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How long have you survived

pascotty's picture
pascotty
Posts: 166
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

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

You may want to post your story and question as a new thread. You may get more responses that way, instead of it being buried in this thread, which is a different topic.

You also may wish to look at the HNC Superthread. There is a section about whether or not to do radiation.

HNC  SUPERTHREAD

Wishing you well.

Sweet

dotty4577
Posts: 7
Joined: Sep 2011

Thank you sweetblood,

I am not very savy yet about how and where to start. Thank you for your help. I will take your advise on posting as a new thread. I kinda thought that's what i was doing when I posted here. HNC Supershread huh? Okay.

Thanka again sweetblood.

Dotty

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

its always hard to learn how to navigate when you first join these things. lol

i just thought that your post would get way more replies if it stood on it's own. the superthread is sort of a place i put with links to questions we get every week. the most frequently asked questions. it has a lot of info to wade through, but there are a lot of helpful things in there for all stages of a head and neck cancer journey.

blessings~
sweet

Deeocala's picture
Deeocala
Posts: 2
Joined: Jul 2013

I have just been diagnosed with SCC Stage 2 tongue cancer this May 2013. I have had surgery with some removal of my tongue, floor of tongue, and radical neck dissection. No mets to other areas, and no positive lymph nodes. I am still going through effects from the surgery and was told yesterday that I should have Radiation. I will go to the consult but like you, I am not wanting any treatments. The way I see it, it is a 50/50 chance of reoccurance no matter which way you go. There are so many side effects with the radiation and chemo, I just want to get to feeling better and go from there. I rather have a better quality of life than quanity. Like I have been told it is your discision to make, but it is nice to hear other view points. I would like to get view points on pallative care.

debbiejeanne's picture
debbiejeanne
Posts: 2584
Joined: Jan 2010

deeocala, i'm afraid ur post will be overlooked in the middle of this post.  i suggest u copy and paste ur post into a new one.  that way u r sure 2 get the responses u r loking for.

i'm sorry about ur situation.  i'm a chicken myself so i would choose 2 have the rads.  i would fight it w/all that they offer.  the rads r rough but very doable.  it takes a while to recover from rads, but u do eventually.  i had 35 rad trmnts which seems 2 be the standard.  most who have posted had 35.

i wish u the very best what ever u decide.  i hope u have family to discuss ur options with.

dj

louhou13
Posts: 28
Joined: Nov 2012

Hi Dotty, found this post of yours and facing the radiation decision. I previously had radiation to the region 20 years ago and fear the worst of worst side effects. How are you doing and did you do any other treatments? 

Skiffin16's picture
Skiffin16
Posts: 8099
Joined: Sep 2009

Dotty was only here briefly..., actually only a week if you look at her profile...

John

par
Posts: 23
Joined: Oct 2009

20 months SCC-BOT 2 lymphnodes in neck

Steve5's picture
Steve5
Posts: 147
Joined: Oct 2013

Thank you for posting, I was just diagnosed with Advanced SCC and will meet for the first time with a Dr. on the 22nd of 2013 - I want to write what you did, 10 years post treatment and still here -

Steve5

Hondo's picture
Hondo
Posts: 5881
Joined: Apr 2009

8 years from first treatment of NPC and still going strong.

pascotty's picture
pascotty
Posts: 166
Joined: Aug 2010

That is sooooo inspiring to me. Thank you for your strength and for giving me and others so much hope xxx

luv4lacrosse's picture
luv4lacrosse
Posts: 1408
Joined: Jul 2010

Great to read for the positive attitude thing. All I have to hang onto is "I hope this stuff works." Seems like my main difference from allot of posters is the number of Nodes infected. I was 19 Cancer out of 21. Hope that does not "tarnish" my odds of beating this??

enough of my carrying on!!

CONGRATS TO ALL WHO ARE ENJOYING BEING NED!!!

GOD BLESS ALL OF YOU!!!

MIKE

fisrpotpe's picture
fisrpotpe
Posts: 1343
Joined: Aug 2010

The day your are diagnosed with this uglyness is the day your survivorship starts. I like to call it our new birthdate,

There are no odds to beating it, there are two results, survive and the other. You will survive, if you maintain a positive mental attitude, believe you will be fine and you will be, Continue your walk with faith, never, never, never give up and accept help from others as you can not do this yourself.

Keep it going.

