Patient / Survivor Header
Page 1 of 3 1 2 3 >
Topic Options
#29861 - 11/24/02 09:25 PM Long Time Survivors
digtexas Offline
"Above & Beyond" Member (500+ posts)

Registered: 09/06/02
Posts: 642
Loc: Houston, Texas
I sure would like to hear some stories of long time survivors. Do any of you fit that description? Do you know any stories, even anecdotal, about people who have survived oral cancer for 20 years?

Danny G.
_________________________
Stage IV Base of Tongue SCC
Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.

Top
#29862 - 11/24/02 10:07 PM Re: Long Time Survivors
rosie Offline
"Above & Beyond" Member (500+ posts)

Registered: 10/19/02
Posts: 546
Loc: Pennsylvania
I also would like to hear some long term survivor stories. Even 10 years would be nice to hear about.

Rosemary
_________________________
Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.

Top
#29863 - 11/24/02 10:17 PM Re: Long Time Survivors
Brian Hill Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Registered: 03/18/02
Posts: 4732
Loc: Laguna Niguel, CA
They are out there, though the numbers are not as high as we would all like. Read Rick's story in the people section of the web site.... now 20 years and counting.

http://www.oralcancerfoundation.org/rick.htm
_________________________
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.

Top
#29864 - 11/27/02 09:31 AM Re: Long Time Survivors
PJ Offline
Member

Registered: 08/05/02
Posts: 17
Loc: Texas
When I went to Houston to have my biopsy (was not cancer), my Head and Neck Dr said he has a patient in the town where I live (400 Mi from Houston) who is a 20+ year survivor. In fact, the man had just been in the day before for his annual checkup and my Dr had released him..no more checkups needed.

Top
#29865 - 11/28/02 02:05 AM Re: Long Time Survivors
Brian Hill Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Registered: 03/18/02
Posts: 4732
Loc: Laguna Niguel, CA
PJ... we sure would like to have that long time survivor come to this board and post a message to the people that read it. He is a beacon of hope to all. Perhaps you could have the doctor contact him and refer him to us, I would also like to tell his story in the patient story area. Your help in locating him and having him contact the foundation would be helpful.
_________________________
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.

Top
#29866 - 11/29/02 06:58 PM Re: Long Time Survivors
digtexas Offline
"Above & Beyond" Member (500+ posts)

Registered: 09/06/02
Posts: 642
Loc: Houston, Texas
When I first got diagnosed I began searching around on the web and originally found SPHONIC and contacted their local guy. After a few emails I realized that we knew each other. I am a criminal defense lawyer and Bill used to be a Spanish/English interpreter at the U.S. Court House. Over the years he assisted me many times in court or in the holdover cell where I needed to consult with a client and my Spanish was just too limited. He was always kind and considerate, not only to the lawyers, but also to the unfortunate souls who were in chains. I don't know how many of you have ever spent time around the criminal justice system, but many people who work in it are not pleasant to the defendants.
Bill always wore an eye patch and had obviously had some kind of facial surgery but I never knew what from. I thought perhaps he was shot in Viet Nam or something. Well it turns out that he was diagnosed with oral cancer and had surgery back in the early 80's, perhaps as long as 20 years ago. He has had a recurrence and has recently retired, and gone throuh a couple of serious surgeries, including the type where a leg bone is used to make a new mandible. Bill conducts the local SPHONIC support group. For all that he has been through his attitude is absolutely wonderful. He just returned from one of his annual trips to Central America where they take doctors down there to care for the medically needy.
The good news is that I have bugged Bill to join OCF and he informed me that he signed up last week. Now I will attempt to get him to write his survivor story here. The guy is pretty amazing..throughout all this stuff he still goes out and runs long distances.
I hope that you will hear from him soon.

Danny G.
_________________________
Stage IV Base of Tongue SCC
Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.

