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Author |
Topic: Odds
Of A Recurrence |
Sherrie
Lynn
Member
Member # 275
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Hi.....My husband had tonsil cancer in 7/2001,radical neck
dissection, Chemo and Rad.
He goes to the Dr every other month and just had a chest CT
scan 2 days ago. This nurse who was putting in his IV asked
about his cancer and said
"Has it come back yet?" ...Dan thought maybe she thought his
CT scan was because of a recurrence, but then it started to
bother him. Does it ALWAYS come back??? Sooner or later? Are
the odds of a second primary or metastisis higher?
Then after the scan a different tech or dr came out to take
out his IV and asked how he has been feeling. This starting
to make him nervous. The man asked about his cancer and treatments.
Dan said they didnt' ask all these questions with his last
scan. Is Dan reading too much into these comments?? He will
find the results on Monday.
Thanks.
Posts:
15 | From: MI | Registered: Aug 2002
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Joanna
"Above & Beyond" Member (200+ posts)
Member # 41
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Sherrie Lynn, if anyone asked me "Has it come back yet?" I
think I would explode! That has to be the most insensitive
remark of the year. As a recent patient, I have chosen to
believe that it will NOT come back in my case, and I know
that it does not always. I seriously believe that someone
should get back to that nurse and explain to her how truly
awful comments like that are. I hope you have her name, and
if you don't want a confrontation, at least write a letter
to the head of the department where she works. I am just steamed
that anyone would say that to your husband, although I am
sure he handled it better than I would have. Hang in there!
Joanna, Mad as a Wet Hen
Posts:
213 | From: Pacific Northwest | Registered:
Mar 2002 |
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Brian
Hill
Administrator
Member # 4
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Don't read too much into the comments by a couple of technicians.
While oral cancer has a higher recurrence rate than most other
cancers, it is not inevitable that you will get it again.
The first two years post treatment have the highest risk,
at five years the statistics for most oral cancers to end
up in recurrence drop to about a 13% chance. Then...get this,
they start to go up again!!!! About 2% per year. This is a
function of statistics and may not be your personal reality.
I too was shocked recently when (now approaching my 5 year
mark) I thought I was statistically out of the woods. One
of our advisory board members and I were talking about the
numbers, and he says, "Well the bad news is it is going to
start going up now (the chance of recurrence as a percent
of those with previous SCC). What skews the statistics is
that as you get older, your immune system becomes more incompetent
and each passing year makes things worse as a result. There
is also an issue of comorbidity, again related to ageing and
your chance of developing other diseases.These statistics
are drawn from SEER numbers, and of course do not apply to
everyone. The fact is that statically older people get this
cancer, and it is only natural for their deaths at 70 or 80
or whatever to throw the death rate numbers. But diligence
in early detection is the key word you need to remember. FOREVER
you will be on recalls, and forever you will be waiting for
the other shoe to drop. Hopefully it will not fall for decades,
or at all...
Here are the actual facts without my editorializing. Getting
a lung cancer or a cancer of the esophagus is strongly correlated
with a previous carcinoma of the oral cavity. The actuarial
incidence of second malignancies of the upper aerodigestive
tract increases each year that a patient survives the index
cancer. In the most quoted study, second primary cancers developed
within 5 years of the successful treatment of the index cancer
in one third (33.5%) of patients with stage 3 or 4 squamous
cell carcinomas. A second study identified an overall 13.5%
incidence of secondary primary malignancies in a study of
127 patients with head and neck SCC. Lung tumors accounted
for the majority (41%) other head and neck cancers accounted
for 35%, and esophageal accounted for the remainder (24%).
Death rates from these secondaries are significantly influenced
by the primary treatment, as a full course of radiation included
in the first treatment precludes its use the second time around
and treatment of the secondary is frequently limited to surgical
intervention. If you came to oral cancer through tobacco you
are on the wrong side of these numbers, as smokers in general
have poorer outcomes. The term "field cancerization" has been
used to describe the carcinogens in tobaccos effect on large
areas such as the aerodigestive tract. Oral cancer being only
one of many sites that a smoker may develop a tobacco related
malignancy.
