The following list has been written by Edgar Stroke, the creator of this website. Edgar is a cancer patient, who has been dealing with Acinic Cell Carcinoma since the early 1980s. He has also been doing extensive research on this rare cancer and related subjects since 1993. Edgar has become a very experienced layperson, but a layperson nonetheless. He is not a medical professional. This list should therefore be considered Edgar’s “opinions”, not professional medical advice. This document is not a substitute for professional health care.  We do however encourage you to consider these suggestions and discuss them with your physicians. Treatment decisions should be made based on consultation with licensed health professionals. Also, please note: This page is copyrighted by Edgar Stroke and may not be re-published in any form.

This page last updated July 16, 2005.


EDGAR’S PATIENT “TO-DO” LIST

Based on my experiences as an acinic cell carcinoma patient over the past 20 years or so, I have been put into the position of having to learn about many things that I never expected to. Some of what I have learned has come from mistakes that were made by me or by others. Some has come from diligent research on my part, and by making more informed decisions. And some of it has come just from having to go through the various processes and logistics of medical care for many years. I have created this website (and the acinic cell email group at ACOR) so that the many things I have learned are not wasted by just being useful to me. I figured out at a certain point that all the little details I have accumulated could be useful to other acinic cell carcinoma patients. Many of these “helpful hints” are also applicable to patients with other types of cancer, as well as those with other “rare diseases”, who need to take a more active role in their own health care.

So in this section of our website I have tried to cover a few of these details and “pearls of wisdom” I have collected. Some of the list gives practical suggestions and specific things “to-do”, while some of it falls more under the heading of “philosophy and approach”. Please keep in mind that these are all my opinions, and not licensed or professional medical advice. I hope they are helpful nonetheless. And do feel free to pass these suggestions along to your physician(s), a nd ask them if they make sense for you and your case specifically.


1) TAKE RESPONSIBILITY FOR YOUR HEALTH AND MEDICAL CARE
No one ultimately will care more about your own medical care than you (or your loved ones). Even if you have the most caring and sensitive physicians, they can never be as intimately involved with your case as you can. Simple logistics dictate that doctors who have multiple patients can never spend as much time working on your case, as you (or your loved ones) can (theoretically). You have only one case to think about. They have many. These realities are not as important when you are dealing with a common illness, or with a standard treatment protocol. But in this case YOU HAVE SOMETHING VERY RARE AND UNUSUAL. It is also a disease without a standard curative treatment. Both of those characteristics dictate that more time will likely need to be spent considering treatment options, follow-ups, etc.

IIn my opinion, there are two kinds of physicians: The Generalist , who has the time to learn a limited amount about MANY different subjects. And The Specialist, who has the time to learn a great deal about a very specific area. In the case of a very rare disease (like acinic cell carcinoma), NEITHER of these kinds of physicians usually fits the bill. This is not meant as a disparaging remark, rather a practical observation. Doctors have limited time. They have many patients, and they have to constantly be learning about new things. It just usually makes more sense for them to learn about diseases that they are more likely to treat, rather than the really rare ones. That is also why most doctors have never even heard of acinic cell carcinoma, let alone ever treated a case. (Of course there are exceptions, and certain specialties should at least have heard of it.) Some specialists (such as ENTsurgeons) do not necessarily need to know all about the disease to perform many aspects of their role in treatment. But by and large, most physicians are not specialists in acinic cell carcinoma. And that means that they are not always able to give you informed treatment advice. So what all this adds up to is that as the patient, YOU have to take on more responsibility.

Obviously, you are already doing this to some degree, because you have come to this website. One possible next step is to take what you learn here, and pass it along to your doctor(s), so they can use it to make more informed decisions about your case. This will save them time, and likely will help them to treat your case with more positive results.

This does NOT mean that you should ignore the advice of your doctors, or assume that they don’t know what they’re talking about. Obviously they have gone through a lot of professional training to get where they are. And they may have a great deal of treatment experience to bring to the table as well. Sometimes general medical experience is just as useful as knowing the specifics of a certain disease. But what you as the patient also need to be aware of, is that just because they are “doctors” and wear white coats, you can’t automatically assume that they know everything they need to about this extremely rare disease. And just because they are wearing those white coats, doesn’t mean that you have to abdicate responsibility for your treatment, and turn it all over to them. They are human beings. Some will know more, some will know less. Some will have more experience, some will have less. Some will be open to your input. Others won’t.