Top
#29867 - 11/30/02 06:36 PM Re: Long Time Survivors
William A. Phelan Offline
Member

Registered: 11/26/02
Posts: 1
Loc: Magnolia, Texas
I want to thank Dan G. for his kind words about my long-time survival with head and neck cancer in my oral cavity. I would also like to introduce myself and, in time, come to know all of you who are "veterans" on this web site.
I am a 4-time cancer patient who has managed to survive since 1980. In that year, while finishing my doctoral program at the University of Notre Dame, I was diagnosed with a mucoepidermoid adenocarcinoma of the hard palate. I was only 33 years of age at the time. Needless to say, my wife and I were devastated with the diagnosis. Little did we know that it would be the first step in a long and arduous journey our family was to take.
To treat the malignancy, I underwent surgery and radiation therapy. In the aftermath, I suffered the consequences so common to those two treatments, especially the latter. Left with a hole in the roof of my mouth after my partial palatectomy/maxillectomy, I was fitted with a prosthesis which allowed me to eat and speak relatively well. By the end of 1981 I had graduated from N.D. and was well on the way to recovery, looking forward to my five-year goal of survival. Unfortunately, not all was to proceed as I had envisioned.
In 1985, a few months short of my 5-year anniversary, I was diagnosed with an osteogenic sarcoma in the upper jaw (maxilla). I was told later on that the malignancy in the bone had been caused by the 1981 radiation treatments. After more surgery and the further removal of my palate and maxilla, I tried to get on with my life. But within one year (1986), cancer struck again in my oral cavity. This time I lost the rest of my palate and maxilla and also had to have my right eye removed because the cancer had invaded the orbit around the eye. After more surgery and radiation, the doctors removed bone from my right hip in order to implant it into my maxilla, in effect making an artificial upper jaw with the inevitable prosthesis that allowed me to eat and speak at about an 80% level of competency.
Things went well after this third occurence of cancer. I moved to Houston, TX, and began working at the Federal Court. It was during this period of time that I met Dan G.
After a decade or more of being cancer-free, I thought my life had returned to normalcy and that cancer was a thing of the past. But, as you know, cancer is a persistent and persevering adversary that strikes when least expected. In 2000 I was diagnosed once again with the same malignant tumor I had had 20 years previously. The tumor forced me to retire from my job and concentrate full-time on my struggle with the disease. From 2000 until the present, I have undergone 7 surgeries. At first the doctors removed the fibula (one of 2 bones that attach the knee and ankle) from my left leg to rebuild my maxilla since the hip bone implant had been compromised by the tumor. After the operation I was in bad shape. I could not walk for a few weeks until I began using crutches. And I did not have a prosthesis yet, so I had to rely on a feeding tube in my stomach. My speech was horrible and people had a hard time understanding me. My facial deformity became worse as did all the emotional and psychological problems that go along with facial deformation. But afetr a few months I was beginning to recover well. It was at that time that the fibula implant in my maxilla died due to a lack of blood supply. Back to the operating room! This time I had the fibula from my other leg removed and implanted into my upper jaw. To the present time, the implant has not been rejected by my body and I am now waiting for a prosthesis to be made.
This is a brief review of my experiences as a long time survivor of cancer in the oral cavity. It does not go into many aspects of my experience such as how I dealt with the 4 occurences, how my family has coped, etc. I hope to talk about these aspects in future discusions with all of you. If there is one thing that I have learned over the past 22 years in my fight against this insidious disease, it is that one's attitude is extremely important in fighting the disease. The fight against cancer has to be waged on the physical as well as the mental level. It is an unceasing fight. Once a cancer patient, always a cancer patient. But the experience of having cancer is not all negative. It can provide the patient with different perspectives concerning those things in life that are deemed important. It can also unify families against a common enemy (as well as throw families into complete disarray).
I hope this brief insight into my cancer experience will prove worthwhile to those of you who read this. I would be glad to receive reaponses from you at your convenience and look forward to your support as well as offering my own to you.
Stay healthy,
Bill
_________________________
william a. phelan

Top
#29868 - 12/04/02 11:57 AM Re: Long Time Survivors
Donna Offline
Gold Member (100+ posts)

Registered: 03/20/02
Posts: 188
Loc: Plymouth, Minnesota
William.........Thanks for sharing your incredible story! I can only imagine the struggles each new cancer diagnoses brought to you and your family. Hopefully, you've had your last surgery and are on the road to a long healthy recovery! Look forward to more chatting in the future.....Sincerely, Donna
_________________________
SCC first time 1989, with a diagnoses of 'cancer in situ' removed lesion, no other treatments.
SCC recurrence 1997 of tongue and floor of the mouth. Stage III /IV Hemmiglossectomy (removed over 60% of tongue/ floor of the mouth), free flap, modified neck, RAD and Chemo(cisplatin, 5fu) simutainously.
Cancer free 6, yes, six, years!