John

denistd's picture
denistd
Posts: 511
Joined: Apr 2009

stage 3 laryngeal cancer, last treatment 6/17/09 clean pet today.

pascotty's picture
pascotty
Posts: 166
Joined: Aug 2010

That great denistd, clean scan is the best news. xxxx

Hondo's picture
Hondo
Posts: 5881
Joined: Apr 2009

I like the new birthday idea, you are so right about that.

take care

survivor31's picture
survivor31
Posts: 72
Joined: Apr 2010

im an 8th month survivor cancer of nasopharnx carcinoma two in throat and two on neck and pimaray site is in my nose and far im cancer free by gods grace and mercey God bless

matthewcplourde's picture
matthewcplourde
Posts: 33
Joined: Sep 2010

~11 years

squamous cell carcinoma of the tongue... I don't recall the classification, but they whisked me pretty much immediately into surgery. 1 coma, 1 month in the hospital, 3 months of radiation.

Hondo's picture
Hondo
Posts: 5881
Joined: Apr 2009

11 years now that is something to be happy about

PS: Welcome to our little faimily here on CSN

patricke's picture
patricke
Posts: 477
Joined: Aug 2006

I just passed the 10 year mark, YEEEEEEE HAAAAAW; I am so grateful to be alive!! I feel that beyond survive, I thrive. I truely believe in the adage that every day of life is a gift. I had stage 4 base of tongue cancer when it was finally diagnosed. I had radical surgery (as it is referred to) to remove the 5 cm tumor, along with seventytwo lymph nodes among which 6 were positive. I had 38 sessions of radiation (oh, such fond memories of the treatment...I don't think so). Hang in there pascotty; it gets better...........*

PATRICK

Joel4's picture
Joel4
Posts: 209
Joined: May 2010

...Since I was diagnosed with SCC unknown primary. Had left neck dissection, 42 lymph nodes removed along with tonsils. One lymph node cancerous with no extracapsular spread. No further treatment.
So basically I learned that cancer had spread in my head and neck from an unknown source and that the source may be in there lurking still. There's a pleasent thought.
Had a PET scan a couple of months ago come back with suspicious BOT activity. Biopsy came back negative. Yay!
Everyday I thank God for healing me. Everyday I have moments of doubt, fleeting moments, and I wonder if I did the right thing in not getting radiation. It was the tumor boards recommendation and I still know that it was the right decision for my particular case BUT doubt itself is like a cancer and it can creep into your mind and grow.
I feel the occasional pain in my throat or neck and immediately imagine a grapefruit sized tumor growing on my tongue. I wonder if my kids will be able to handle it if I had to have my tongue removed.
These moments of fear are short lived but they can really get under your skin some days.
I feel like I haven't had an exam in several months but it has only been 4 weeks. I find myself looking forward to having a tube jammed up my nose and the docs fingers down my throat just to know that things are still looking good.
Sometimes I think it would have been nice for a primary to have been found on my tonsil just so that I'd know where it had started and blasted the heck out of it.
So I will continue to fight this mental fight with prayer and positive thought.

patricke's picture
patricke
Posts: 477
Joined: Aug 2006

Hey Joel,I know that the uncertainty can be a bear, but you've got positive results (i.e., no cells) from the biopsy, so go with that great news. Keep up that positive mental attitude, fortified with your faith, and, as they say, take it one day at a time living each day to the the fullest (as you no doubt already do)! On a side note, unless a tumor had completely engulfed your tongue, it would not have to be removed, especially these days with the advances in radiation technology. I had a 5 cm tumor removed from the base of my tongue 10 years ago, and my ENT (God bless him!) was, by and large, able to rebuild my tongue. This past July, when I was hiking to the top of Mt. Washington in NH, and pouring a can of food down my PEG tube at a shelter half way up, a fellow hiker, who happened to notice (hard not to), came over and told me that he too had had tongue cancer. He (Ralph)told me that 3 years ago, when he was diagnosed, he had been treated with a new radiation tool, which precisely targeted his tumor and erradicated it without surgery. Ralph said that his PEG tube was removed 3 weeks ago, and he was hiking up Mt. Washington to celebrate.

PATRICK

fisrpotpe's picture
fisrpotpe
Posts: 1343
Joined: Aug 2010

Patrick
Congrats on 10 years. Just amazing, a great success story

I read your profile, you have a wonderful attitude. I believe whipping cancer is 80% positive mental attitude, accepting help, believing all will be ok and it will be, Staying with God and your faith, and never, never, never giving up.

We all here on CSN at Celebrating with you on your 10 year award.

John

patricke's picture
patricke
Posts: 477
Joined: Aug 2006

John, thank you for the congratulations and for your kind thoughts. I am with you 100% regarding whipping cancer! I very much appreciate the CSN group celebration, THANK YOU!!