You should be able to have an open dialogue with your physician. You should be able to ascertain from them how much experience they have had with this cancer and treating it. You should be able to feel comfortable telling them about things you have learned on this website (or elsewhere). And the doctor(s) should be willing (eager even) to LEARN MORE ABOUT THE DISEASE AND TREATMENT, especially if they don’t know it already. This may even mean learning a few things from their patient who has done a lot of research. It is my experience that the good doctors who put their patients before their egos WILL be willing to do all these things and more. There are plenty of doctors out there who when they don’t know about something WILL try and learn more about it. So even if they haven’t had the clinical experience themselves, they are willing to learn about it. And they may be very happy to learn about sources like this website. Hopefully these are the doctors treating you. It is very important to note that you don’t necessarily have to have an ACC expert handling your case, as long as you have a good caring doctor, willing to learn more about it.

On the other hand, you may find physicians who are not interested in what you have to tell them, or who think they have all the answers, even if they are not that familiar with acinic cell carcinoma. In those cases, perhaps it is time to consider taking your business elsewhere.

Obviously there will also be some physicians out there who have had more experience dealing with this disease. (We have tried to list some of them in our “Treament Centers and Doctors” section). And these doctors may even be able to inform and treat you based on their previous hands-on experiences with ACC patients. That can be very useful.

On the other hand, you might find a doctor with lots of ACC treatment experience who is not as caring a person as the one with less expertise, or with whom you don’t feel comfortable for some reason. So sometimes the physician with less expertise but more interest in your case may be the better choice for you. These are the kinds of decisions you have to make as an involved patient.

The important thing to remember, no matter how informed or experienced or caring your physicians are, is that this is YOUR CASE, YOUR BODY and YOUR LIFE. So you need to be (at least) an equal partner in making decisions about your case. Don’t abdicate that.

Since this is a disease without a definitive course of treatment, or a standard successful protocol leading to cure; you will usually need to consider different opinions, from research in places like this, as well as from different physicians. That is where it becomes YOUR responsibility to make choices. Some of you may feel uncomfortable with that role. You may feel much more comfortable letting “Marcus Welby” make these kinds of decisions for you. (After all, most of you didn’t go to medical school, so that is understandable.) Unfortunately Marcus was just a TV character. And most likely Marcus hadn’t ever heard of acinic cell carcinoma. So you need to help him out.

The key is getting informed…both for you and your doctor. You need to learn what you can…pass it along…and tell your health professionals where they can learn more themselves. All I am really saying is that you can’t just sit back and blindly trust others to make life and death decisions for you, without your taking on some of the responsibility as well.

If you agree that taking on some responsibility for your health care is a good idea, here are some specific suggestions about how to go about doing that…


2) EDUCATE YOURSELF
Obviously if you have gotten to this website, you have already made the decision to learn more about this cancer. That’s great. I feel that it is important for anyone with any illness or medical condition to educate themselves about it as much as they can. By being educated, you will be more informed when you go into doctors’ meetings. You will be able to ask informed questions, rather than nieve ones. Meetings with physicians can be more productive, and be “discussions” rather than “educational lectures”. You can discuss treatment options, pros and cons, etc, rather than learning basic facts you could have learned elsewhere. Doctors meetings often have time constraints. So now you will be able to spend more time on productive discussion. Also, you may be able to introduce subjects that the physician would not have intitiated themselves. You can ask questions about details you read about, and how they relate to YOUR case.

In the case of an extremely rare disease like this, educating yourself is even more important. If you do a lot of reading and gathering of current information, you MAY find out things that the doctor hasn’t heard of yet. And you can direct them to that information. As mentioned earlier, it is likely that YOU will have more time to spend researching your case than a doctor will. After all, THEY have many patients. You only have one – YOU. So by educating yourself, you may be able to help your doctor treat you more knowledgeably.

Even if your physician is very knowledgeable about the disease, the fact that you have become informed yourself will only enhance the quality of discussions you are able to have with them.

No one is expecting you to suddenly become a medical professional, just because you went to a website and read a few articles. And in fact, sometimes a little knowledge can be a dangerous thing, especially if you do not see it in context, or with the appropriate experience. I am certainly not expecting all of you to be able to read medical journals and understand everything . Sometimes you will understand certain things, but not others, which may lead you to mistaken conclusions. Obviously trained health professionals will be able to understand many of the articles enclosed on this site more than most patients. On the other hand, the “abstracts”, or article summaries, are usually pretty easy to understand, especially after you’ve read a few of them. In addition, I have usually included “Overviews” of subjects on many of the introductory pages of this site. If you read the Overview, you may not need to read the individual citations. OR, at least the Overview may give you a perspective which puts the citations in context within a bigger picture. I have also always provided a short synopsis of each citation listed anywhere on the site. Often that is all you will have to read to get a summary of the citation subject. One important thing to remember is that just because one article draws a certain conclusion, that does NOT mean that all articles (or researchers) agree with that conclusion. Despite the potential pitfalls of lay people reading literature they may not understand… I think the general idea of “getting informed and educated” outweighs the potential dangers. Everyone should do whatever they can, and whatever feels right for THEM/YOU.

