Margaret Barney, Executive Director of the MSplus
Foundation, told her story about being dually diagnosed with MS and then
cancer.
Barney said, “I was diagnosed with Multiple Sclerosis (MS)
in 1979 but my symptoms first appeared in 1977 when I was 29, just a few weeks
after my only child was born.”
Barney said, “After my baby was born, I got home from the
hospital with blurred vision. This tipped me off that something was a little
bit wrong. However, I went back to work four months after delivery. When I went
to my ophthalmologistto
get new glasses, I described the blurriness. I thought I needed a new eyeglasses
prescription. However, new glasses didn’t help. I returned to the doctor for a different
prescription. He asked if I had any numbness or tingling in my fingers or
trouble walking. I told him I had some numbness in my fingertips. I also was
experiencing some problems with my bladder. However, I didn't think anything of
that because I had just delivered a baby and thought it was related to her
birth.”
“My ophthalmologist conducted a simple test in his office.
He used a wooden pointer to delineate different colors on a wide expanse of the
poster and asked if I could see the tip of the pointer or not.” Barney said
that is what tipped him off because she could see some areas where the pointer
was but not all.
“After the testing, he referred me to a neuro-ophthalmologist
who conducted more sophisticated tests. During a visual field test, I looked into
a machine and she asked what I could see and what I couldn’t. It wasn’t an eye
chart. A little arrow went around in the field and you clicked if you could see
it. After the test, a print out showed what part of your vision is missing.”
Barney said the neuro-ophthalmologist didn’t say much about
the test results. She sent her to a neurologist. There she underwent physical
neurology tests where she had to perform various physical motions such as
raising her hands.
“This doctor told me that he thought I had one of three
conditions. One condition was a disease called optic neuritis; the second was Multiple
Sclerosis; and the third was brain tumor. I was pretty freaked out. I then had a
brain scan that ruled out cancer, and it became obvious that I did have optic
neuritis. Optic neuritis can be a
disease by itself but it often is an early symptom of MS.”
Because the study of MS was not advanced and there weren’t
diagnostic tools, obtaining a confirmed diagnosis was difficult. The MRI, which
is the tool most used now to diagnosis MS, was not invented. In the 1970s, the
only diagnostic tools were observation over several years or a lumbar puncture,
which is also known as a spinal tap. In a spinal tap, fluid is taken out of a
person’s spine and tests are performed to look for a certain protein.
To check for the MS diagnosis, Barney would have to have a lumbar
puncture. However, her physician thought that with Barney working full time and
with an infant, they would instead watch her symptoms. Her doctor thought the
lumbar puncture procedure might make her worse. At the time the only medicine prescribed
for MS was prednisone by mouth. Medications could be prescribed for managing
symptoms such as spasticity, depression and lack of energy.
“I was then a single mother, because my marriage didn’t work
out. My only symptom was my low vision. Then I started getting a little more
compromised. Even with my health issues, I experienced real joy in having a
baby. She was my inspiration to keep going on.
“My vision problems
affected my work because I was a writer and editor. It was difficult as printed
or typed pages would sort of drop out, and I made a lot of mistakes with
editing, which is not good when you distribute documents and press releases to
the public. Also, I had problems driving, and I had to commute 18 miles each way
from my home to the Texas Medical Center, which was particularly difficult and
draining.”
Barney was able to get some help with visual aids. She was
prescribed a strong microscopic type of glasses to use to read. To watch movies and TV, Barney wore glasses similar
to sports binoculars.
Even with the special glasses, Barney continued to have
difficulty at work. She had to print out documents in large type and have
people write large so she could see the copy.
Barney said, “I was very much in denial; I didn’t want my colleagues
at work to know because I thought my job might be in jeopardy. I worried that
my condition might be reported to the insurance company and I would lose my
insurance. I was fearful all the way around. I had a baby to take care of, and MS
is so unpredictable.”
“After a while, the doctors decided I had chronic
progressive MS, which these days is called secondary progressive.”
Unlike the more common relapsing-remitting variety of MS, in
which patients experience periods of increased symptoms, often followed by
periods of remission of symptoms, secondary progressive MS results in more
rapid and permanent loss of function, and is less responsive to drugs and treatments
that the relapsing-remitting form.
“When I had a new symptom, it did not heal and the vision
loss did not improve. Whatever physical capability I lost was lost. With each
new episode I would lose a little more. The losses were dramatic in the beginning
and it wasn't easy to deal with that.”
Barney said she got used to that phase of loss of vision and
learned how to get around. She met a very supportive man, Jerry Barney, whom
she later married. He knew she had MS and was willing and able to help her
through what she was experiencing then and whatever might come.
“I was diagnosed in 1979. In 1982 I got married for the
second time. In early 1983 as my daughter was getting older, my husband asked
me to quit my job in public relations so I would have more time to rest. Because
of the nature of my work it was becoming more difficult to do the reading,
writing and editing required.”
“After my marriage, my vision was relatively stable. I
didn’t have much increased trouble with it, and I only experienced incremental
losses in vision. I felt that I was coping with that pretty well.
“We moved to Washington state about three to four years
after my original diagnosis. In 1986, my symptoms were pretty much the same. In
1988, I started having some problems with walking whenever I was fatigued. One
leg or foot would drag. That started a whole new set of coping mechanisms and
feelings of loss, because I needed to use a cane for my balance. In public,
people would give me a wide birth. I was concerned about safety. I wanted to
make sure not to fall or get in the way of others, especially children.”
Barney’s main problem was that her vision was getting
incrementally worse. She was unable to drive at night, but was finding ways to
cope. She hired a driver because her daughter was in middle school and needed
to get to school, activities, and sports.
