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last updated: 7/16/05
RECOMMENDED
FOLLOW-UPS, RADIOLOGY TESTS / IMAGING STUDIES, OTHER DIAGNOSTICS FOR ACC
PATIENTS
Due to the propensity
for acinic cell carcinoma to recur or metastasize (grow in a different
area from original tumor site), we strongly recommend a vigilant program
of follow-ups and diagnostic tests for all acinic cell carcinoma patients.
The need for this vigilance increases even more with a history of:
a.
large primary tumor (2 cm. or larger) before removal
b. multiple primary tumors
c. insufficiently removed primary tumors
d. tumors surgically removed without adequate “clean margins”
e. any noted or suspected residual disease
f. presence of tumor in lymph nodes or blood vessels
g. any known or previous (local) recurrences
h. any known or previous metastases (distant/distinct sites from primary
tumor site)
i. diagnosis of high grade variety (often indicated by poorly differentiated/
undifferentiated pathology results, but also by noted speed of progression)
The
final item on that list indicates a MUCH more aggressive form of the cancer,
and requires IMMEDIATE and AGGRESSIVE treatment. The low grade form of
ACC is less aggressive in terms of speed, but still has great likelihood
for recurrences or metastases, often MANY years later. Recurrences 20-30
years after primary tumor removal are not unusual for this cancer. Recurrences
after 5 years are common. These facts often go unrecognized in the literature,
and the persistence of this cancer is often underestimated.
These tests/exams also NEED to be done for FIRST TIME patients, around
the time of primary tumor diagnosis, or soon thereafter, to insure that
there are not already other tumor sites. It is not unheard of, especially
for the high grade strain, for there to be multiple tumor sites diagnosed
at same time as primary.
While we are recommending a vigilant program of follow-ups and diagnostics,
we also want to take note of a couple of concerns or challenges which
may affect the specific timing and choice of tests:
1) There are treatment methods for dealing with ACC tumors. But the conventional
methods are essentially focused on local control of that specific tumor
site. At this time (6/05) there are no curative systemic (whole body)
treatment options. Some physicians would argue that doing frequent radiology
testing (and therefore potentially diagnosing tumors early) will have
little impact on long term survival in most patients. We at ACCIC however
feel that early diagnosis of any tumor sites at least gives one the opportunity
to treat them when they are smaller and less advanced. AND, we feel that
the quicker you control tumor sites locally, the more you decrease the
likelihood of future recurrences or metastases. Larger more advanced tumors
are both harder to eliminate, and have more likelihood of recurrences
and metastases. So we stand behind our suggestions for routine diagnostic
testing (“surveillance”).
2) At this point in time there are numerous Radiologic (and other diagnostic)
exams which can be ordered with the intent of finding cancer sites, or
noting changes in previously known ones. These tests use different technologies,
some of which are better at finding things in different areas. Some of
them are also less likely to find smaller or low grade tumors, which is
often how ACC starts out. Often one test will see certain things, and
another test will see other ones. And sometimes there are false negatives
and false positives. This can lead to the suggestion that a cancer patient
should get LOTS of different tests, to cover all the bases. But many physicians
will be reluctant to order too many tests, which have similar purposes.
The financial and insurance aspect may be a part of this as well. And
the patients as well may be reluctant to request too many tests.
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We at ACCIC feel that there are some tests and exams that should be done
for (essentially) all ACC patients on a regular basis. But there are others
where the individual aspects of the case (and the patient) can affect
the choices of which tests to run and when to run them. There are also
aspects of technological advances, and test availability in your geographic
location that play into these choices. We have tried to give you enough
information below to help you make informed decisions in this area.
1) Physical exams of head and neck area by oncologist
or ENT/Otolaryngologist (assuming primary site was in parotid gland, or
other head and neck site.) To check for possible recurrences. Usually
also includes visual exam of throat.
2) Physical exams (if possible) of any areas where there were
previous cancer sites. To check for possible recurrences.
3) Blood Tests: These are usually done at every follow-up
(depending on your frequency of followups). They should include things
such as White and Red Blood Cell Counts, Platelets, and a "Metabolic
Series", including things like Bilirubin, Calcium, Glucose, Cholesterol,
Creatinine (among others). These are not cancer specific tests. But they
are run to make sure that your basic organ systems are operating. Problems
found may or may not be cancer-related. There are a number of “cancer
series” blood tests your physician can order as well. Different
hospitals or doctors may have a different series they want to run. These
tests may be used to detect a couple of general categories of abnormalities
. The first category is “tumor markers”. These are substances
which can indicate presence or activity of certain cancers. While there
are some markers which are highly indicative for certain cancers, there
are no specific tumor markers for Acinic Cell Carcinoma. There are some
markers which could potentially indicate presence of the pancreatic or
breast cancer versions of the cancer (or perhaps ACC in other organs).
And they could indicate if a cancer is growing or regressing (such as
AFP levels for pancreatic cancer.) But they are not ACC specific markers.
The second way that a blood test can indicate cancer (or increased cancer
growth) is by finding abnormalities in the body CAUSED by cancer or tumor
presence, or growth, and its’ affects on bodily functions. The blood
and metabolic series I described first could find an indicator of those
kinds of problems. They can also help indicate cancer REGRESSION. Another
VERY important role for blood tests is to indicate problems caused by
treatments or medications. It is important to monitor patients for possible
side effects caused by the treatments themselves. The blood tests can
also show improvements/changes in those side effects. These types of measurements
are critical during treatment periods.
4) Urine Tests: These are not generally part of an ACC
patient’s standard follow-up. But they may be ordered by your physician(s)
to check your general health, or to look for similar kinds of “markers”
as found in blood tests. Sometimes a urine test may be ordered to see
if you express certain abnormalities that might make you eligible (or
not) for certain cancer treatments.
5) MRIs and/or CT Scans of Prior/Current
Tumor Sites:
(Magnetic Resonant Imaging and Computed Tomography Scans)
If you have had a tumor in a specific area, you will usually get follow-up
radiology studies of the area in question. This will usually be done both
prior to and following surgery, radiation, chemotherapy or other treatments.
These studies are then run at different intervals, to determine if a particular
tumor has grown, decreased in size, recurred, etc. The timing on these
scans varies, depending on the case specifics. If a tumor has been treated,
seemingly successfully, you will probably run an MRI or CT Scan of the
area initially every 6-12 months. If there is active disease, three month
intervals (or less) are more likely. After some period of cancer control,
the frequency of these site-specific follow-ups will likely decrease.