Someone will ask, so here is what SEER numbers and the resulting
statistics are: SEER is the abbreviation for the National
Cancer Institutes Surveillance, Epidemiology, and End Results
programs. They are statistics gathered from 11 specific areas
of the country designed to be representative of the nation
as a whole. There is no method for tracking the individual
incidence of any given disease, and therefore the NCI uses
this sampling method and extrapolates national incidence and
data from it.
--------------------
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:
366 | From: Laguna Beach, CA | Registered:
Mar 2002 |
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Sherrie
Lynn
Member
Member # 275
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Thank you both for your replies....Dan now says he isn't worried,
he was just jolted by the comments made. He came home quiet
and upset, so I know this effects him more than he will ever
admit. He has always been very "I have cancer lets take care
of it, if it comes back, well we do what we can then" But
I don't believe he feels that way, he won't even come clean
with me on his feelings.
Another wonderful member here emailed us and said we could
find out the results sooner than later, but Dan wants to wait.
Christmas shopping this weekend and he chooses to be positive
and have a good weekend. I wish we would have waited until
January to get this thing done!!
Thank you
Sherrie
Posts:
15 | From: MI | Registered: Aug 2002
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kcdc
Platinum Member (100+ posts)
Member # 307
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So, Joanna-what does a mad wet hen look like? Great analogy
and point well taken because there is no place for insensitivity
in our world.
Sherrie: as always, I am pulling for you and Dan and have
the pom poms ready for good news. Concentrate on Christmas
and each other.
Okay, so can I be mad as a wet shop lifting Winona Ryder(wearing
a very expensive headband) who got caught???
Best,
Kim
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kcdc
Posts:
127 | From: Boston, Ma | Registered: Aug
2002 |
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digtexas
Platinum Member (100+ posts)
Member # 320
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Brian,
I asked you a question in email that I agreed to post here
concerning mortality. I have been wondering since the Doctors
never seen to talk about it: what exactly kills us? My oncologist
in the beginning told me that I was lucky that head and neck
cancer usually stay local and don't travel around the body.
My cancer is now gone. Yet, it did reach 3 lymph nodes in
the neck and I am naturally concerned, as your earlier post
suggested that it indeed does travel to the lungs and brain,
as happened with George Harrison. My related question is,
how do we die? Do new oral cancers choke us to death, is it
from brain cancer, or what?
Thanks,
Danny G.
Posts:
111 | From: Houston, Texas | Registered:
Sep 2002 |
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Rosalie
Member
Member # 378
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Brian,
I know you haven't had a chance to be in touch with me because
of your busy schedule so I thought I would send you an e-mail.
The results of my neck dissection was negative Squamous Cell
Cancer, but positive for thyroid cancer. 28 lymph nodes were
removed. I now need to have my thyroid removed in January.
My concern is my doc. said I do not need radiation because
my lymph nodes were clear. What is your feeling aboout that.
Also, I have a lesion on the roof of my mouth that my doc
is aware of. He seems to think it looks like an irratation,
but he is watching it. I have had it for over a month. It
feels like it is getting larger. I am insisting on having
another biopsy. I feel so hyper sensitive when it has to do
with anything in the Oral Cavity. I feel like I am on a mission.
Having been diagnosed with Oral Cancer in October has made
it very difficult for me to focus on anything else. I see
things so differently now.
I hope you are feeling well.
I am still waiting for the donation envelopes to arrive. I
really would like to help in anyway I can.
Rosalie
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Rosalie
Posts:
8 | From: Philadelphia | Registered: Oct
2002 |
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Brian
Hill
Administrator
Member # 4
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Danny with your permission I will answer your question on
the board. I think that it is an important one, and both it
and the several answers you will probably get will be of value
to others. As to its effect on those that read the message
board, all of our lives have to be balanced between hope and
reality. While to some ignorance may be bliss, the more we
know about something the better chance we have of coping with
it, be it disease or death. This of course requires an attitude
that pulls your head out of the sand and forces confrontation
with sometimes disturbing concepts such as our own mortality.
Many of these ideas instill fear and require courage to cope
with them. Just remember that courage is not the absence of
fear, but rather the judgment that something else is more
important than fear.
