|
Author |
Topic: Long Time Survivors |
digtexas
Platinum Member (100+ posts)
Member # 320
|
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.
Posts:
112 | From: Houston, Texas | Registered:
Sep 2002 | |
|
rosie
Contributing Member (25+ posts)
Member # 384
|
I also would like to hear some long term survivor stories.
Even 10 years would be nice to hear about.
Rosemary
Posts:
43 | From: Central PA | Registered: Oct
2002 | |
|
Brian
Hill
Administrator
Member # 4
|
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.
click
here
--------------------
Brian, stage 3 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."
Posts:
367 | From: Laguna Beach, CA | Registered:
Mar 2002 | |
|
PJ
Member
Member # 271
|
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.
Posts:
12 | From: Texas | Registered: Aug 2002
| |
|
Brian
Hill
Administrator
Member # 4
|
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 3 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."
Posts:
367 | From: Laguna Beach, CA | Registered:
Mar 2002 | |
|
digtexas
Platinum Member (100+ posts)
Member # 320
|
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.
Posts:
112 | From: Houston, Texas | Registered:
Sep 2002 | |
|
William
A. Phelan
Member
Member # 452
|
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
Posts:
1 | From: Magnolia, Texas | Registered:
Nov 2002 | |
|
Donna
Platinum Member (100+ posts)
Member # 33
|
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
Posts:
129 | From: Plymouth, Minnesota | Registered:
Mar 2002 | |
|
kcdc
Platinum Member (100+ posts)
Member # 307
|
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
Posts:
127 | From: Boston, Ma | Registered: Aug
2002 | |
|
|