PATRICK

Joel4's picture
Joel4
Posts: 209
Joined: May 2010

Thank you Patrick for the encouraging words and congratulations on hitting the 10 year mark. That is awesome!

pascotty's picture
pascotty
Posts: 166
Joined: Aug 2010

Thought I'd wake this post up again. Please add xxxxx

BrianKrashpad's picture
BrianKrashpad
Posts: 188
Joined: Jan 2011

I think the lump, who was called Rutherford, was first seen this last summer, in August 2010, so that would put me @ 5 months or so. Actual diagnosis was in the middle of surgery for what was thought to be a benign cyst, 11/18/10, so about 2 months counting thataway.

T1N2b, tonsil, left neck dissection. About halfway through daily radiation and weekly chemo (carboplatin), to finish up in early February.

Great to see so many with years and years!

Be well!

Jan Trinks's picture
Jan Trinks
Posts: 470
Joined: Apr 2009

Hi all:

Even though Charlie passed away in Aug. 2010 I still consider him a survivor for almost two years and as his doctor told me after his passing we did get a remission and I will be forever grateful for that as we did get to do some things we wanted to do and he did return to work for a little over a year so it can be beat if for some for only a little while; it's better than nothing! Keep up the good work everybody!

Jan (Basketcase)

dennis318's picture
dennis318
Posts: 349
Joined: Feb 2010

January 28th, 2010 was last radiation day...and chemo is when I started the long haul in recovery I am so glad and proud to be behind you Jan...Glad to see you here for your support, Thanks to you and Charlie..Still pushing forward, not threw yet. Dennis.

Skiffin16's picture
Skiffin16
Posts: 8099
Joined: Sep 2009

Almost your 1 year anniversary....

Congrats,
John

sportsman
Posts: 98
Joined: Feb 2010

I will be in February four years post treatment for pharyngeal cancer. Did not think I would make it initially but I am Blessed by still being around.

harper rose's picture
harper rose
Posts: 13
Joined: Jan 2011

Last rad for stage 4 tonsil cancer was Sept.3,2010. My pet/ct scan is set for Feb.3rd. I feel, as does my oncol, that I am fine! I told her that I refuse to have it any other way!

This site is wonderful, even when things are beyond difficult for any and all of us, this site has such a positive attitude.....thank you! HR

Hal61's picture
Hal61
Posts: 656
Joined: Dec 2009

8 months since finshed chmo and radiation.

Bal

ekdennie's picture
ekdennie
Posts: 231
Joined: Aug 2010

for me it depends on how you look at it.
I first noticed my tumor 6 years ago (jan 2005). I was diagnosed in late june 2010 (6-7 months), had it removed in august 2010 (5 months ago) and finished radiation at the end of Nov 2010 (1 1/2 months). either way...I survived it and I will continue to survive! :)
Mucoepidermoid Carcinoma Hard Palate with growth into the Maxillary sinus causing decalification of portion of septum and portion of right upper jaw. T2N0M0, low to intermediate grade clear cell variety, stage 4a clinically, stage 2 pathologically

arjenkins's picture
arjenkins
Posts: 36
Joined: Nov 2010

All of your posts...from a couple of months to 10+ years post treatment give me inspiration. My Dad just took his 5th chemo today (as well as which ever number of radiation this is)....2 weeks left. Just praying for great results for him and everyone going through this ordeal!

I definitely believe in a positive attitude and faith in God are two of the most important aspects...they sure have helped my Dad and me so far.

Praying for you all

Andrea

Hondo's picture
Hondo
Posts: 5881
Joined: Apr 2009

It will be 6 years on March 2011 from 2nd treatment

fisrpotpe's picture
fisrpotpe
Posts: 1343
Joined: Aug 2010

Does this help more. As of Jan. 18th Tuesday will be my 15 years.

Congrats to any survivor!

So everyone knows Survivorship starts the day you are told "you have cancer"

John

dogsrule's picture
dogsrule
Posts: 96
Joined: Apr 2010

What a difference a year makes. Last year at this time I was going thru radiation and hibernating in my house. I am now 15 months past my initial diagnoses of SCC unknown primary. I am feeling great. I have my energy back. Working, playing and loving life.
I pray every day for all of us to be healthy and survive the dark days and look forward to the sunrise and the light of a new day.

Jo

Pat in SC
Posts: 5
Joined: Oct 2010

Cancer of the left tonsil - 39 radiation treatments/modified neck disection
/no chemo back then. I recently had 30 HBO sessions for removal of seven bottom teeth. So far no problems. Please listen to your dentist and take care of your teeth.
Pat

Hondo's picture
Hondo
Posts: 5881
Joined: Apr 2009

That is some great news 16 years and still going, glad to have you here with us on Heat & Neck.

I do hope you plan to stay as I know with 16 years of back ground you have a lot of good information.