MRIs and CTs each have their advantages and disadvantages. MRIs generally
image soft tissues better than CT scans. But CT can see details of bones
better. MRIs may show more details in general, but not in all cases. The
MRIs (usually) take longer to run, and therefore patient motion can distort
results. So for example, MRIs are not as good for lung tumors, due to
patient breathing and heart movement. (Newer MRI machines are faster,
and so this may become less of a consideration in the future.) MRIs also
show interference from metal objects (such as orthopedic hardware). There
are other variables such as tumor type and tumor location (or surrounding
tissue), which determine which type of test is specified.
There are also some safety issues in making the choice between MRI and
CT. MRI is generally considered a safer modality, having to do with both
the imaging system itself and the intravenous contrast agents sometimes
used. We explore this in more detail in the “Whole Body Screening”
section below. In the case of individual occasional studies done to evaluate
tumor change or possible recurrences… we do not feel that the safety
factor outweighs any considerations for diagnoses. One should choose the
study (or studies) that will give you the most reliable diagnostic answers.
These two imaging tests (MRIs and CTs) may each be ordered in different
situations. Sometimes both types of study are ordered.
6) Studies of the Chest/Lungs:
Lungs are one of the two most likely locations for metastases for this
cancer. This is much more likely for the high grade/aggressive variety.
But if someone has low grade ACC with higher risks for recurrences, or
with previous metastases, the lungs are at significant risk for involvement
as well. We at ACCIC DEFINITELY recommend periodic radiologic chest studies
for all ACC patients. But with regard to exactly which imaging methods
and when, there are some details to be aware of and consider.
6A) Chest X-Rays: We had been recommending every
patient who has had Acinic Cell Carcinoma get a chest X-Ray at least once
a year. This was also based on widespread recommendations among physicians
for a long time. However, we now have considerable evidence that
Chest X-Rays often/usually do not show early stage or smaller tumors,
low grade or low metabolic activity tumors (such as low grade ACC) as
well as tumors hidden behind the heart. They likely will show
up more advanced/larger tumors, or high grade versions of ACC, but that
is not 100% certain either. If it is determined that the lung tumor(s)
you have are visible on chest X-Rays, and they can be used as a reliable
method of evaluating growth change, then they may be utilized. They also
may be utilized in some cases to monitor NON-CANCER lung disease or pulmonary
problems, perhaps related to the cancer. Otherwise, for routine
“surveillance” for ACC patients, they are probably a waste
of time and money in most cases. Certainly they are not
a good choice for screenings or surveillance for early stage disease.
Instead...
6B) CT Scans of the Chest (with contrast) are clearly
a more sensitive test to diagnose lung nodules/metastases, especially
small or early stage tumors and low grade or low metabolic activity tumors
(like low grade ACC). There have also been advances in CT technology,
so that some machines/methods are even better than others. This includes
both spiral (or helical) scans and multislice CT or multidetector CT (MDCT).
These machines have better chances of diagnosing small tumors. At
this time we are recommending periodic CT SCANS OF THE CHEST for all
ACC patients, and most especially patients with higher risks for metastases.
In most cases, this would be once annually.
There are some other imaging options of WHOLE BODY/FULL BODY tests that
may diagnose these kinds of tumors. Chest/Lung CT scans could possibly
be part of a Whole Body series, instead of being run separately. (See
Whole Body section below.) But, one needs to be sure that IF a whole body
study is ordered, that it will give JUST AS DETAILED and SENSITIVE views
of the lungs (and small low grade tumors) as the Chest CT.
There
are also some other factors to consider in terms of the frequency of these
tests…
As we mentioned above, there are some potential risks with CT scans, likely
more so with frequent ones. CT Scans give off approximately 100 times
more radiation than conventional X-Rays. That is still generally considered
to not be very much radiation, but it is possible that frequent CT scans
could actually induce disease. At this point data to support this is limited,
but it is being studied and taken into consideration. The most significant
data on this subject up until now has to do with Atomic Bomb survivors
in Japan. And it is noted that cumulative exposure (after numerous radiologic
procedures) is more likely to have higher risks. The risks of secondary
cancer inducement are likely extremely low for the average cancer patient,
but increase with repeated exposure to various tests. In most
cases for ACC patients the potential benefits should outweigh the potential
risks. But we do feel a responsibility to inform our readers
that there may be some risks posed by frequent Chest CT scans (or Whole
Body CT scans discussed below). For that matter, there are potential risks
even with frequent plain film X-Rays and various nuclear medicine studies.
These risks should be taken into consideration when deciding how frequently
to run radiology tests. Frequency and quantity of tests should take case
specifics and individual patient history into consideration. We encourage
readers to do more research on these subjects, especially as more data
becomes available.
As stated above, in cases with any significant chance of metastases, we
would recommend annual Chest CT studies. But in other cases with good
local primary tumor control, and no recurrences (for 5-10 years, depending
on the case), once every two years is probably adequate. We do not want
to make an absolute statement on this. SO…we recommend that the
frequency of these screenings be left up to the discretion and concerns
of the patient and their physicians. This should be based on a number
of factors, including the individual’s cancer history, risk for
lung metastases, age, general health, prior radiation exposure to chest,
etc. If you already have had aggressive or metastatic ACC disease,
we strongly suggest annual Chest CTs (or perhaps whole body CTs or PET/CT
combos that include the chest). If there is active or previous
lung disease, these studies should probably be done even more frequently,
dependent on your growth patterns and treatment monitoring needs. For
people with active lung tumors, or aggressive high grade metastatic disease
in any location, most physicians would order studies every two to three
months. In some cases, where your tumor(s) are visible by standard Chest
X-Ray, intervals between 12 months could perhaps be done with those.
-
Additional CT Scan Notes:
- Older
model CT scanners take cuts/slices (pictures) individually. In those
cases, you need to make sure that the scans are done with FINE CUTS,
in order not to miss very small tumors (or small changes in tumor size
or number).
- The
newer generation CT scanners take images in a spiral fashion (continuous
images), so specifying fine cuts is generally not necessary.
- The newest technological development in
CT scanners is multislice CT or multidetector CT (MDCT). This has several
more advantages, including: a) data acquisition is so rapid that the
scanning of the entire lung can be performed during a single breath-hold;
b) continuous acquisition of thin slices allows improvement of image
quality; c) MDCT may help reduce the radiation dose to patients.
- We
recommend that whenever you go to a radiology test, you bring a document
for the radiology technician and reading radiologist. Among other things
(noted below more specifically), this document should clearly state
that “Acinic Cell Carcinoma is often a VERY slow growing cancer.
Fine cuts are required to diagnose early stage tumors and changes in
previous ones. ANY SMALL CHANGES OR SMALL POSSIBLE TUMORS ARE RELEVANT.”
This note is applicable for ALL imaging tests.
-
If you choose to do annual or periodic WHOLE BODY CT SCANS or COMBINATION
PET/CT Scans (discussed below), that would likely rule out the need
for separate Chest CT Scans (or Chest X-Rays for that matter). But you
need to determine if the lungs are viewed in as much detail as possible.
