This page last updated on July 16, 2005.
RECOMMENDED FOLLOW-UPS, RADIOLOGY TESTS/
IMAGING STUDIES, OTHER DIAGNOSTIC EXAMS FOR ACC PATIENTS
(Short “Summary” Version)
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 for all ACC patients. These also need to be done for FIRST TIME patients, around the time of primary tumor diagnosis, or soon thereafter.
LOCALIZED DIAGNOSTICS:
1) 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.) To
rule out other sites or recurrences near original site.
2) Physical exams (if possible) of any areas
where there were previous cancer sites. Do at every follow-up.
To check for possible recurrences.
3) Blood Tests: Routine blood and
metabolic panels should be done at most follow-ups, and definitely
during treatment periods. Blood tests can show up abnormalities that
may be related to tumor growth, medications, side effects, etc.
4) MRIs and/or CT Scans of Previous/Current
Tumor Sites: The most detailed imaging studies possible should
be performed pre-treatment and post treatment of any tumor site. After
that, they should be performed periodically to determine if a particular
tumor has grown, decreased in size, recurred, etc. Frequency of tests
varies depending on the case specifics. If a tumor site has been treated
seemingly successfully, you will probably run an MRI or CT Scan every
6-12 months. If there is active disease, three month intervals (or
less) are more likely. MRIs and CTs are each better at imaging different
body structures. So they may each be chosen in different situations.
Sometimes both types of study are ordered.
5) CT Scans of the Chest/Lungs (with
contrast): Lungs
are one of the two most likely locations for metastases for ACC patients.
At this point, Chest CTs are 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, especially for patients with higher risks
for metastases. 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.
Notes:
a) 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 CTscan).
b) In the past, Chest X-Rays had been recommended for lung
screenings or surveillance. But we at ACCIC have learned
that Chest X-Rays will usually not show early stage, small, or low
grade tumors. So for most ACC patients (especially with more common
low grade variety), this study will not diagnose tumors until they
are either widespread or large.
c) The amount of radiation from a CT scan is significantly higher
than that of plain X-Rays. This is still considered a low (and acceptable)
risk by most physicians However it may be a concern for some patients,
and could be considered with regard to frequency of screenings. Overall
lifetime exposure to various radiologic studies (or other radiation
sources) may be a factor.
6) “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.
WHOLE BODY SURVEILLANCE STUDIES:
7) 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. It gives the benefits of searching for
tumor metabolism as well as the more precise scanning of the CT. If
there is a suspicious location found with one technology, it can immediately
be compared easily with the other one. (Separate tests are harder to
align and compare.) 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 to various radiation sources should
be taken into consideration.
Note: Doing this test would replace need for separate
Full Body PET Scan or CT Scan.
8) Whole Body Bone Scans:
Bones are the second most common site for ACC metastases. This (or a
comparable study) should be done for most ACC patients annually. In
low risk cases of low grade ACC, this interval may be extended, subject
to case specifics. Bone Scans will reveal a number of possible problems
in bones (which are not necessarily cancer). Areas of “increased
uptake” on Bone Scans should be further investigated with more
detailed MRI or CT studies.
Notes: If Whole Body
CT or Whole Body PET/CT combo are performed, they could substitute for
this study, although there is possibility that some problems could be
missed. If Whole Body MRI is used for surveillance, we still recommend
performing Bone Scans in addition (at this point).
9) Whole Body PET Scans:
This is a “nuclear medicine”
test, which is used to detect active tumor growth or cancer metabolic
activity anywhere in the body. A PET scan may show early stage tumor
growth, which could make it potentially 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, current data indicates that slow growing
tumors with lower metabolism are not noticed as well by PET, and specifically
slow growing pulmonary nodules may go unnoticed. However, there can
be inconsistencies in results, leading to both false negatives and positives.
At this point, we feel that this test by itself is not the most
reliable for most ACC patients, especially for diagnosing small or low
grade tumors. It may 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 (see above). IF you cannot perform those combo
tests, PET may be useful in addition to separate Whole Body CTscans,
Whole Body Bone Scans, or Whole Body MRIs.
Notes: In order to achieve the most accurate results,
PETscans must be done by experienced people (usually at academic or
research hospitals, or major cancer centers). There are variables in
how test is conducted, and if not done properly can lead to inaccurate
or unclear results. Even with properly executed tests, false positives
and negatives are common. Any suspicious findings on PETscans should
be followed up with more detailed studies of other types.
10) Whole Body CT Scans:
Whole body CTscans can detect small tumors in many areas throughout
the body. When Whole Body PET/CT combo scans are not available, separate
Whole Body CTscan and Whole Body PETscan are a reasonable combination,
and should be considered. But when not done concurrently, the combined
data is not as easily evaluated. However this is still better than PETscans
alone. Once again, we would generally recommend annual whole body surveillance,
and Whole Body CT could be a part of that series. In cases of low grade
and low risk ACC, the interval may be extended, based on case specifics
and concerns of radiation exposure.
11) Whole Body MRIs: This
is not yet commonly available. Indications are that it is a safer technology
than Whole Body CT, and for many parts of body, a more accurate/sensitive
study. IF it is offered to you as an alternative to above studies, it
should be considered. Ability to image very small low grade tumors needs
to be assessed. Ability to visualize lungs and bone in detail are of
prime concern as well. 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.
OTHER DIAGNOSTICS:
12) 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.
13) 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.
Summary:
Acinic Cell Carcinoma is usually a slow growing cancer. If recurrences
are caught early, when they are small, you stand a MUCH better chance
of getting rid of them completely, and not having more recurrences or
metastases later. It is usually the tumors that hang around for awhile
that cause more problems. So doing these follow-ups can protect you
from potential nightmares in the future. Questions of risks created
by the tests themselves should be considered, based on the most recent
studies and data, and decisions on test frequency should be made on
a case by case basis . But we caution patients and physicians to make
decisions that will not compromise finding new tumor growth as early
as possible.
We at ACCIC 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. 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. We
also hope that safety concerns will not be an issue at all. In the meantime,
we have tried to provide you with the latest information and most informed
recommendations. Check back with us for updates.
By the way, if you haven't read the Patient
To Do List page of the website, check it out. Much of this
information is there. But also a number of other things that may be
useful.
Note that there is a more comprehensive document on the subjects covered
on THIS page. It is the Diagnostics
/ Follow-Ups To Do page, located on the website at: http://www.aciniccell.org/
radiology_diagnostics_followups_todo.html. We recommend that
you read that material before making diagnostics decisions. There
is also a Diagnostics and
Followups page which provides more details on diagnostic
tests in general, including various literature on subjects relevant
to ACC patients and physicians.
Note: The information provided on this website is for informational and educational purposes. It is not licensed medical advice. It is not intended as a substitute for professional health care. Any medical advice provided (even when given by health professionals, or with corroborating data) is offered as an opinion. The reader is advised to make medical decisions in conjunction with licensed health professionals.