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Long Term Survivors

jthornsbury
Posts: 42
Joined: Feb 2013

Would love to hear from survivors past the five and even ten year mark...I know that there are people out there but would love to hear from them.  Just starting the journey and need encouragment that this thing can be beat! Thanks!

Mikemetz's picture
Mikemetz
Posts: 355
Joined: Nov 2011

I am 4+ years post-treatment after a 2009 diagnosis for base of tongue (BOT), left side.  My current staus is NED (no evidence of disease).  You will likely get a ton of other replies from people who have survived cancer for many more years than me, but for most of us, the "new normal" is well in place after 4-5 years and you carry on from there.  I would suggest that you start with the Superthread at the top of this list.  It was compiled from posts made by people at every stage of this journey, and comes from our collective experiences.

HNC can be beat!  In fact, you will learn tha tyour biggest enemy at this time is not cancer--it's the combination of side effects from the high-tech barbaric chemo and radiation treatments.  You'll get lots of advice and support about that.  Some things to keep in mind--the 5-year survival rate for HNC is now above 80% for HPV+ patients, but you will have to earn that by hanging in through whatever combination of chemo, radiation and surgery in your tx plan.

Also know that you have found the very best group of patients, caregivers and SURVIVORS you could possible hope for as you go down this road.  Be sure to come here often for our support.

Mike

 

jthornsbury
Posts: 42
Joined: Feb 2013

Thanks for the reply...as I am eight weeks out of completing treatment which was just radiation (30) and no chemo. Still dealing with all the acute side effects and know that there is life on the other side just hard to imagine it right now. I go for first CT after treatment in a week and am getting anxious. Rad MD gave me an "exellent prognosis" and the head of my treatment team explained that the vast majority of people are "cured".  I am going to MD Anderson in Houston so replay their words in my head when feel a little down.  Again thanks for the encouraging word and congrats on 4+ years!

Mikemetz's picture
Mikemetz
Posts: 355
Joined: Nov 2011

Good to hear that you were spared from chemo and surgery, but for most of us the rads have the worst long-term side effects, so be watchful.  Also, be ready for a false positive on your first scan.  The rads produce some lingering hot spots that are sometimes interpreted as areas of active cancer.  Don't worry if that happens--just be patient until your next scan rolls around and that question should be cleared up.  It took until my third post-Tx scan to get an "all clear" (NED) scan even as the doc was 95% sure the cancer was long gone.

Mike

 

Skiffin16's picture
Skiffin16
Posts: 8104
Joined: Sep 2009

Dx in January 2009...

There are many here out in the range and further that you mention..., a few multiple Dx & Tx and still kicking...

You can read my early scenario on the post Advice, Help, Newbie... I just posted a long bit of info toward the bottom of the post..., you can also read my profile BIO.

But to save you time..., I've been clean and clear, NED since finishing treatment mid-June of 2009.

Best ~ John

MarineE5
Posts: 762
Joined: Dec 2005

Just want to let you know that there are many survivors that are over 5 years. Many of them don't stop by so much any more as they have moved forward with their lives. I am a bit over 8 1/2 years out. A person in my neighborhood that talked with me about my cancer is now 15 years out, works for himself and is still going strong.

My Best to You and Everyone Here

CivilMatt's picture
CivilMatt
Posts: 3093
Joined: May 2012

Jthornsbury,

Check-out the roll call 2013 it has lots and it is currently on page 1.

Matt (14 months post)

longtermsurvivor's picture
longtermsurvivor
Posts: 1836
Joined: Mar 2010

I will be fifteen years out from my first malignancy this month.  I have had the misfortune of having two others, but then I have had the fortune of having good results from treatment of those two.  So I am two and a half years out from my second cancer, and fifteen months out from my third.  You can read my bio, but it really isn't necessary.  Even after all the treatments, I'm pretty functional. 

 

best to you

 

Pat

 

CherieLW's picture
CherieLW
Posts: 438
Joined: May 2013

Look at all you survivors!  15 years is great Pat!