If not, then you may want to do the additional separate Chest CT.
-
Whole Body tests in most cases will not give as detailed/reliable views
of specific areas. But the technology is improving, and certain machines
may. The important thing is to make sure that lungs are viewed in as
much detail as possible. And to choose the test(s) that will give you
that result.
-
It MAY be that in the near future Whole Body MRIs (see below) could
also replace the need for separate spiral Chest CT scans. We do not
have data to support this yet.
6C)
MRIs of the Chest (or Whole Body MRIs):
Up until now, MRIs have NOT been considered the best tool for diagnosing
lung tumors, due to the slow speed of the MRI machine. Patient movement
from breathing, as well as heart beating, results in “motion artifact”
(a blurry image). There have been recent advances in MRI technology, which
have also greatly increased the speed of image acquisition. The newer
systems have been reported to image the entire body with good quality
and sensitivity to detect disease within a 15-minute period. According
to 2004 published data that includes “acceptable image quality of
the lungs”. We are not sure if it is good enough to detect tumors
less than 1 cm, which the CT scans CAN. And even the fastest machines
still get artifacts from patient movement. Part of this is also dependent
on how still the individual patient can be. There is not enough support
yet to recommend MRIs for lung screenings, and certainly Whole Body MRIs
are not widely used or accepted for this application. It also seems that
to achieve any level of detail would require the newest “3 Tesla
Magnet” machines, which are not commonly available as of 2005. But
the applications of MRI are expanding, and it may be that in the not too
distant future, new machines will have greater roles. These are questions
to keep in mind, and ask YOUR doctors and YOUR radiologists, about the
machines (and tests) available at your facilities. As time progresses,
there will likely be even more advances (either with MRI or other technologies)
to allow for more detailed testing, greater speed, and less patient risk.
And the faster machines will be more widely available. When we are assured
that an MRI of the chest can achieve the same results as CT, this may
be a better (and safer) imaging test. But we certainly cannot say that
is true YET (7/05).
6D) Low Dose Radiation Scans (Chest Radiography):
This is another test for imaging lungs and potential lung tumors. This
may be the most detailed study currently available. However it is not
widely used or available at this time. The radiation doses to patient
are not much higher than for CTscans. And results are being studied. IF
this test is available where you are (and covered by your medical insurance),
then this is worth looking into and comparing it with CTscans, with regard
to both diagnostic capabilities and radiation exposure question. You should
discuss this option with your physician(s).
6E) Summary on Chest Studies: The key here is
that ACC does metastasize to lungs; very often with high grade/aggressive
version of cancer, and also in cases where the low grade/less aggressive
type has higher risk factors (such as large primary tumor, lack of complete
removal of primary, repeat recurrences or other metastases). If you have
a low grade ACC case which has had multiple recurrences or metastases,
or has been active in your body for 20 years or more, it is quite likely
that it will eventually migrate to the lungs. Chest X-Rays are clearly
not the best way to find early stage or small tumors. They should show
larger tumors in most cases, and perhaps higher grade ACC nodules, but
this is not certain. For monitoring changes in known larger tumors, X-Rays
MAY be adequate (if they show your tumors). CT Scans of Chest
in some form seem to be the most available tool for diagnosing lung tumors,
at this point. (This could perhaps be part of a Whole Body Series,
as described below.) But one has to make sure that if a Whole Body Scan
is done, that it will provide at least as much detail (and image very
small tumors) as individual “fine cut” or “spiral”
CTscans. Frequent CT scans do come with some higher risk of radiation
exposure than conventional plain film X-Rays. This is why it is advised
by some physicians to use Chest X-Rays in intermediated studies (if needed)
between (annual) Chest CTs. But it is generally accepted that risks from
CT inducing cancer are far lower than the risks for potential recurrences/
metastases of a pre-existing one. The other option for chest studies
MAY BE Low Dose Radiation Scans. This will likely give even greater
detail, and likelihood of diagnosis of small tumors. But this is not as
widely available as CTscans and is still being evaluated. MRI technology
is improving and may be available in some locations where it is used in
this application. But we do not have enough data supporting this application,
and likely it MRIs will not provide the accurate detail of CTscans or
Low Dose Radiation Scans. We hope that new developments in imaging/radiology
will lead to tests that can diagnose early stage tumors of this type with
more accuracy, more speed and less risks. In the meantime, get the studies
you (and your advising doctors) agree are most warranted, based on your
individual history and concerns.
7) WHOLE BODY/FULL BODY SURVEILLANCE / SCREENING TEST OPTIONS:
We at ACCIC generally recommend full body “screening” or “surveillance”
for ALL ACC patients. (The actual correct term is “surveillance”,
which refers to tests performed on people who have a propensity for (or
are at higher risk for) a certain disease. “Screening” refers
to detecting unsuspected disease in healthy people”. However, the
latter term has grown to be used commonly for both descriptions.) The
question of frequency of running these types of tests is up for discussion.
In general, we would recommend ANNUAL surveillance tests for all ACC patients.
But they have to be undertaken with the awareness that they may not always
find everything, or be completely reliable. In general whole body screenings/surveillance
are not as detailed as studies focused on specific areas. On the other
hand, technologies keep improving, and whole body tests are becoming more
sensitive (and quicker). We also understand that there are sometimes financial
and logistics considerations. And, with some tests, there are questions
raised about patient safety with frequent exposure. (These are likely
very low risks, but still something to consider, especially when considering
long periods of repeated tests.) There are also factors to consider related
to how much treatment plan would change even if new cancer locations are
discovered.
Due to all these factors, we cautiously recommend annual surveillance
for all, but feel that once every two years (or maybe even longer)
is probably adequate for very low risk cases. Those would include cases
of SMALL (under 2 cm) salivary gland primary tumors that were completely
removed without cell spillage, had clean margins, no lymph or blood vessel
involvement, were only present for short period before excision, etc.
Also, if those patients received post-operative Fast Neutron or Heavy
Ion radiation, those same cases would likely fall into the “lower
risk” category (but not completely without). Cases who had the prior
risk factors but did NOT get Fast Neutrons or Heavy Ions MAY be at lower
risk, but certainly at greater risk than those who had Radiation. Higher
risk cases of low/medium grade ACC (larger tumors, local recurrences,
incomplete tumor removal, lymph involvement, no post-op radiation or only
conventional radiation) SHOULD definitely get the annual whole body surveillance.
And cases of High Grade (poorly differentiated cells on pathology or obviously
aggressive/fast growing clinical course) ACC should UNQUESTIONABLY get
Whole Body surveillance at least once a year. (They should also get other
more specific tests to cover all bases.) In some cases, surveillance may
be ordered more frequently than that, depending on the aggressive of the
cancer. NOTE: These are general guidelines, and express OUR OPINIONS,
with a number of generalities. Each case should be considered on an individual
basis.
