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.

I also would like to hear some long term survivor stories. Even 10 years would be nice to hear about.

Rosemary

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

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.

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.

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.

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.........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

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

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 !

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

Eakern,

I am happy for you! 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!

I am not yet a longf term survivor but plan on being one, and will live my life like I am one.
lenny

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

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.

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 and Dan, Hooray Indeed 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

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

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

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.

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

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

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

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.