!!!    Hope this is encouraging for those out there who are anxiously awaiting their two year mark

wmc's picture
wmc
Posts: 450
Joined: Jan 2014

Let me say thank you for starting this post, and for all who have added to it. So many straingers have been kind and very helpful to me and all he others that needed to join this wonderful group, that no one ever really wanted to be here. But as life will have it, we all are and I'm doing better because of this group. You get to feel and share others pain and joy when you read someone is NED. You also get the sad news someone you know, in a way, has lost the fight. So many of you have become like an extention of family and the only ones that can really understand what someone is going through. 

I have survived 8 months and still NED and doing OK. Cancer of the supergoltic and tumor was on vocasl coards. [Told it was T4, N2, M0, SSC] I was told that due to my servier lung condition I could not servive radation or the surgery. Thought I was prepaired to hear anything the Dr. could say but was I wrong. He did say, if we remove your larynx and give you a perminate trach we can do the surgery and remove the tumor. We will also do a radial dission on both sides of your neck [2~5] and remove the lymph galnds, 86 total. Well, that was not a had decision to make. Lets schedule the surgery, lose my vioce box and learn to breath my neck, but the cancer is gone. They said it will be life changing, and that might be an understatment, but I have a life to change and thankful for the second chance. Ended up being T3;N0;M0; prayers do get answered.

Bill Oct 2, 2013

Thank you all  :)

rush1958's picture
rush1958
Posts: 197
Joined: Jul 2010

I'm four years out from the end of treatment. I saw the good folks at KU Medical this week for my six month check up and all is well.

Rush

kingcole42005's picture
kingcole42005
Posts: 177
Joined: Oct 2010

Diagnosed 9/10 High Grade Mucoepidermoid Carcinoma, submandibular, Still alive and kicking! Doc says with every passing year less and less of recurrance, Yay me! Smile

Noellesmom
Posts: 1302
Joined: Aug 2010

My husband is a four year survivor of hypopharyngeal cancer Stage IVa.

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

Nasopharyngeal, unknown Primary, the lymphs did me a big favor by enlarging early-on, it seems= caught early.

kcass

Nous Defions's picture
Nous Defions
Posts: 30
Joined: Jun 2012

June 27, 2012 diagnosed with T2N2CM0 Stage IV SCC (HPV+) primary right tonsil with left and right lymph node involvement.

26 months and still kicking!! 

My life has changed drastically since my diagnosis and it has been hard dealing with the "New Normal".  I fight it every day and insist that I am the same person before cancer, both mentally and physically.  I will continue to fight and never give up because that is what cancer Survivors do!!

debbiejeanne's picture
debbiejeanne
Posts: 2433
Joined: Jan 2010

Nous Defions, you got that right!  that is a wonderful attitude and the only one we can afford to have.  i think we all have some days where its hard to deal with our new selves, but like you said, that's what SURVIVORS DO!!!  live on!!

God bless you,

dj

Noellesmom
Posts: 1302
Joined: Aug 2010

Four years post treatment for advanced hypopharyngeal and base of tongue SCC with one lymph node involved.  Released by oncologists last month!

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