The next question is WHICH Whole Body/Full Body surveillance tests to
order. And at this time that is not as clearcut as it might seem…
7A) Full Body Bone Scans: Bones are the second most common
site for ACC metastases. This is a test that we had been recommending
for EVERY acinic cell carcinoma patient on a routine basis. We were recommending
once a year. If the patient has had aggressive or widespread bone disease,
a large tumor, or previous metastases of any type, this test is even more
important (and may even be run more often). With the increasing availability
of Whole Body PETscan/CTscan combo test, the Bone Scan IN MOST CASES is
probably redundant. There may be a rare occasion where a Bone Scan will
pick up something overlooked by PET/CT combo. This might include a relatively
superficial area of bone change where there was active bone remodeling,
where the isotope used in bone scan enhances this better. At this point
we would say that if you are getting annual Whole Body PET/CT combo as
a surveillance test, you probably do not need to get a Bone Scan additionally.
The exception we would make is if the patient has already had
bone metastases. In those cases, the extra test should be considered,
just to make sure you are screening everything thoroughly. For other patients,
IF cost is not a consideration, and you really want to be thorough and
vigilant, getting the Bone Scan is essentially without risk. IF
you are NOT getting annual PET/CT combos, then we definitely recommend
annual Bone Scans.
Another Whole Body testing option starting to become available is Whole
Body MRI. In the past, MRIs generally did not image bones as well as soft
tissues, and therefore were not the best test to visualize bone details.
BUT this technology is improving, and it may be that newer (more powerful)
MR machines will do a fine job in this area. But this technology is not
proven (or widely available) yet. You can discuss this with your local
radiologist (or wait to hear more from us). IF whole body MRIs are available
for you, the question needs to be answered as to whether they will provide
as much detail (for small or low grade tumors) as Bone Scans. If the answer
is not definitively yes, then we would still recommend ALSO getting the
Bone Scans.
Bone Scan Notes: For cancer screenings, this is a whole
body test to look primarily for new sites, which if found, would need
to be followed up by more specific studies. The test is a “nuclear
medicine” test, and involves injection of a small amount of radionuclide.
A full body scan will “light up” (show enhancement of) any
problematic sites in bones, not necessarily just cancer sites. If a specific
area attracts the radionuclide/shows enhancement, subsequent more detailed
studies (MRIs or CT scans) should be done of the area in question. There
is no preparation required for Bone Scans. You will however need to arrive
for the test 2-3 hours in advance. You will receive an injection, and
then need to wait while it makes its’ way through your system. You
will be encouraged to drink lots of fluids and empty your bladder frequently.
There is virtually no risk from this test. The radioactive isotope is
eliminated from your body within 24 hours, and is not considered dangerous
(although it does contain about 200 times the amount of a standard X-Ray).
That sounds like a lot, but it is not enough to be dangerous to adults.
Some doctors will advise patients not to have close contact with pregnant
women, babies and young children until the day after the scan. You may
not be able to breast feed during that period either, primarily because
you would be holding the baby close. If there is a possibility you may
be pregnant, you may not be able to undergo a bone scan. This is because
the radionuclide could cross the placenta and affect the baby.
7B) Whole Body PET Scans:
This is another full body test, and also falls under the “nuclear
medicine” category. It also utilizes a radioactive isotope, with
another “tracer” substance attached to it. In testing for
cancer, that is FDG or fluorodeoxyglucose, a form of glucose, which is
attracted to tumors. PET scans can be used to detect various biologic
activities. For cancer patients, they are used to detect active tumor
growth anywhere in the body. A PET scan can potentially show tumor growth
before it causes symptoms, which (due to slow growth characteristics in
most cases) could make it very valuable for ACC patients. It can also
distinguish between live and old (dead) tumor material, as well as distinguish
between “more active” and “less active” disease.
However, slow growing tumors with lower metabolism are not noticed as
well by PET, and specifically slow growing pulmonary (lung) nodules may
go unnoticed. (See more in “Notes” section below.) In general,
we had been recommending annual PETscans for all ACC patients. However,
based on the fact that many early stage and low grade tumors are not seen,
we are raising the question of the usefulness of this test for all ACC
patients. At this point we DO feel that PETscans can be a useful tool,
when combined with other diagnostics. But not used as the only method.
And now there is a new technology becoming more prevalent
which COMBINES PETscans and CTscans. (See below.) That test is likely
more useful for ACC patients specifically, if you can get it. We
DO feel that PETscans (or PET/CT combos) are even more recommended for
any patient who has had aggressive or widespread disease, a large tumor
or tumors, or previous metastases. If you cannot get a Whole Body PET/CT
combo, then PETscans should be run with the addition of Full Body Bone
Scans, and either Chest CT scan or Whole Body CT scan (with detailed chest
views). There is also now the additional potential option of Whole Body
MRI to consider. If that becomes more widely available (and reliable),
a PETscan in addition may still be advisable. But we do not yet have enough
data to make any definitive recommendations on this.
Note: Some physicians may be reluctant to run both full
body Bone Scans and Pet Scans. At this point, in our experience (if you
are not running a Whole Body PET/CT combo), they are both warranted, as
some radiologic studies reveal some things and not others. We definitely
know of cases where PET has not seen tumors that appeared on Bone Scans
or CTscans. And the reverse is also sometimes the case. However, if you
get PET/CT combo, Bone Scans are seemingly not required in most cases.
Notes about PET scans:
- PETs
are not 100% reliable, but can be a valuable tool as part of a series
of screening procedures.
- It
is important that PETscans be handled by experienced technical and medical
personnel. While this technology has been available since about 1999
in many places, it is still more likely to be found (and executed properly)
in major cancer centers or academic/teaching hospitals.
- Due
to the sensitivity of the test, the pre-test procedures for patients
are very critical, and if not handled properly, increase the odds for
inaccurate results.
-
Patient must obey strict dietary restrictions prior to exam.
-
Patients must be relaxed and immobile for at least an hour after injection,
prior to exam.
- Patient
must urinate prior to exam, and try to empty as much urine as possible.
- Even
when handled properly, there may be false positive or false negative
results with PETscans.
-
Small tumors may get undiagnosed.
- Low
grade or slow growing tumors may also remain undiagnosed until of significant
size or activity.
- Despite
these possibilities, we still feel this test can be an extremely useful
tool for cancer patients and physicians (in conjunction with other methods).
One can potentially catch any new tumor growth anywhere in body early,
before it starts causing symptoms, And the PETscan can point the radiologist
to suspicious areas that might otherwise go unnoticed. It also
can be valuable in evaluating whether a previously known tumor is showing
more or less activity after treatment.