Hondo's picture
Hondo
Posts: 5936
Joined: Apr 2009

 

Diagnose first time of having NPC cancer in November 2002, and again in October 2004. I am now 10 years past first treatment and 8 ¾ past second treatment. I live with a PEG tube because I can’t swallow anymore, but I still work full time and travel with no problem. God has blessed beyond imagination and giving me the will to survivor and keep fighting. I just had sinus surgery on Monday to help clean up all old residue and doctor said no sign of any C. At the same time my Son’s wife gave birth to my 6th grandchild and all I could do was to pray thanking God for His wonderful blessing.

 

Wishing you all the best

Hondo    

 

 

 

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

hi, i am 12 1/2 yrs out from stage III NPC SCC, in 2000 they didnt know anything thry lnow now and yrt i am still here.  I was 28 yrs old, newly married, without children when i started, now i am 42 divorced(thank God) and the mother of an 9 yr Angel. when i was dx NPC was a rare cancer that was barely recorded in this country and it mostly happened to males in their 40's HELLO none OF THE AFOREMENTIONED. Now it is considered one of the most CURABLE cancers up there with Hodgkins(which when i was dx i remember thinking why couldnt it be Hodgkins).  Its ALL DOABLE, it has down sides believe me, but you will make it through, stay positive,stay here and off internet.  There are many smart people on this site that will hold your hand through whatever comes up.  Its a long ride on a rollercoaster, it seems like forever to get up that first hill, but before you know the ride is over then you need to regain you balance and walk on !

 

God Bless if you need me i am here,

Rachel

fisrpotpe's picture
fisrpotpe
Posts: 1344
Joined: Aug 2010

Monday night while i was at a Relay for Life by American Cancer Society dinner for Survivors they did an awesome recognition that would put smiles on all faces. 

 

the asked the 1 day to 5 year survivors to stand and be recognized. then the asked the 5-10 year survivors to stand ... then the comment was made " you 1 day to 5 years look at the 5-10 year survivors.... there is your encouragement. 

then they asked the 1 day to 5 years to sit while asking the 10-15 year to stand and made the same comment to the 5-10 year survivors... " There are your encouragement"

then they asked the 5-10 year survivors to sit while asking the 15-20 year survivors to stand, you see the rythem .. they said to the 10-15 year survivors "there are your survivors" i was in this group at 17 years. 

they asked the 10-15 year survivors to site and asked all over 20 years to stand. out of approx. 200 survivors total there were 9 with over 20 years of survivorship. 

lots of smiles happing thru out the musical chairs. 

jthornsbury.... with all the new radiation equipment along with how they can map a game plan to attack the cancer with less side effects that has been being used for approx. 5 years. along with that the added regiments of chemo and meds to help combat the side effects. those two advances of radiation and chemo regiments and add in sites like this amazing CSN for support.... computers when i did mine where only for the rich and then add in there was little or any information on the web, i know as one person i know did a search and found one article. 

my two points being.....

1 - there are so many more surviving

2- the equipment being used now along with proven regiments of chemo and meds are superior to old times. especially with the short and long term side effects. 

hope this helps encourage you!  i know if i could do it you can and you will!

john 

jthornsbury
Posts: 42
Joined: Feb 2013

Thanks for the encouragement and letting me know that there are many survivors out there.  Looking forward to being in that 20+ year group!!!

 

Jon

josh r.
Posts: 210
Joined: Oct 2010

Hi Jon,

You have come to a good place that I am sure you never planned to be part of, but as you can see you've hit the "jack and jill pot' of winners. As far as I know, that when I first started treatment, this sight did not exist but I am so thankful that it found me about four years ago. I will be a 22 yr survivor on Noverber 22nd of this year and pray that you and all our brothers and sisters are as blessed as I am and at some point in time pass me honking your horns in cellebration. All the best and enjoy Today, josh r.

Sheilarhc's picture
Sheilarhc
Posts: 46
Joined: Jan 2007

I am 6 yr survivor. Diagnosed October 2006, had surgery and completed 35 radiation treatments in April 2007 (no chemo).  Still dealing with the long term side effects of radiation but grateful everyday that my scans are clean. There is life after treatment and don't rush your recovery. Every one heals at their own pace and you will feel better soon. Congratulations and God bless!  

Duggie88's picture
Duggie88
Posts: 570
Joined: Feb 2010

I am only 3 years out but if you remind me I will tell you in another 3 years from now that life is good especially when i wasn't suppose to be here anymore.