I find your doctors comment curious, and I do not believe
it to be valid, just ask Dinah who is currently fighting a
liver metastasis from an oral cancer primary. In part perhaps
the doctor is correct in those that have their cancer caught
early. The primary metastasis of SCC oral cancers is the cervical
lymph nodes. So given this, he/she is correct in saying that
it stays local, or at least in the head and neck region. But
once you have cancer cells within your lymph system, even
though local to the primary, they have free access to everywhere
that system can take them. which is unfortunately places very
remote from the oral environment. The statistics of secondary
primaries are skewed by the fact that 75% of oral cancer patients
came to the disease through the use of tobacco. In my previous
post I mentioned the term field cancerization. Smokers have
thoroughly contaminated their aerodigestive tract with the
carcinogens from tobacco. Obviously the oral environment gets
the first dose, but so do the lungs, and the larynx, and even
the esophagus, though to a lesser extent. It MAY be that field
cancerization has started malignancies in all these tissues,
and the oral cancer is simply the first to develop. This would
mean that in some cases, oral cancer does not metastasize
to the lungs for instance, but the secondary primary is just
another cancer caused by the same carcinogens, but occurring
at a later date. This is hypothetical, since the exact answer
to this question does not exist, but it may be valid since
statistically there is a slightly smaller chance of having
a secondary primary if you came to your OC via a viral cause.
Once in the nodes of your neck, a metastasis to areas downstream
from those nodes is possible, and that would lead you to a
lung metastasis from an oral cancer primary. Your doctors
comment regarding lung cancer metastasis is another exercise
in a partial fact. Once you have a lung cancer, whether it
is your index primary or a secondary primary from the oral
environment, the cancer cells now have access to the circulatory
system because of the extremely dense vascularization of the
lung alveoli. The circulatory system, like the lymph system
can take the malignant cells virtually anywhere in your body.
One of the closest and most highly vascularized areas is the
brain. It is no reach of the imagination to see the connection
between highly vascularized areas and metastasis of lung cancer.
George Harrison's cancer was an oral primary with node metastasis
from tobacco use, which later became a lung cancer, which
later became a brain cancer. I could site other examples,
but his pretty much tells the story. As to what kills us,
it is not an issue of a cancer choking off anything, but the
proliferation and metastasis of those cancer cells to vital
organs that brings death.
In my own case, my statement that I came to my cancer as the
result of HPV is a deduction, not a clinical fact supported
by biopsy. I had none of the risk factors for oral cancer,
never smoked, only drank lightly, was young statistically,
etc. Three years after treatment as I began to research information
for the newly formed OCF, I began to attend lots of cancer
conferences. At these conferences cervical cancer was always
on the table. The same cancer (SCC) which attacks more than
90% of OC victims, is also responsible for more than 90% of
cervical cancers. The tissues of the cervix and the oral environment
are the same tissues. Then the Hopkins study came out which
was designed to disprove the link between the two cancers
and actually proved it instead. I asked my wife to have an
HPV test at her next PAP, and she turned out to be positive
for HPV16/18. This means that she is at an extremely high
risk for cervical cancer. HPV is sexually transmitted, and
whether I gave it to her from one of my previous sex partners
or she to me is an academic issue. But the deduction is logical.
Since the Hopkins study, which was after my treatment, there
are many institutions that are sampling oral cancer tissues
for the presence of HPV to determine the extent of the problem.
In a few years there will be enough data to publish something.
But anecdotally, every doctor that I talk with is commenting
on the rapid increase in non-smoking, young OC patients. There
is the possibility that a highly sexually active population
(pre AIDS) was a contributing factor to the spread of HPV,
and now these cancers in non-smokers. That is pure speculation
though. It is estimated that 40 million Americans have some
form of HPV but how many have 16/18 cannot be determined.
Most other variations of it are completely benign. You can
be tested for HPV, but at this stage of things it is an academic
question.
--------------------
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:
366 | From: Laguna Beach, CA | Registered:
Mar 2002 |
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digtexas
Platinum Member (100+ posts)
Member # 320
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Brian,
Thanks so much for your informed and very thorough answer
to my questions. As unpleasant as oral cancer is to deal with
, I guess that living beneath the " sword of damocles " just
goes with the territory once the original cancer has been
treated. At least we have something that most people lack...a
real awareness of our mortality that should make us live more
meaningful lives.
Danny G.
Posts:
111 | From: Houston, Texas | Registered:
Sep 2002 |
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