The key is to learn enough so you can do the following things:
1) Learn enough so that YOU feel you understand what disease you have, what your prognosis is, and what your treatment options are.
2) Learn enough to be able to help your doctor help you.
3) Learn enough so you can have an informed and understandable discussion with your doctor(s) about treatment options, follow-ups, etc.
4) Learn enough to be able to ask intelligent questions.
5) Learn enough to be able to make INFORMED DECISIONS about your case.

One Practical Note:
This is a very comprehensive website. And,as with in any internet work, it is easy to go down some road, get sidetracked, and never return. I recommend taking a moment to think “What is most important for me to learn right now?” Then scan the list of “buttons” to sub-pages on the Main page of this site. Look for the pages that might hold the quickest answers to that question. Go to those pages first.


3) ASK QUESTIONS – GET ANSWERS
Whenever you go to a doctor’s meeting, you need to PREPARE for it. No one probably ever told you that before. But you have to think of this as a very important meeting…in fact a meeting that may determine the outcome of YOUR LIFE. To prepare for that meeting/consult, you need to do the following :

BEFORE THE MEETING:
1) Write down a list of questions.

2) Think of questions that might follow some of the doctor’s answers to your questions.

3) Organize your list of questions so that the most important ones are asked first. That way if you run out of time those aren’t the ones left unanswered. (I try to write my questions on the computer so I can re-order things as needed.)

4) Do as much research on the subject of the meeting as possible beforehand. That way you can ask INFORMED questions. You will now be able to discuss things such as other treatment options , or potential side effects, that perhaps the doctor would not have brought up on their own.

5) Always bring a writing pad, and writing implements.

6) If it is okay with your doctor (and you feel comfortable with it), some people bring a little tape recorder instead of trying to write everything down in the meeting. (Make sure the doctor knows it is just so you “get all the information”, not for any other reason.)

7) If the meeting is about really big important decisions, and you know you will have a lot of questions… Try and get the meeting scheduled for a longer time slot. Talk to the doctor’s nurse or secretary and try to find out which time slot will result in you getting the most time. Sometimes that is the last appointment of the day. Sometimes you can request a longer time slot as well.

IN THE MEETING:
1) Let your doctor know right away that you have brought a number of questions to ask, so that he/she allots time for that.

2) Ask the most important questions first.

3) If you are writing answers down (as opposed to recording them), write short answers with KEY WORDS. Leave space for the rest of the answer on the paper. (Then after you leave, you can fill in the rest of it.) Obviously if you know shorthand, this is even better.

4) Sometimes it helps to bring someone else WITH you to important doctor meetings. Then there are two sets of ears to hear things, and two sets of hands to take notes as well. (Or it frees you up to listen better while your companion takes the notes.) The other advantage of this is that there is someone to discuss the meeting with afterwards. This can be very helpful if you are having to make a difficult decision about something.

5) Make sure you understand the things the doctor tells you. Ask the doctor to re-explain things if you don’t.

6) Think of questions based on the doctors’ answers.

7) Ask the Doctor if he is willing to answer more questions later by email (many are doing that these days). That also will take the pressure off of having to answer ALL your questions in a short meeting. Don’t forget to get the doctor’s email address, if they say it’s okay.

8) Ask the doctor for copies of any paperwork or test results that have been run recently. (It is usually easier for a nurse to make a photocopy of things while your chart is out after the meeting, rather than to request it later.)

9) Don’t forget to ask for any prescriptions you may need.

10) Discuss any tests that should be done for follow-ups or diagnostics.

11) Schedule your next meeting, or procedure or tests.

AFTER THE MEETING:
1) Immediately sit down somewhere and fill in all the missing notes from the meeting.

2) If you brought someone with you, use them to help you make sure all your notes are correct and complete.

3) If you brought someone, discuss the meeting with them, and their opinions of your doctor and the subjects discussed.

4) Take the time to carefully consider what has transpired in the meeting. Read over your notes. Sometimes one gets emotionally involved with a reaction (either positive or negative news), and then forgets to both deal with the details, or to take the time to really understand the situation. Sometimes this also leads to hasty decisions, that perhaps should be considered more carefully.