- IF
you do get PETscans: Any areas of suspicious “increased uptake”
should be treated as possible cancer locations, and more definitive
radiologic studies (or other diagnostic tests) should be done of those
areas. If you get a PET/CT combo, then the CT is evaluating
those regions at the same time. You may still require some other studies,
but the CT will give more data immediately.
- The
radiation dose from PETscans is equivalent to about two X-rays. The
isotope is quickly eliminated from your body, and is reportedly not
dangerous. To be safe, it is recommended not to get too close to infants
or pregnant women for a few hours after scan. It may be that pregnant
women should not get PETscans. But ask your physician or radiology department.
7C) Whole Body CT Scans:
This is recently becoming more available, and could in some cases be
a better choice than PETscans for whole body diagnostics. (They both
have their benefits.) Whole Body CT can give detailed views of the entire
body. And the newer machines can provide even greater detail,
with shorter scan times (and therefore lower radiation exposure).
PROS: It can detect small tumors throughout entire body (although it
MAY not find them all). CONS: It does not specifically target tumor
metabolism. It gives a fairly high dose of radiation to entire body,
and there are potential risks associated with that (although they are
likely very low). But this factor can affect the frequency you want
to run this test. In any case, there is now a new radiologic option
that may be a better choice than Whole Body CT alone…
7D) Combination PET/CT Scans: A relatively new application of previous
technologies, and becoming more widely available. This may be
the most advantageous whole body screening for ACC patients at this
time. It gives the benefits of searching for tumor metabolism
combined with the more precise scanning of the CT. AND, if there is
a questionable spot found with one technology, it can immediately be
compared easily with the other one. (Separate PETscans and CTscans are
harder to align and compare.) There is data to indicate that the combination
technology can identify tumors much smaller than those identified by
CT alone. It has been known to detect tumors as small as 2mm in size.
Early data also shows that a PET/CT further improves the possibility
of discriminating between a benign process and cancerous tumor. However,
with the full body CTscan you are still facing the higher radiation
dosages. We have given some guidelines about recommended frequency earlier.
Based on those, the choice of how often to run these diagnostics should
be made on a case by case basis. This test would replace separate
Full Body PET Scans or CT Scans, and in general replaces the need for
a separate Bone Scan (see details under Bone Scan). And it would replace
a separate CT of the chest (as long as you make sure they are getting
good detailed views of lungs). This is probably the best whole
body screening test available at this time. However: It is still not
widely available. And, because it is a new test in most places, it may
not be covered by your medical insurance. There also is another Whole
Body surveillance test which may be available soon, and worth considering…
7E) Whole Body MRIs: This is recently getting to be
more seriously considered as a Whole Body Surveillance Test for cancer
patients. Higher power machines (with stronger magnets) are slowly becoming
more prevalent. And a strong case has been made by some in favor of
using them for Whole Body screenings. In the past, MRI has been found
to be good at detecting disease in certain organs, but not quite as
good in others. In recent studies with newer machines, the reliability
and accuracy of MRI at detecting diseases in liver, brain, spine, pancreas,
and kidneys, were extremely high and imaging of the lungs was reasonable.
But optimal imaging of the heart, breast, and colon still requires further
development (also to see small-volume disease). Nonetheless, imaging
of all the latter mentioned organs was described as being at a diagnostically
“acceptable” level. As of 6/04, the manufactured MRI systems
had evolved to the point of being able to view the entire body with
good image quality and sensitivity to detect disease within a 15-minute
period. Whole body, high-quality MRI screening is now more feasible
than it ever has been in the past. We do not know how available (or
how easily ordered) this test is as of June, 2005, or whether it is
a better tool than Whole Body PET/CT for early stage tumor diagnosis,
especially of low grade cancers like most ACC cases. But it is something
to keep in mind. More information below…
7F) Comparing Whole Body MRIs and CT Scans (as well as Whole
Body PET/CT combos):
Some data indicates that MRI will find small early stage tumors in many
cases betterthan CT scans. That is VERY important in the case of ACC,
which often can grow slowly, silently and without causing symptoms for
many years. Because both whole body CT and MRI screening are relatively
new concepts, limited data has been collected comparing the 2 methods.
However, there is some concern in the medical community that whole body
CT screening leads to a large number of questionable findings. And we
know for sure that PETscans routinely have questionable findings. Of
the recent data that HAS been collected, overall, MRI has been found
to discover more lesions and correctly characterize disease, whether
benign or malignant, than CT. MRI has been shown to be superior to CT
for examining specific regions of the body such as the head, abdomen,
and pelvis. In the past, the biggest exception to this rule has been
imaging of the lungs, performed better by CT than MRI, largely due to
the time required for scans (although MRI technology is advancing to
address this problem). CT has generally been considered to image bones
in more detail than MRI, which is better at most soft tissues. And CT
remains the optimal imaging technique for visualizing small arteries,
such as the vessels that supply blood to the heart, but there will likely
be improvement for MRIs in all these areas in the (possibly near) future.
A case can also definitely be made for the safety advantages of MRI
over CT scans, having to do with both the imaging system itself and
the intravenous contrast agents sometimes used. MRI does not give patients
any radiation exposure. This may be more of a consideration for patients
doing periodic/regular whole body screenings. MRI utilizes a powerful
magnetic field and radiofrequency energy which have not been shown to
cause cancer or fetal abnormalities, unlike the ionizing radiation (x-rays)
used in CT, that is a known cause of cancer and fetal anomalies. (The
most likely possible radiation-induced disease would be bone marrow
problems with subsequent leukemia.) It is important to note that although
x-rays are known to cause cancer, the exact risk of cancer from receiving
CT scans, and even repeat CT exams, is unknown.) While radiology study
radiation doses are all low level, with repeated exposure to numerous
radiology tests over many years, the risks definitely increase. The
intravenous contrast agents used routinely in MRI are also considerably
safer than those routinely used in CT, with regards to possible kidney
injury and allergic reactions. There are also more risks associated
with the actual physical injection of contrast with CT than with MRI.
(Having said all this, the risks (for CT) are likely all low, and many
many patients receive these exams every day all over the world.) In
almost all cases, the gains cancer patients can get with ANY of these
tests far outweighs any risks. And for most ACC patients, the risks
for causing a subsequent cancer are likely much less than the risks
of an ACC recurrence or metastasis. We would however recommend MRIs
over CTs for pregnant women, and those with poor kidney function or
a history of allergies (in cases where either test can work).
There is limited published material on this new application of MRI technology.