Top
#29869 - 12/04/02 01:24 PM Re: Long Time Survivors
kcdc Offline
Platinum Member (200+ posts)

Registered: 08/25/02
Posts: 246
Loc: Boston, Ma
Bill:

Welcome to the board-any friend of Danny's is a friend of ours! Thanks for taking the time to share your story of great courage. My partner, Dave, is currently recovering from a neck dissection(Sept.) and 6 weeks of radiation treatment for a tonsillar tumor(finished this week).

I confess, I got a bit nudgy when I first read your post because Dave and I are just coming off the active treatment phase. I'm learning that the lurking fear of more cancer is real but can't be an all-encompassing thought that rules your life.The radiation oncologist told him this week "any reoccurence is likely to be in the first two years" and although I know that fact objectively, hearing it pushed a panic button in me that is easily activated these days.

In the effort to settle myself down,I've been trying to get in touch with the fear instead of letting it own me. I'm not sure if it's worked yet, but it's my current strategy.

So, upon reading your post a second and third time, I could gradually see past my own fear and recognize your bravery in the face of a what could have appeared to be insurmountable circumstances.I would appreciate hearing how you kept yourself emotionally intact in the face of your fear.

So, cheers to you and thanks for helping me with my mindset.

Best,

Kim
_________________________
kcdc
Wife of Dave,diagnosed with Stage III Tonsillar SCC,August '02
Modified radical neck dissection followed by radiation therapy
'There is glory and radiance in the darkness and to see we have only to look"

Top
#29870 - 06/02/03 05:19 PM Re: Long Time Survivors
eakern Offline
Member

Registered: 06/01/03
Posts: 5
Loc: Atlanta, Georgia
I have survived since 6/12/98. My 5 year mark comes up very shortly. I was 32 when diagnosed with a stage 4 tumor of the mandible/floor of mouth. My 1st free flap (from leg) failed and I was recontructed with a pectoral graft five days later. The pectoral graft was successful. I have had 5 surgeries since for follow-up reconstruction. So, far cancer free and hope the very best for others as well !
_________________________
StageIV SCC(mandible & floor of mouth) survivor since 6/12/98

Top
#29871 - 06/02/03 05:40 PM Re: Long Time Survivors
Anonymous
Unregistered


eakern,

Thank you for posting and YEAH for you...please come back and be a part this message board. I'm sure you have valuable insights you can share.

Welcome,
Dinah

Top
#29872 - 06/03/03 12:18 AM Re: Long Time Survivors
Mark Offline
Patient Advocate (1000+ posts)

Registered: 03/31/03
Posts: 1375
Loc: Minnesota, land of 10,000 taxe...
Eakern,

I am happy for you! laugh Your story is the kind of thing many of the new folks need to hear. (I need it too).

The one(and perhaps only) negative aspect of this kind of web site is that a great number of longterm survivors aren't posting here. Why? because they are off living their lives (which is great) but leaving the impression that few make it that far. Keep in touch here because a reminder once and a while is a great thing!
_________________________
Mark, 14 Years +4 month survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.

Top
#29874 - 07/21/06 06:38 AM Re: Long Time Survivors
lenny polizzi Offline
Gold Member (100+ posts)

Registered: 01/06/06
Posts: 107
Loc: rochester, new york
I am not yet a longf term survivor but plan on being one, and will live my life like I am one.
lenny

Top
#29875 - 07/23/06 12:20 PM Re: Long Time Survivors
DM32ASA Offline
"Above & Beyond" Member (500+ posts)

Registered: 04/09/06
Posts: 583
Loc: Washington
Larry,

Thanks for bringing this to the top.
I am only 6 months out from treatment. I am not sure if I qualify as survivor yet but so far cancer free.

