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The best way for me to describe my feelings when I was first told my diagnosis
of colorectal cancer is to equate it to being hit in the forehead with a two-by-
four. I was numb, in shock, and it took quite a while for me to be able to
process any information regarding my disease and treatment options. |
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Because I have a very accepting and loving wife, who at the time was a 14-year breast cancer survivor, I remained very optimistic regarding the outcome
of my surgery. It was probably a year and a half after the surgery before I
experienced a brief period of anger and resentment regarding the changes
brought about in my lifestyle by the colostomy. Since that time, I have learned
to appreciate and be thankful for having been given a second chance to live a
healthy life. |
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I was shocked, angry, disappointed and felt powerless. All I could think was,
“I am going to die.” |
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I was depressed for two or three days after I was diagnosed, and I expected
to die. Then I got mad. I decided that I was in charge of my healthcare.
I questioned the doctors, went to a medical library and refused to accept
defeat. Cancer blinked first. |
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I also have chronic lymphocytic leukemia — CLL — so some of the surprise
was gone this time. Mostly, I got mad, sad, glad and any other feeling you can
have in a very short time span. I guess, also, that I had learned what questions
to ask, so that helped. |
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Anger, denial and then the decision to fight it in a positive manner. I feel it’s
very important to have another person with you most times in the beginning
when consulting doctors, to take a lot of notes. For me, even though I had
some professional medical experience decades ago, I was overwhelmed with
the information. |
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When I was first told about my cancer, I was devastated even though I was
somewhat prepared for the diagnosis. I think I was in shock and just did as I
was told. It was like being in a fog for the first few months of treatment, and
then slowly I came around and started asking questions. |
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My first reaction was that I might not live much longer but that feeling did not
affect my ability to understand what the doctors told me. |
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I was shocked and a bit in disbelief. However, normally I am a positive
person, and I adjusted to the diagnosis with my usual degree of humor. But
because I am so active, I wanted every possible avenue investigated before
undergoing surgery that would result in a permanent colostomy. At no time
did I ever doubt the recommendations and decisions of the oncologist,
radiologist and surgeon. |
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The doctor’s tone, facial expressions and body language made a big difference
in my understanding the facts. Most of us have read similar “facts” in
the newspaper or on the internet, but the concepts took on a much more
clear meaning when he presented them logically and calmly. |
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After surgery, the GI doctor came to me and said that everything looked good
and further treatment would not be necessary. Then, two days later, he came
back and said that the lab results showed one lymph node was affected and
I would have to have chemotherapy and radiation therapy. The oncologist and
radiation oncologist painted the best-case scenario of chemotherapy and radiation
therapy. They told me I would be able to live a fairly normal life, be able
to work and just be fatigued. I experienced just the opposite, which ultimately
led to the loss of employment, and was very frustrated with my physicians for
not explaining to me all of the possibilities of treatment. However, my day-today
treatment was compassionate and thorough. |
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My interactions with physicians have been positive overall. It does take time
to develop a rapport with them, which I think patients need in order to believe
that someone else is on their side. The other great positive is my oncologist’s
willingness to email me answers to my questions. I have emailed questions
periodically because it’s hard to contact him by phone. All patients want to
hear that they are doing well, but I think telling them this is a hard thing for
doctors to do. I know you can’t compare patients at all, but it would be nice
to hear, “You are doing well with your treatment.” |
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For the most part, I am satisfied with my interactions with my physicians.
I like the fact that they speak in terms I can understand and use analogies
to help explain things better. I also like that I can look at my x-rays and CT
scans and actually see what is going on inside my body and that my doctors
are upbeat and aren’t gloomy when sharing news with me. Sometimes I think
they can be a little vague with the information, which frustrates me because I
have to ask a lot of questions. |
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I found my physicians to be very helpful. My treatment was explained, and I
felt comfortable with the protocol chosen. |
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I was not very satisfied, especially with the surgeon. He was arrogant and very
matter of fact, and due to this, my husband suffered needlessly. Ultimately,
we changed surgeons. We were not informed that the surgeon we had was just
a general surgeon and not a colorectal surgeon. Our oncologist is not much
better, and we will be changing after the first six months of chemotherapy are
complete. |
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Patients who don’t have an assertive personality may actually feel guilty or
disrespectful in seeking a second opinion. It may be helpful for the initial
doctor to encourage patient education and the reasonableness of obtaining
another professional viewpoint. |
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At first, when I was a less-informed patient, frustrations ran high because
the doctors did not take the time to explain to my satisfaction what was
happening to me or what some of the things were that I should expect. The
more educated and informed I became, the more I found it easier to ensure
I received the data from the doctor that I wanted. Learning to listen with a
minimal personal agenda was key. |
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Initially, my experiences with my gastroenterologist, oncologist and radiation
oncologist were negative. Since then, my interaction with all the doctors has
been positive, but additional training in supplying information to patients is
needed. Some terms are on a high level, and because this is a change in a
person’s life, an explanation about what has happened, how it has happened
and what will happen must be made in common terms. Also, once a form of
treatment is recommended, details of what happens to the body, side effects
and physical and mental changes should be explained. Of course, patient
involvement in reading and talking to other patients and doctors is important,
but most of this information should be provided by the doctors. |
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I found my team of doctors to be very good listeners, and they answered most
of my questions. I wanted to have a detailed understanding of my illness. |
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My initial interaction with the physician who diagnosed my cancer was probably
the worst experience in my life. My entire family and I were completely
traumatized, including my children. The only good thing that came out of that
experience is that I now realize that had that physician been kind, we might
have followed his advice. Cancer is a very personal illness. |
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I felt my physicians showed great customer service and bedside manners.
They took their time and explained to me what was going on, and they drew
diagrams to further assist me in understanding. They also provided me with
names of survivors to contact for encouragement and a list of books to read.
By touching my shoulder and legs when I laid in bed, they helped me to relate
to them as human and not larger than life. |
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I had a great surgeon who told it like it was. All my doctors were truthful and
very straightforward. My oncologist and I had a very good relationship. |
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In watching the panel today discuss disease-free survival, it occurred to me
that my family member is fortunate to be free of colon cancer after her surgery,
but even so, she is not “healed.” After three years of good health, she
is still fearful and depressed. She thinks of herself as a sick person who just
happens to be well right now. It is almost as if she is waiting for a recurrence
and hasn’t gone back to a well-balanced, healthy outlook. This isn’t an issue
for the surgeon, but maybe it is something for other doctors to recognize
and then refer the patient to a nurse educator, social worker, psychiatrist, et
cetera. In short, the tumor is gone, and physical health is restored, yet the
patient is not healed in the whole sense with regard to quality of life after
cancer diagnosis. |
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