It seems that in order to perform high quality whole body MRIs, high
resolution machines using parallel imaging are required. And most likely
“3 Tesla magnet” machines. These are certainly not widely
available. AT THIS TIME, Whole Body MRI is a developing technology,
and most medical professionals would/could not recommend it over Whole
Body CT for their patients. If/when the choice between
Whole Body MRI and Whole Body CT really is a viable and comparable one
(in terms of the diagnostics), then making the choice for the safer
method would unquestionably be a reasonable one. For Acinic Cell Carcinoma
patients, especially those concerned about the radiation risks posed
by Whole Body CTscans, the Whole Body MRI screening may be a viable
alternative in the future. And, with the information we have, it looks
that it may be a better diagnostic test than the individual Whole Body
CT especially for certain areas. But not for lungs at this point (as
well as some of the other areas outlined above).
In the limited studies published comparing Whole Body MRI and
Whole Body PET/CT, the MRI results look promising as well.
Sensitivity in the area of lymph node metastases may be limited. The
addition of the PET scan to the CT, which can detect tumor metabolism/activity
may be a factor which is important to consider. But we need more data
on this question. Perhaps, in the future a Whole Body MRI will
be able to be done in conjunction with the Whole Body PETscan, and we
will be able to benefit from the best of both technologies.
On the other hand, it may be that the latest generation of MRI machines
will be able to diagnose early stage small tumor growth as well as PETscans
(or better). For now (and until we present more definitive information
here), we recommend raising these issues in discussion with your physician(s).
8) Needle Biopsies / Fine Needle Aspirates:
If Radiology tests find a suspicious or suspected tumor mass, there
are decisions to be made. Sometimes the radiology itself is a good indicator
of whether the nodule/mass is tumor or not, and (especially in the case
of PETscans), if it is a malignancy. But more often the imaging only
denotes a mass, and what that mass is, is not determined. If the patient
has had prior recurrences or metastases, assumptions are often made
that the mass is likely the same histology (same type of cancer). And
a treatment plan is devised based on that ASSUMPTION. But it is still
an assumption, and you do not know for sure. To determine with more
certainty what a mass actually is, there are two options: One is to
perform a surgical procedure, removing the tumor (or as much as possible)
and then perform pathology tests on the tissue removed. The other option
is to perform a Needle Biopsy (also called a Fine Needle Aspirate or
FNA). This is performed by inserting a needle into the mass and extracting
very small pieces of tissue, which are then sent to the pathology lab
for diagnosis. Some tumors (near the surface usually) are relatively
easy to biopsy. For that matter, very small tumors/masses near the surface
can often be easily excised completely. Other tumors, deeper in the
body may be more challenging. Often CTscans are used to image the tumor
and guide the placement of the needle (“CT guided needle biopsies”).
But some tumors are located in areas where performing a needle biopsy
is too challenging or there is too much risk of injury to the patient.
We highly recommend needle biopsies be performed on undiagnosed
PRIMARY tumors whenever possible. This specifically applies
to larger or more challenging masses that cannot be easily COMPLETELY
excised with clean margins. That is so that the patient and physician
know what they are dealing with prior to primary surgery. Many ACC cases
are only diagnosed after surgery, and that sometimes proves to have
been a mistake. Knowing the histology of a malignant cancer prior to
surgical procedure, can affect the details/goals of the surgery, or
for that matter IF surgery is the best treatment option at all. For
primary parotid gland tumors, for example, this may affect the choice
of superficial or complete parotidectomy, neck dissection, etc. Some
tumors in fact may be more safely and effectively treated with Fast
Neutrons ONLY (without surgery). Or, surgery could be planned knowing
that Neutrons will follow later (and therefore be able to avoid potential
damage to things like facial nerve, when it is involved). These kinds
of choices are very important, and can greatly affect the patient’s
clinical course later.
Unfortunately, for most people reading this (NOW), you will already
have had your primary tumor diagnosis. But you may be faced with the
choice of whether or not to biopsy a recurrence or metastases. In
general, at ACCIC we would advocate performing needle biopsies whenever
possible, with some exceptions.
Those would include:
a) Risk of injury to patient.
b) Undue risk of spreading disease.
c) In cases where it is extremely likely that the diagnosis is another
recurrence or metastases (after the patient has had several).
The reason we recommend these procedures is twofold:
1) To be sure that you are treating the right thing with the right method(s).
2) To be able to utilize tissue from current sites for immunohistochemistry
tests, possible chemosensitivity testing, etc.
A few notes about Needle Biopsies:
- There
is some risk of cell spillage, or spreading of microscopic disease during
the needle biopsy. Most oncologists will tell you that this risk is
low. But there is some risk nonetheless.
- Sometimes
one does not get a good sample of cells from a needle biopsy. So you
could end up with a false negative result in the pathology report (or
an inconclusive result.)
- Even
with a good biopsy sample, there may be errors in pathologic identification
of the tissue. (This is a problem with ACC in general.) Sometimes larger
samples are needed than one gets in an FNA.
-
Most needle biopsies (especially of salivary gland sites or tumors close
to the surface) are performed under local anesthesia, with the patient
awake. Even biopsies performed at greater depths are usually done with
local anesthesia. Sometimes, despite the anesthesia, these can be uncomfortable,
or even quite painful. That is not the intention, but it can happen.
-
Despite these possibilities, the potential advantages of finding out
the histology before surgery (especially of primary tumor) are still
recognized, and usually justified
9)
Other Tests: Due to the ever-expanding fields of medical
technology and radiology/medical imaging specifically, new diagnostic
methods are regularly being improved and developed. It may be that your
physician will recommend a test that we have not mentioned, for your
individual case. Or you may utilize one or more of the methods described
here, with some results or experiences you feel we should know about.
Please feel free to email us about your experiences (especially if you
think they would be useful for others) or with information about any
new technologies being used on ACC patients.
10) Self Exams and Notation of Symptoms: In addition
to the Physical Exams by physicians and Radiology Tests described above,
one of the most valuable tools for early diagnoses of recurrences or
metastases is the patient themselves. Be aware of any new “bumps
or lumps” (in your head and neck area especially for patients
with previous salivary gland tumors). Be aware of new pains or symptoms
ANYWHERE in your body. If these are significant, periodic, chronic or
worsening (and not just a one time thing), they should be reported to
your physician immediately, and diagnostic tests should likely be ordered.
If a questionable nodule is discovered, in many cases, a needle biopsy
should be ordered to assess if it is ACC or something else. One of the
classic mistakes with this cancer is leaving tumors hanging around your
body, when they could have been diagnosed and removed (or otherwise
treated) in early stages.
For some of the radiology tests we
have recommended, there will be a set of pre-test instructions that
your Radiology Department should get you in advance. Sometimes they
will be mailed to you, and sometimes they will call you. We recommend
ASKING when the test is scheduled, if there ARE any pre-test instructions
(just in case they forget to tell you). Some tests will require you
to not eat or drink (except clear liquids or water usually) for some
period of time prior to exam. Some exams will require you to arrive
an hour or two (or more) early to receive an injection of some sort.