I am just over whelmed by the stories here. God what Hell we all go through and some how try to be hopeful at the same time.

I am just trying to get enough strength to go to store, clean house, and cook..ect. I have no idea how you all go through this and work too!??

Bless you all
Diane
_________________________
2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015

Top
#29876 - 07/24/06 10:54 AM Re: Long Time Survivors
JOAN Offline
Senior Member (75+ posts)

Registered: 04/03/02
Posts: 80
Loc: Wilson, NC
Yes in my home town of Wilson NC there is a gentleman who is at least 20yr. When I was told about my cancer he was the 1st person I went to. His doctors told his wife he had 6 months to a year. They refused to live that way, and he is still with us today.
_________________________
JOAN

Top
#29877 - 07/25/06 11:09 AM Re: Long Time Survivors
Sherrie Lynn Offline
Supporting Member (50+ posts)

Registered: 08/07/02
Posts: 76
Loc: MI
My husband Dan will be 5 years July 31st. He wants a cake. My 13 yr old is mortified by that. She does not want to talk about it or even think about it. I think some of us have our way of dealing with things. I used to post all the time years ago, but I get so afraid the more I read and it is just easier to cope by not reading so much.
I am in awe of all of you that post on a daily basis, hoping I will be strong enough to do that one day. I just get by day by day and try not to think about it all the time.
Sometimes I think that makes me cowardly, people want to chat with survivors and care givers.
Danny sent many an email to me when I was scared and look at what he went through. I am just not quite there yet.
Thanks for listening

Oh well, 5 years hurray....
_________________________
Sherrie wife to Dan, Tonsil cancer survivor, Stage IV diagnosed July/2001

Top
#29878 - 07/25/06 10:48 PM Re: Long Time Survivors
JAM Offline
Patient Advocate (old timer, 2000 posts)

Registered: 04/01/05
Posts: 2676
Loc: Arkansas
Sherrie and Dan, Hooray Indeed laugh You are both real warriors to have gotten to this stage. [altho it sounds like your daughter was scared to death during Dan's tx.-and may still be scared-Tell her that your family is celebrating Life together- that it is like a family birthday everyday that you all have each other to love. I wish many many more for you all. Amy
_________________________
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

:

Top
#29879 - 07/25/06 11:02 PM Re: Long Time Survivors
JoAnne1981 Offline
"Above & Beyond" Member (300+ posts)

Registered: 04/05/06
Posts: 378
Loc: Princeton NJ
Congratulations on hitting the 5 year mark. It's so encouraging to hear about survivors. May you have many more celebrations. At 13 your daughter is probably mortified because she has parents and has to be seen with them - don't worry she'll get over it. Definitely go for the cake!!!
Regards JoAnne
_________________________
JoAnne - Caregiver to husband, cancer rt. tonsil, mets to soft palate, BOT, 7 lymph nodes - T3N2BM0, stage 4. Robotic assisted surgery, radical neck dissection 2/06; 30 IMTX treatments and 4 cycles of cisplatin completed June 06.

Top
#29880 - 09/26/06 10:43 PM Re: Long Time Survivors
coley1 Offline
Supporting Member (50+ posts)

Registered: 05/17/06
Posts: 57
Loc: Bowie, MD
I came online tonight to check the site which I used to do regularly. When we lost Danny Boy, I have to admit that I hid for awhile.
But, I want the new people on the site to know that there are happy endings to all of this. And I know my Danny would want me to share the good news.
My husband should not have been one of the good guys. He was diagnosed with stage III tonsillar cancer with node involvement. Had an upper lobe of one of his lungs removed.....which was benign, but caused so much anguish that it threw him into a full-blown alcohol addiction. After rehab, and miracles not deserved, he is 4 years out and happier, healthier and a better person than he was before diagnosis.
Love to all,
Mandi
_________________________
Stage III tonsil, Dx 8/14/2002,chemo and rad...reoccurance 8/3/07,Base of Tongue,vocal cords,stage IVA,total larynectomy and glossectomy 9/4/07 with pec flap...reoccurance Nov. '08 and Feb. '09 (positive margins remained after each operation) Second pec flap May 7, 2009. Still positive margins.

