| Author |
Topic: Palliative
or curative treatments |
CynthiaS
Senior
Member (75+ posts)
Member # 161
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posted
June 12, 2002 03:40 PM
Hello
everyone,
My mother had her first radiation oncology appointment today.
However, the bad news actually came prior to that when I
picked up the chest CT and report that she had done Friday.
She has a 2 cm lesion on her right lung. The CT radiologist's
reading of this was that it was "metastatic" based on his
knowledge that she had soft palate cancer. She also has calcified
hilar nodes and calcification in the spleen and liver and
the presence of fluid "just inside or deep to the gallbladder
in the hilus of the liver which may represent a metastatic
focus".
So, we had the meeting with the radiation oncologist at Moffitt
who said "they" have decided that she should be treated with
once daily radiation for 35 treatments with chemotherapy
added at the beginning, middle, and end of radiation. And
then he said "Oh, by the way, there's also a lesion on your
lung. You'll have to be seen by the Thoracic surgeon to determine
whether it's metastic or primary. But I think it is primary
lung cancer based on the film". I asked why the recommendation
was for once-daily radiation instead of twice and he said
there was no evidence that twice-daily was more effective.
I guess we read different reference materials.
My mother and I had already discussed this prior to seeing
this doctor. I told her that there was no way any doctor
in the Moffitt Thoracic clinic was touching her - been there,
done that! And surprisingly she agreed to a second opinion
elsewhere.
Fortunately, I have her CT's and reports BUT Moffitt refused
to give us her pathology slides. They said they "had" to
be returned to the original laboratory. I told her that I
would get the slides from the "original" laboratory and she
could do whatever she wanted with the ones she had!
For now we have decided to find a local pulmonologist to
have her lung biopsied so there is no "guessing" as to what
it is. When that is determined, we will then decide where
we want to go for another evaluation. We must find some doctors
who will show some compassion and answer "honestly" the questions
we have.
I would greatly appreciate any info from anyone that has
dealt with head and neck cancer metastases or two primary
cancers. Truthfully at this point, we are painfully aware
that we are now talking "palliative" not "curative" but I
do want my mother to have the proper care for what time she
has remaining.
Sorry for the length. I needed to vent. Thanks for listening.
Cynthia
Posts: 79 |
From: Florida | Registered: May 2002 | |
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Joanna
"Above & Beyond" Member
(200+ posts)
Member # 41
|
posted
June 12, 2002 09:17 PM
Oh Cynthia!
I am just so very sad at this news. At the same time I applaud
your efforts and very smart actions. Your mother could not
have a better advocate. Many years ago I played that role
for my mother for a different cancer, and can report that
pitching an intelligent fit should get good answers, or you
take your questions elsewhere. From my view point, you are
doing everything right in very difficult circumstances. Please
know you have friends here who have "been there, done that" and
we understand. Vent anytime.
Joanna
Posts: 345 |
From: Pacific Northwest | Registered: Mar 2002 |
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Brian
Hill
OCF Founder
Member # 4
|
posted
June 13, 2002 12:46 PM
I'm the
guy that always has something to say. The facts come easy,
the recommendations for treatment are on the tip of my tongue.
I don't think that the phrase "economy of words" and my name
have ever been used in the same sentence. But when I read
posts like this I am at a loss. Obviously I am very sorry
to hear about where this is headed for not only your mother,
but for the whole family. I wish that something inspirational
would flow from me, but every time that another person is
taken from us by oral cancers and their metastasis, what
I feel is not only empathy, but also frustration, perhaps
even anger.
My wife and I have discussed the “end game” as it relates
to my future, and as these ideas relate to your situation,
you may consider them. I never wish to give up hope, as sometimes
that is all that is left us. But I am also a realist, and
a person with a science background, two factors that influence
my actions greatly. While there is a reasonable chance for
driving something in to remission, my desire is to fight
with every thing that I have inside and available to me through
outside sources. But when the battle is obviously lost, I
do not wish to be subjected to extensive chemo, radiation,
or radical surgery to buy days. It is all about the quality
of those days and not the number of them to me. Palliative
care to me is not just about adding days, but coming to my
end in comfort with my senses and emotions intact. In a state
of mind and condition where I can share my feelings with
those I care about in a lucid manner, and be free from pain.
I never thought about this before my own cancer experience,
after all, we all think subconsciously that we are invincible,
and whatever our rational conscious mind thinks, the accidents
and the cancers always happen to someone else. But I do think
about it now. I have watched several others who were losing
their spouses encourage the use of every medical tool available
in order to stave off the inevitable. Some of those patient's
last months were less than pleasant. We all know the effects
of many of the current cancer therapies. So when I have reached
that point, I do not wish the doctors to subject me to so
many last ditch treatments, that both I and those that I
care about are put through the physical and emotional wringer.
I want my last days to be intimate with my friends and loved
ones, and not spent in some hospital room attempting to buy
a week or two more at the cost of the quality of the time.
You and your family are in the thoughts of many of us here,
and we wish you all the best possible future, no matter how
long it may be.
Posts: 662 |
From: Laguna Niguel, CA | Registered: Mar 2002 |
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Brooke
Supporting
Member (50+ posts)
Member # 104
|
posted
June 13, 2002 07:15 PM
Brain
put it in perfect words....having been through a similar
battle with my mom not long ago, I couln't agree more with
what he says. I have to say, in my mothers doctors defense,
that he assured her that he would want the same. If there
is something that can be done that will be beneficial, not
only adding on some time, that's a different story. However,
if it is only a matter of time, comfort and peace of mind
for the family as well as the patient should be priority.
My family all got a chance to talk intimately with my mom,
and tell her all the things we ever wanted to say. And even
though watching someone you love so tremendously get ready
to "move on" to their next level is a miserable thing, it
is also a great chance to speak openly and honestly about
feelings, fears, hopes, and love. I know for sure that I
have no regrets..because I said all I needed to say. That
does give some peace of mind in the long run...trust me.
My prayers and thoughts are with you, your mom and entire
family.
brooke
--------------------
Hope is the one thing no one can take away from you!!!
Posts: 52 |
From: Toms River, NJ, USA | Registered: Apr 2002 | IP: Logged |
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