Some tests will require you to drink “contrast medium” at
home in advance and/or at the hospital prior to exam. Sometimes allergies
you have will affect the contrast medium they can give you, so you need
to inform technicians about this in advance (shellfish allergies are
one of the indicators). (They should ask you about this on their own
of course.) Some tests (such as PETscans) will require you to be VERY
still and quiet for at least an hour prior to exam, with almost no movement
before and during test. In many places they will want to give you a
mild sedative for this reason. If you receive the sedative, you will
need to have someone to bring you to and from the hospital. There will
be many other details about the tests that your hospital should inform
you about. You can read more details about diagnostic tests on the Diagnostics
and Followups page of this website.
In addition to bringing yourself (and
someone to drive you if that is necessary), and adhering to any pre-test
instructions you were given… We recommend bringing these items:
1) Any Radiology Films (or DVD digital copies) of previous Radiology
Studies that are not on file at the place where your test is
being done. The Radiologists use these tests to compare changes between
studies. So if they are trying to assess change in a known tumor (or
to see if current suspicious areas were there earlier), they need the
previous films. If the tests were performed at the same hospital, they
will have access to them. But if you had them done somewhere else, they
may not. Specifically required are the most recent previous versions
of the SAME test that you are running today. So for example; if you
are getting a Chest CTscan today, you need to bring your most recent
Chest CT, if it was not done at that institution. If you did not have
a Chest CT previously, but you had a Chest X-Ray or PETscan, bring those
as well (or any other studies that showed the Chest/lungs). We
DO recommend that if you can get these tests sent to the new testing
place by the previous testing place in advance, that is better than
leaving your own copies. But if that has not happened, leave
your copies for the radiologists to use as comparisons. But BE SURE
TO LABEL THE ENVELOPES AS: “PATIENT COPIES – RETURN TO PATIENT”.
And write your address and phone number(s) on the envelope. Also, ask
how and when you will get the films/CDs you leave back. And get a phone
number and name in case you need to follow up on this.
2) Instructions / Notes Memo for Radiologists and Technicians:
We recommend bringing some neatly typed PAPERWORK to the exams, which
can help the technicians and radiologists do a better job with your
diagnostics. The physicians who ordered your test(s) filled out a very
short form, which usually gives very limited information about your
case. In many cases this is adequate. But if you bring more details,
it can often help in making sure nothing gets missed. Not only are there
variables in how some tests are run…the films (or digital pictures)
are read by human beings. Reading these images is not an exact science,
and is surprisingly subjective. If they have more information, they
may be inclined to utilize it in their reading of your studies. SO…We
encourage patients to write up a document (Memo) to hand to Radiology
Technicians (for them and to pass along to Radiologists). We recommend
that the “Memo” include the following (in order):
- Your
Name, Date of Birth, Patient ID #, etc.
- The
exact name of today’s Study, including body location(s) (and other
details). (eg. “CTscan of the Head and Neck with contrast”)
THIS IS ALSO TO MAKE SURE THAT YOU ARE GETTING THE RIGHT TEST.
- The
main reasons for today’s study. (Evaluation of tumor change /
screening for possible recurrences / screening for possible metastases
/ etc.) This should also include any SYMPTOMS which may be indicating
things the study should look for. You should also include any recent
cancer history that is specifically relevant for this test. (More detailed/general
history comes later.)
-
For low grade ACC cases: A note which is very prominent, reading:
“Note: ANY CHANGE or POSSIBLE TUMOR EVIDENCE, EVEN EXTREMELY
SMALL, IS IMPORTANT, as this can be a VERY slow-growing (and potentially
slowly regressing) cancer (Acinic Cell Carcinoma).”
- If
it is a study that images (or includes) either lungs or bones, also
write “Acinic Cell Carcinoma is known to metastasize most
frequently to bones or lungs.”
-
A short list of previous comparison studies, with dates (the two most
recent previous identical studies) that they can use to compare with
current one.
- A
list of other recent possibly relevant studies, with dates. For example,
if you had a PETscan a month ago, and you are now doing a full body
CTscan, the PET may be relevant, and they should be made aware of it.
Or if you ran a Bone Scan, which showed increased uptake in your spine,
and you are now getting an MRI of the Spine, reference the Bone Scan.
-
IF you had tumor(s) previously noted in recent scans, then it helps
to copy the relevant text EXACTLY from previous radiology reports. That
way they can compare the areas referenced specifically. (You could also
attach copies of the report(s)).
- A
summary/overview of your cancer history. Enough so they have the basics.
j) If you need copies of the films / DVDs from TODAY’S STUDY sent
anywhere (or extra copies for yourself), note that at the end of memo.
(And try and arrange to get those copies for yourself before you leave.
It is usually easier THEN than later.)
-
Include your address and phone number.
-
THANK THEM for taking the time to read your document.
Acinic Cell Carcinoma is usually a slow
growing cancer. If recurrences are caught early, when they are small,
we at ACCIC feel that you stand a better chance of getting rid of them
completely, and not having more recurrences or metastases later. We should
note that (unfortunately) at this time (7/05), there are no curative systemic
treatments known for this cancer. So sometimes you may find metastases/
recurrences, but not have any good (permanent) way of treating them. Some
physicians would conclude that early stage diagnostics are therefore unjustified.
We cannot agree with that. It is our experience that the tumors that hang
around for awhile are the ones that cause more problems. And at least
if you diagnose tumors early, there MAY be better or more options for
getting rid of them, than when they are larger. There are numerous physical
methods (surgery, radiation (many types), RadioFrequency Ablation, Lasers
etc) for dealing with small tumors. So doing these follow-ups and diagnostics
can protect you from potential nightmares in the future.
We feel that there are certain diagnostic exams that are easily recommended,
and without much discussion. Other diagnostics, especially with regards
to radiology are sometimes not as clearcut as to which are the best exams,
and how often to perform them. And there are choices between getting one
or another. As a general statement, we would say that Whole Body tests
available now will usually not give as detailed results as most individual
tests. So a combination of whole body surveillance and individual more
focused studies is suggested in order to maintain a vigilant regimen of
diagnostics.
Physical exams of head and neck area by oncologist or
ENT/Otolaryngologist.
Do at every follow-up (assuming primary site was in parotid gland, or
other head and neck site.)
Physical exams (if possible) of any areas where there were previous
cancer sites. Do at every follow-up.
Blood Tests: Routine blood and metabolic panels should
be done at most follow-ups, and definitely during treatment periods.
MRIs and/or CT Scans of Previous/Current Tumor Sites:
The most detailed imaging studies possible should be performed pre-treatment
and post treatment. After that, they should be performed periodically.
Frequency is dependant on case specifics.
CT Scans of the Chest (Lungs): At this point, this is
the best imaging study for revealing small or low grade lung metastases.