Top
#29881 - 10/23/06 10:57 AM Re: Long Time Survivors
MD50 Offline
Gold Member (200+ posts)

Registered: 10/13/06
Posts: 248
Loc: Boston, Ma.
Hello everyone 7 yrs and still counting. Today when someone says that every day is a gift, my response is that it is a wonderful thing if you really FEEL that way and I do. But believe me there were many days where I. said "what's your return policy because today really S%$@#D.Every person is truly different but there is so many ways we are alike. Together we can make a difference. Share yourself with others, Cancer survivors and caregivers are such special people and I grow so much as a person reading your struggles and finding the instant responses of people reaching out to help a person in need. Forget the # of yrs. try to keep count of the # of people that you had a positive impact on. My goal is one a day if I try to strech it to 2 I gag on myself for trying to be too nice. Why can't I find a Nasopharyngeal cancetr survivor then I can drive them crazy instead of all you guys.As my new friend Tim Stoj said Keep on Keeping on !!!
Mark.
_________________________
Mark D. Stage 3 Nasopharynx dx10/99 T2N3M0 40xrad 2x Cisplatin 5FU. acute leuk 1998.

Top
#29882 - 10/24/06 09:55 AM Re: Long Time Survivors
Plastics Dave Offline
Member

Registered: 02/10/05
Posts: 14
Loc: Gloucestershire, England
Hi...I won't bore you by writing it all again I did it under the thread "I can talk and I can sing"..15 years this November and going strong, I don't know the secret but a sense of humour certainly helps as does this forum with good people to talk to who you know actually understand what you are trying say. Good Luck coz you will need some occasionaly and best wishes coz you will need them on the black days..ps if you want to swap plates sometime just to see how someone else feels let me know....
Regards to everyone.
Gone sailing.
Dave

Top
#29883 - 10/24/06 03:18 PM Re: Long Time Survivors
Carol L Offline
Patient Advocate (1000+ posts)

Registered: 01/13/04
Posts: 1116
Loc: Baltimore, Maryland
Hey Dave, wonderful to hear from you, thanks for your post......WOW, 15 years, that is wonderful!!!!Take Care and keep that sense of humor going! Love, Carol
_________________________
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---

Top
#29884 - 12/02/06 09:52 AM Re: Long Time Survivors
Trinlif Offline
Member

Registered: 12/02/06
Posts: 2
Loc: Colorado Springs
By way of a bump, to add to the topic and in order to introduce myself: I celebrated 15 years of survivorship in March 2006. I'll post the entire story if y'all think it may help others (it has through advocacy and local survivorship programs in the past 15 years, no doubt).

Just found this site and board yesterday and look forward to being part of this community.

Best to all and remember to accentuate the postitive,
Kathy M
_________________________
SCC Stage IV, base and rear of tongue. Ressected 2/3 of tongue 3/14/91, flap implant at UCLA Medical Center. 36 radiation treatments and all clear since then.

Top
#29885 - 12/02/06 10:15 AM Re: Long Time Survivors
davidcpa Offline

Administrator, Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Registered: 09/28/06
Posts: 8311
Loc: Gulfport, Florida
Kathy,

Welcome and we're glad to have you.

I'm sure your story will be interesting, especially since your now 15+ yrs out. Lets see, I'll be 73, hopefully retired and worry free. I'll take that !!

When you share your story please start your own Post so that complete attention can be given to it.

Again, welcome aboard.
_________________________
David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.

Top
Page 1 of 3 1 2 3 >

Support OCF


Help OCF

Shop Amazon and Help OCF

Who's Online
1 registered (Afw1964), 31 Guests and 3 Spiders online.
Key: Admin, Global Mod, Mod
Forum Stats
10,748 Registered Members
23 Forums
16,605 Topics
187,610 Posts

Most users ever online: 273 @ 03/24/16 08:07 PM
Top Posters
ChristineB 9092
davidcpa 8311
Cheryld 5260
Brian Hill 4732
Gary 3552
Newest Members
Hutch, Luc, Afw1964, Fregola, jkricha5
10747 Registered Users
Brag Box