[2-2005] Hi, my name is Will Ainsworth and I am approaching 5-years cancer free.
My story: I am an Aircraft Maintenance Officer in the Navy. While on an
extended deployment at sea in 1999, I noticed my voice getting weaker. At times,
I could barely talk above a whisper. I was working long hours and getting very
little sleep, so I attributed it to fatigue. At the end of deployment (December
1999), while driving cross-country to my new duty assignment, my wife Jan
noticed a lump on the right side of my neck. It was a bit over an inch long and
about a 1/2 inch wide. The lump was soft and did not seem attached to anything,
so I figured it was just an infected lymph node or gland, though the thought of
a metastasis of the Prostate Cancer did cross my mind.
A few weeks later, the lump was still there, so I went to see a doctor about it.
Because of my prior history of cancer, the doctor sent me to an Ear Nose and
Throat specialist. The ENT did 3 (!!!) separate needle biopsies, all of which
came back either "inconclusive" or unreadable. Because the needle
biopsies were not working out, the ENT decided to do a "rigid scope"
throat exam under anesthesia. In case he should find cancer during the
procedure, the ENT discussed the possibility of a partial neck dissection. He
was a great doctor and I had every faith in his judgment and skill, but I told
him that I did not want anything done until I knew exactly what I had and could
weigh all my options. A few years earlier, a friend of mine was diagnosed with
throat cancer and died after undergoing an ugly year of radiation and extensive
surgery and I wanted to carefully think this thing through. When I woke up in
recovery, the doctor informed me he had found a suspicious looking area at the
base of my right tonsil "fossa" and the sample he took had come back
from pathology positive for SCC. Based on the pathology report and the degree of
lymph node involvement, I was graded as Stage IV. The next day, we talked about
the characteristics of the SCC and preferred treatment options. The ENT told me
he did not recommend radical neck dissection because of the staging of the
cancer and the potential side effects, and he instead scheduled me for a consult
with a Radiation Oncologist.
I did a lot of research before deciding on what treatment I was comfortable
with. I found a lot of info on the web, including BDS, WebMD, SPOHNC and Pub Med
(www.ncbi.nlm.nih.gov/entrez). Pub Med is filled with data, including detailed
analysis of various treatment options. I found an encouraging study on combining
radiation with chemotherapy in a simultaneous treatment process, which I
discussed with my radiation oncologist. He had been involved with a similar
course of treatment and considered it a viable option. He did, however, warn me
that he had a previous patient that did chemo and radiation together, and had
ended up being hospitalized and ending chemotherapy early and delaying the last
few weeks of radiation due to the deterioration of his health. I told the doctor
that my biggest concern was metastasis because of the lymph node involvement. If
the cancer was in my lymph system, was there a chance it could have
"traveled" outside my neck area? That's why I thought concurrent
chemo-radiation would be my choice and in view of my otherwise good health, I
was willing to give it a go. With that, I went off to the chemotherapist for
consult, and from there over to Dental for pre-radiation exam. Unfortunately, I
had large fillings in all my molars and the Dentists did not want me radiated
unless I had them removed. Because of the need to heal up a bit after molar
removal and other scheduling issues, I did not begin treatment until nearly a
month later.
My treatment consisted of 7 weeks of radiation, with concurrent chemotherapy
during the first, third, fifth and seventh weeks. The chemotherapy was
Carboplatin combined with 5-fluorouracil [5-FU). The Carboplatin was
administered continuously for 24 hours via a pump I wore around my waist. The
5-FU was given in the hospital and usually took 2 or so hours. My experience
with radiation treatment and the side effects I encountered were a near
mirror-image of what Barry describes, and it was very calming to be able to
"preview" what was coming next and compare his experience to what I
was going through. THANK-YOU, BARRY, FOR PUTTING YOUR STORY ON THE WEB FOR ALL
TO BENEFIT FROM. You are truly an inspiration and I can't thank you enough. I
did have some side effects and experiences different than Barry's and I think
most, if not all, were caused by the synergistic effects of combining the
chemotherapy with the radiation.
The inflammation (mucositis) of my mouth was so severe that I dreaded eating. I
couldn't even tolerate the "Ensure" drinks, and I dropped from 175 lbs
down to 142 by the end of treatment. My oncologist wanted to put a feeding tube
in, but I kept putting him off. In retrospect, I should have done that at the
very beginning. I have since read that there is a correlation between excessive
weight loss (anything over 15%, from what I read) and the success of treatment.
A month or so after ending treatment, the inside my mouth began to break out
with dozens of small "water blisters," usually as I was eating or
immediately after. The doctors tested it and confirmed it wasn't a viral
condition, and the blistering eventually quit happening after about 3 months. My
theory is that as I began to heal up from the radiation and the chemotherapy, my
saliva started to come back to a small degree and I think the blisters were
formed by scarred saliva ducts blocking the saliva flow. Just my theory -- I
don't know for sure.
Six months after treatment ended, I discovered a lump underneath my chin. It was
hard, round and about twice the size of a "BB". Again, the needle
biopsy was inconclusive, so the ENT surgically removed it and thankfully, it was
"OK". A year later, I discovered another hard lump about an inch long,
directly under my right jaw line. That was an especially scary experience
because the needle biopsy came back suspicious for adenocarcinoma, and the
doctor thought it could possibly be a metastasis of my previous Prostate cancer.
That lump was also surgically removed, and it turned out to be a swollen saliva
gland (wish I could have kept that…). I simply think the cells in my neck are
now just "goofy looking" from the radiation.
Another neck problem is scarring of the skin from the radiation. At the end of
treatment, there was a very defined dark red circle where they concentrated the
radiation in the area where I had the affected lymph node. That red circle has
since spread to a large patch covering about a third of the right side of my
neck, and it is now even starting to show on the left side. My ENT tells me the
redness is caused by the very small vessels in the skin hardening from the
continuing effects of the radiation and that it will continue for years. It
looks like I've been burned.
A little over a year after treatment, I developed aphthous ulcers in my mouth.
They are a near-continuous presence now, particularly in the cheek area.
Although not really painful, they are irritating. I eat a lot of spicy foods,
and that might be part of the problem. Also, I can't fully open my mouth - I can
only open it a bit less than two inches. I do exercises to keep it from getting
worse. And of course I have dry mouth, but that has gradually improved to the
point where I can get by without constantly chewing gum. However, I can rarely
swallow a bite of food without a sip of water. Last but not least is persistent
low-grade fatigue. I have never felt quite as strong or energetic since the
treatment.
I'm looking forward to hitting the 5-year mark in May. I am doing great. I don't
dwell on cancer, but I am aware that my life is different. I hate that I'm only
50 years old and have had two cancers. I miss my prostate! I miss my spit! I
miss my molars! I hate being such a slow eater! Yes, I'm pissed that cancer has
had even these small impacts on my quality of life, but all-in-all LIFE IS STILL
VERY, VERY GOOD. I owe my health to some truly superb Navy and Air Force
healthcare professionals. The support of my boss and co-workers during and after
my treatment was extraordinary and a huge contributor to my recovery. But most
of all, I owe my life to my wonderful wife, Jan, who got me through two very
tough times fighting cancer. Without Jan, I am certain I would not be here
typing this story about something that is now quickly becoming nothing more than
an unpleasant, fading dream.
Will Ainsworth