Take care
Hondo

terryscarlett's picture
terryscarlett
Posts: 143
Joined: Aug 2010

David has stade 4 A tonsil cancer with 2 lymph nodes, 39 rads & 3 chemo " cisplatin" . Trucking right along. God bless us all with good health this year...

npcsurvivor
Posts: 21
Joined: Nov 2009

Finished treatment for Stage II NPC (without nodal involvement) on July 1 2009. I am consdering celebrating the date as my second birthday (doosra janam or second birth according to Hindu mythology).

rotecdave's picture
rotecdave
Posts: 2
Joined: Sep 2008

I was told I had tongue cancer stage IV on February 12,2008 and after seeing two doctors I was operated
on February 14. I had a trak for 6 months and a feeding tube for 9 months and was glad to have it. I did
32 rads and 6 chemo at the same time right after the operation. They removed part of my tongue and
lymph nodes from both sides of my neck. I just finished 60 HB Treatments for rad damage in order to
get my teeth removed because of damage in my mouth. My wife has been the rock I lean on and don't
know what I would have done without her. I was 63 when I got sick and was out of work total for a year but
I'm back to work now and feeling great. I read the discussion board almost everyday. BEST WISHES TO EVERYONE.

rotecdaves

Skiffin16's picture
Skiffin16
Posts: 8099
Joined: Sep 2009

Welcome rotecdaves...

Congrats on the 3 years. Hoping you hang around and participate. I'm sure with being out and about for 3 years, you have a lot to offer the group.

Best,
John

mixleader
Posts: 267
Joined: Oct 2010

Well, it was May of 2009 when I was diagnosed with early prostate cancer and it was May of 2010 when I was diagnosed with Parotid cancer. How's that for a one-two punch? Then, I got right side facial paralysis in June of 2010 and it is still with me. So, I guess the answer is about a year and a half for any type of cancer and about 8 months for the Parotid cancer. I sure hope to be posting here as a survivor five years from now. Oh, heck, let's be optimistic and shoot for 15 years from now. It never hurts to set your goals high.

Roger

HAWVET's picture
HAWVET
Posts: 318
Joined: Apr 2006

I was diagnosed with nasopharyngeal cancer in January 1998 and completed treatment in June 1998. My dry mouth condition has gotten worse and probably aided by the aging process. My taste buds did not completely return.... probably about 60 percent.

Throughout the years, I have tried to maintain a very positive attitude. After reading some of the postings in this forum, I feel bad on your sufferings and makes me appreciate the ailments that I have. I do wish that no matter what your condition, there will be better days.

I confess that I like going to Las Vegas and continue to go there. I eat most of my meals at the buffets. I bring instant cream of mushroom soup mix and dip my sandwich in the soup. I did not curtail the things I liked to do.

I wish the very best in year 2011 and God Bless you all.

josh r.
Posts: 205
Joined: Oct 2010

Hello sister and brother survivors,
I feel so blessed to be stll going strong nearly twenty years after treatment for type iv throat cancer. I have written about my being diagnosed back on July 11, 1991 and fininshing treatment on November 22nd 1991. I was just past the half way point of my thirty plus years as a public school teacher, married one year and a recreational tournament tennis player. As I have written on a couple post at this incredible web sight I went thru concurrent chemo-radiation treatments from July 28 thru November 22nd 1991. I retired from teaching 16 years later and play tennis three times a week with the same intensity as I did back then but without the need to "win". I win just being out there. I also work three days a week in the food and wine industry so I have another career that I enjoy as much as I enjoyed teaching. The best part? Besides being alive it's being alive and sharing life with that wonderful lady who stood by me during those very difficult times. We find helping others through delivering Meals on Wheeles and helping other organizations whose goals are to help those that need aid probably help us more than we help others. So dear sister and brother survivors while my "good fortune" keeps running I pray that all of you enjoy a healthy if not healthier and longer run that I am "half way" through. All of you at CSN are amazing. Josh r.

fisrpotpe's picture
fisrpotpe
Posts: 1343
Joined: Aug 2010

Today is my 15th year anny. I have been blessed by Grace.

Congrats to All who have survived one day or more.

John

MarineE5
Posts: 760
Joined: Dec 2005

Hi John and Everyone,

I recently passed my 6 year mark for the completion of my radiation treatments. It is nice to see the numbers being posted. As WE all know, we try our best to move on after treatments and enjoy our lives to the fullest that we are able too.

We have some real trail blazers here.

My Best to Everyone Here

Crazymom's picture
Crazymom
Posts: 300
Joined: Nov 2011

Congrats on 15 Years...so happy for you

 

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