Later, when Barney’s daughter was in high school and could
drive herself, Barney still used a driver to get around the community for her
own activities, such as social engagements and volunteer work.
“In 1995 my husband went back to graduate school and had an
opportunity to go to Australia through a student exchange program. While I was with
him in Australia, my walking got a little worse that it had been. When we
returned to the states in 1997, I needed to use a walker and a scooter. At
first I was really down about this, because I thought it would make me look
like more of an invalid and call attention to the fact that I had MS. However,
both aids really helped and allowed me to do a lot more things. I could go out
more than when I used a cane. The walker and the scooter gave me more freedom I
wasn’t expecting.
“When my daughter married, I used a scooter to go down the aisle
at the church. During that time, I was more accepting of my symptoms. The reality
was I needed help. I was going along just fine with the scooter and walker and getting
on with my life.
“Then, in 1999 at age 52, I went to my family doctor for a
routine exam and he found a lump in my left breast. The lump was deep and close
to the chest wall. I had a second mammogram and the radiologist asked me to
wait. A sonogram showed a very large tumor in my left breast. The doctor told
me right away it was cancer.
“I was shocked and disheartened. I was already facing one
serious disease – MS – and the ongoing process of coping with those symptoms
and losses of function. It never occurred to me that I would have to deal with
yet another major disease in my life. Cancer was the last thing in the world I thought
I might have to worry about.”
“When diagnosed with cancer, I was taking a wide variety of medicines
for my MS. I was concerned about how the cancer drugs would interact with the
MS medicines I was taking. I called many
people in the medical profession, but no one could give me answers. This seemed
to be a new frontier. Physicians just didn’t have patients who were dually
diagnosed with cancer and MS.
Barney then contacted the Cancer Information Service. They
were extremely helpful with providing information about breast cancer. But they
said her best bet was to contact the Multiple Sclerosis Society. Barney was
very familiar with the local chapter and had gone to their meetings. When she
contacted them, they referred her to the national society in New York.
At first, when she called the National MS Society, she was
transferred around and had to talk with a lot of people. She told them she had
MS and was diagnosed with cancer and asked them what she should do. They told
her that the cancer treatment should take precedence, in the short-run, over MS
meds. That was the first definitive advice that she received about her dual
diagnosis.
Barney was referred to a surgeon who confirmed the cancer
diagnosis and recommended a lumpectomy. A brain scan showed that the cancer had
not metastasized there or anywhere else in her body. The cancer was contained
in her left breast.
“Before the surgery, my neurologist prescribed an extra
infusion of a corticosteroid I was taking for my MS, to help my strength and
stamina level. I went in for the lumpectomy. The tumor was called ductal carcinoma
in situ (DCIS) and is common and easy to treat, if found early. It looked like
I had Stage 1 cancer, but after the surgeon removed the lump out it went to
pathology. They were not able to get clear margin because the cancer was so
close to the chest wall. There were two microscopic areas in a blood vessel
just outside the tumor.
“The doctor found and removed two tumors during the surgery:
a stage one tumor the size of a golf ball, which was encapsulated in its own membrane,
and a stage two tumor the size of a dime, which was outside the membrane
(perhaps even attached to the outside of the membrane. The second tumor was a
surprise.
“I took another infusion of the corticosteroid before a
second operation, a sentinel node biopsy,
which dissected the two nodes closest to the tumor. There were no cancer
cells there, which was great news. The other good news was the cancer was estrogen
receptive, which meant the doctor could give me medicine to block the amount of
estrogen in my body to prevent the hormone from feeding the tumor and making it
worse.
“While healing from the surgeries, I had chemotherapy for
about three months on an outpatient basis. The contents of my chemotherapy
cocktail eliminated the need for one of the drugs I had been taking for MS –
the two drugs would have been redundant. After an additional nine weeks of
radiation, I started taking a hormone blocker. This regime put me in very good
shape.
“At that time, my husband and I starting thinking about what
we could do to help other people with MS who received a second diagnosis of
cancer. After my treatment was finished at end of 1999, I focused more clearly
and closely on getting information together. My situation was lucky in that,
while undergoing cancer treatment, I had a trusted neurologist treating my MS in
a fairly small town. He, my family doctor, my surgeon, and my oncologists all
talked with each other about my case and my treatment plan. For the first time,
I thought of them as a team—a team of physicians who could help me.
“The cancer treatment, especially the radiation, really
magnified my fatigue, even more than the MS already had. I lost a little bit of
my function in my legs. I wasn’t quite as agile as I was when using the
scooter. By 2002, I was using a wheelchair full time. I began a monthly infusion of Novantrone for
MS but, unfortunately, that medicine was discontinued after 6 months due to
ineffectiveness.
“My husband and I started the MSplus Foundation to address
the subject of dual diagnoses. The board of directors is comprised of my
neurologist, my oncologist, my husband, and friends with extensive experience
in volunteerism, leadership, and business acumen. The MSplus Foundation’s goal
is to support, inform, and educate people who have a dual diagnosis of MS and
cancer.
“Now, one of the ways I can support and educate fellow
patients is to facilitate a self-help support group, sponsored by the National
MS Society with input from the American Cancer Society. I have been trained by
both agencies to do this work effectively and am provided with support and
resources from both agencies.
“Today, I am fortunate in
many ways. I rely on a wheelchair for mobility, but am able to live at home
with the help of my husband and full-time caregivers. We spend our winters
enjoying the sunshine in our home state of Texas and our summers reveling in
the famous natural beauty of Washington state. My husband and I still travel,
volunteer, and have full lives with our children, grandchildren, and
many supportive friends. Truly, I am blessed.”