      Jeff

ballonk's picture
ballonk
Posts: 54
Joined: Mar 2004

...and almost 10 years out from the 2nd bout.  I was diagnosed with SCC on the left side of my tongue in Feb 2001.  There was a chipped tooth at that location that was irritating my tongue for several years.  It would heal over and then get sore again and one day I noticed it didn't heal.  My dentist took a look at the spot and sent me to an oral surgeon for a biopsy.  The oral surgeon said he was "99% sure the spot was not cancerous"; he was wrong.  The dentist and oral surgeon said that the cancer was caused by the chronic irration of the chipped tooth scraping on the back of the tongue (chronic dental trauma is what is written in my medical records).  My fear of going to dentists and taking care of that chipped tooth almost cost me my life.  

I had about 1/4 of the left side of my tongue removed in 2001 with clear margins so my ENT said no radiation or chemo was needed.  In 2003 I was getting ready to retire and had just had my annual ENT checkup with no evidence of disease (NED).  A week later I had a huge nosebleed (unusual for me) and within a few days a lump appeared in the left side of my neck.  In my heart I knew the cancer had returned but my ENT put me through several weeks of medical tests to confirm my suspicions.  In August 2003 I underwent an 11 hour radical left neck dissection, removal of about 80 lymph nodes in the left side of my neck (the tumor was encapsulated in some of the lymph nodes), and removal of my tonsils (that recovery was way more painful than the neck dissection).  I retired from the federal government in September 2003 and moved back home to LA.  I then underwent 2 months of daily intensity-modulated radiation therapy (IMRT) which ended December 16, 2003.  I had PET scans for a few years after my 2nd surgery until my insurance company (BCBS Federal Empoyees Program) would no longer pay for them.  I was going to pay for them myself but my oncologist said he did not think it was necessary at that stage in the game.  He said he'd give that same advice to his own mother.  Now, I have an ENT exam and an exam by my oncologist, along with a check xray annually.  

It's been a challenge and I recovered physically before I did mentally.  After the 2nd bout with cancer, I prepared myself to die as best I could (even pre-arranged my funeral and wrote my obituary) while trying to live my life.  In actuality, I was merely functioning in a "survival mode".  I had struggles with depression on and off and finally agreed with my doctor's recommendation that I go on an antidepressant.  It took a few tries to get the right brand and dosage for me but now I am doing very well and enjoying life to its' fullest.  I have some weakness and numbness in my left shoulder and neck from the surgery and some difficulty swallowing.  I can lift my left arm but movement is limited and I can't raise it over my head.  Several people that I've met over the years said their doctor ordered physical therapy to reduce the side effects of a radical neck dissection and they have more movement and control in their arms.  Every few years I see a gastroenterologist to have my throat dilated as my esophagus is kinked up from the IMRT.  My mouth is sensitive to certain foods and everything tastes overly salty to me but at least my taste returned to normal.  I do have some saliva production left but I do supplement my food with water while I'm eating.  I have had several very scary choking episodes over the years where food got stuck in my esophagus (usually from not cutting meat into small enough bites and not chewing it long enough) and I could not breathe.  In those cases, I almost did myself in by trying to force water down my throat to clear the esophagus and force the food down.  That does not work in my case.  I have to cough (almost violently) and cough the food up and out of my body.  Not pleasant; but a lifesaving maneuver as I live alone.  Most carbs tend to get stuck if I'm not careful; even mashed potatoes.  Steamed rice is still difficult to swallow.  

I'm encouraged by what I've read in this thread and hearing from long term survivors.  I wish you well in your journey and hope and pray you can maintain a positive frame of mind as my doctors has said that is instrumental in a good outcome for their patients.  Because I responded so well to treatment the 2nd time, my oncologist asked me to be in a commercial for the hospital's cancer center and they also made a few billboards to place around the city.  While I HATE being in the spotlight I agreed to do it as I think it's important for people to know that cancer is treatable and does not always result in a death sentence.  I don't post much at all but I do lurk and there are some really great people who give wonderful advice and support.  Please contact me via CSN email if I can be of any help to you.  Hugs!

Kathy  

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