Some newer machines give greater detail, and are more likely to diagnose
small or early stage tumors. These include spiral (or helical) scans and
multislice CT or multidetector CT (MDCT). If these machines are not
available, “fine cuts”should be specified. We generally
recommend annual studies of chest. However, risks of repeated radiation
exposure should be considered. So for low risk cases of low grade ACC,
the interval may be extended, subject to case specifics. IF a patient
is getting Whole Body PET/CT or Whole Body CT surveillance studies, they
could include the Chest CT (as long as it is as detailed/sensitive as
individual CTs described above).
“Low Radiation” Radiographic Studies of Chest:
This may be an even more precise study for diagnosing lung tumors. It
is not widely used or available at this time. If it is offered, it should
be compared with CT scan with regard to both risks and potential for diagnoses.
Combination Whole Body PET/CT Scans: A relatively
new application of previous technologies, and becoming more widely available.
This may be the most applicable whole body screening for ACC patients
at this time. In general we recommend annual screenings.
However, in low risk cases of low grade ACC, interval between tests may
be extended, subject to case specifics and patient concerns. Exposure
to increased radiation from Whole Body CT may be a consideration for some.
And the issues of long term repeated exposure should be taken into consideration.
Whole Body Bone Scans: If Whole Body CT or Whole Body
PET/CT combo are not utilized, we recommend that this test be performed
annually. However, in low risk cases of low grade ACC, this interval may
be extended, subject to case specifics. If Whole Body MRI is used for
surveillance, we still recommend performing Bone Scans in addition (at
this point). Areas of “increased uptake” on Bone Scans should
be further investigated with more detailed MRI or CT studies.
Whole Body PET Scans: While this test can be useful for
many cancer patients, and for certain applications, it also has some drawbacks.
At this point, we feel that a PETscan by itself is not the most reliable,
especially for diagnosing small or low grade tumors. It can give both
false negatives and positives. PET CAN be utilized for larger tumors and
to assess change in metabolic activity of known tumors. And PET can be
useful in conjunction with other imaging methods. We DO advocate use of
combination PETscan/CTscan combination for whole body surveillance (at
this time). IF you cannot perform those combo tests, PET may be useful
in addition to separate Whole Body CTscans (or CTs of Chest), Whole Body
Bone Scans, or Whole Body MRIs.
Whole Body CT Scans: When Whole Body PET/CT combo scans
are not available, separate Whole Body CTscan and Whole Body PETscan may
be utilized. But when not done concurrently, the combined data is not
as easily evaluated. However this is still better than PETscans alone.
Once again, if this method is used, we would generally recommend annual
tests. In cases of low grade and low risk ACC, the interval may be extended,
based on case specifics and patient concerns of radiation exposure. Frequent
repeated exposure to radiology exams should be taken into consideration,
as cumulative effects of low dose radiation could potentially cause problems.
Whole Body MRIs: This is not yet commonly available.
It should be a safer technology than Whole Body CT (or most other studies),
as it does not use radiation. Indications are that it could be a more
accurate/sensitive study for many parts of body. This is dependent on
the machine, and at this time there are parts that are still more clearly
imaged with CT. IF Whole Body MRI is offered to you as an alternative
to above studies, it can be considered. But ability to image very small
or low grade tumors as well as details of lungs and bones needs to be
assessed. So, if there is any question, Chest CTscans and Whole Body Bone
Scans should be additionally ordered. PETscans should also be considered
in conjunction with the MRI, if possible.
Summary on Whole Body Surveillance:
- The best current option seems to be Whole Body Combination PETscan/CTscan.
- IF that is not available, second reasonable option would be separate
Whole Body CT (with detailed lung study included), in addition to Whole
Body PETscan. Whole Body Bone Scan could be done in addition, but in most
cases it should not be warranted.
- Third Option might be Whole Body MRI (if available). This MAY be a better
option than whole body PET/CT in the future. If bones and/or lungs are
not very detailed, additional Whole Body Bone Scan and Chest CT may be
required.
- In general at this time, localized studies are more accurate and see
more detail than whole body studies. Anything questionable found on Whole
Body studies will likely need to be examined in more detail with more
localized diagnostics.
- Whole Body Studies (other than MRI) all expose patient to very low doses
of radiation (some more than others). Over time, if one gets MANY of these
tests, there are higher potential risks for inducing disease. This should
be taken into consideration on a case by case basis.
Needle Biopsies (Fine Needle Aspirates): Should
be performed on undiagnosed PRIMARY tumors whenever possible. This applies
to all unknown suspicious masses/nodules of any significant size, and
especially to salivary gland (and specifically parotid gland) undiagnosed
masses. The exception might be very small nodules near the surface that
can be COMPLETELY excised with definitively clean margins. In those cases,
the excision itself may also be the biopsy. For potential recurrences
or metastases, we recommend needle biopsies whenever possible. Patient
risks should be taken into consideration. When there have been multiple
recurrences or metastases in same (or similar) locations, then the assumption
of progressive disease may be made in lieu of needle biopsy. All needle
biopsies should be followed by detailed pathological examination and identification
of biopsied tissue.
Self Exams and Notation of Symptoms: In addition to the Physical
Exams by physicians and Radiologic Imaging Tests described above, one
of the most valuable tools for early diagnoses of recurrences or metastases
is the patient themselves. Report any suspicious “bumps”,
“lumps”, recurrent or progressive symptoms to your physician(s),
and have them evaluated SOONER RATHER THAN LATER.
--------------------
We hope that in the future, through the advancement of diagnostic technologies,
that it will become clearer and easier to make definitive recommendations
on these subjects. In the meantime, we have tried to provide you with
the latest information and most informed recommendations.
We at ACCIC feel that it is important to keep informed about the latest
advances in radiology, and which exams will potentially yield the most
accurate results for ACC patients. (So check back with us from time to
time to see if there are updates to this page.) We do feel that questions
of risks created by the tests themselves should be considered, based on
the most recent studies and data, as well as the specifics of each patient’s
case and concerns. And the frequency of tests should be considered with
regard to this. But this should not keep ACC patients from getting
the studies and follow-ups they need in order to catch new tumor growth
as early as possible. Patients however need to consider these
questions and make appropriate balanced choices for themselves.
By the way, if you haven't read the "Patient To Do List" page
of the ACCIC website (at www.aciniccell.org), check it out. Some of this
information is there. But there are also a number of other items related
to case management in general that could be useful for you.
By the way, if you haven't read the "Patient To Do List" page
of this website, we recommend reading that as well. A bit of this information
is included there. But there are also a number of other items related
to case management in general that could be useful for you.
There is also a short “summary” version of this information.
You can read that on the “Patient
To Do List” page, or go directly to the "Diagnostics
/Follow-Ups To Do - Summary" page. Please check “last
updated” dates to make sure you are reading the most recent information.
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