EMAILING DOCTORS:
These days, many doctors are finding this a valuable way of communicating with patients, because they can deal with their emails at their convenience, on their schedule. This can also be an extremely efficient way of getting patients’ questions answered, without having to have an office visit or to avoid the challenge of phone calls not always connecting people. I do however have a few suggestions for keeping the email system working:

1) DON’T INUNDATE YOUR DOCTORS. Try and limit both the frequency and to some degree the length, of emails. If there is one thing that most doctors have in common these days, it is that they are very busy. So if you bug them too much, they may react accordingly. That doesn’t mean to settle for not getting your questions answered. It just means that you should be aware and careful. I use email as a “once in awhile” option. That way you don’t abuse the privilege, and they won’t get annoyed.

2) Pick your questions carefully. Don’t ask them questions that you can get answered for yourself (like on this site). Instead, save the questions for them that you really want THEIR opinion or answer on.

3) Try and save questions until you have a few to ask. I find it is better to send one email with 5 questions, rather than 3 emails in one day, or 5 emails in 5 days. On the other hand, don’t send emails with 50 questions. Use your discretion. The way your doctor replies to your emails is usually a good indication.

PHONING DOCTORS:
At certain times a phone call to your doctor is more appropriate than an email. If you really need to have a “discussion” about a subject, which could have a lot of back and forth Q&A, then that may indicate a phone call is required. On this subject, these are my observations:

1) Most of the time when you call a doctor, you will have to leave a message (unless you tell the receptionist or secretary that it is truly urgent). By the way, DON’T SAY IT’S URGENT OR AN EMERGENCY UNLESS IT TRULY IS.

2) Ask the person who takes the message WHEN it is likely that the doctor will return your call. This is so that you know which phone number(s) to give them.

3) Leave the phone number that YOU KNOW YOU WILL BE AT at about the time the doctor may call. Tell the person who takes the message that you will be at “such and such number” from “this time to this time”. If you have multiple phones, which you will be at at different times, leave all that information. What you are trying to avoid is the doctor calling and not getting you. Phone tag is not a fun game with doctors. Better to make sure you are there when they call.

4) Once again, write a LIST OF QUESTIONS before the phone call. Put the most important questions first. And arrange the questions in a logical order that would follow the intended discussion.

5) Make sure you have something to write with prepared, so you can write down the doctor’s answers.

6) Once again, be aware that the doctor has limited time. Try to prepare questions that are not redundant, and that are truly questions THEY have to answer. Don’t waste their time with questions nurses or secretaries can answer. You can call those people separately.

7) Things like prescriptions, scheduling, and most logistical questions can be handled by nurses, secretaries, receptionists, etc.


4) GET YOUR MEDICAL RECORDS AND FILMS
Many people do not realize that you have a right to have any and all of this in formation. In the case of a rare disease like ours, it’s even more important. Often, you will want to seek second opinions, or get treatment at another medical center . This is all simplified if you already have all your medical records (and also if you keep them organized.)

I recommend getting copies of all doctor meetings, all test results, all radiology reports, all films. Usually you can arrange this directly through your doctor, or your doctor’s secretary or nurse. In larger hospitals or cancer centers, sometimes you have to request such items from the Medical Records department . This usually takes longer, and sometimes fees are charged. I recommend asking the people that are treating you or know your case, first. These people will often be able to accommodate requests like this easier , quicker (and cheaper) than the Records departments.

Films for tests run in the past can usually be requested from the film libraries of your medical center. These will usually end up being copies of the original films. It is better to request a duplicate copy of films AT THE TIME YOU GO IN FOR A TEST. You can tell the radiology technician BEFORE the test that you have an unusual case, and that it is (or may be) followed in different locations. So “can you please run me a second set of films?” They will usually be able to accommodate you. And in this case you will usually get a duplicate original, which is better quality than a copy. Also, you may not be charged a fee if you get the films directly from the radiology department and not the library. To save fees, you can also arrange for the films to be sent to a specific doctor (not at the institution tests were run). Usually you are not charged for films (or medical records) shipped directly to another physician. However, then they will not be in your possession either. Sometimes you can get your films and records shipped to that doctor you will meet later. Then, after that meeting, you can request copies (or the originals they received) directly from them, at no charge.

After you get your medical records and films, keep them organized. I label all my films by date, and keep them stored in large envelopes, each for a different year. I keep official medical records in separate envelopes organized by year, and as copies in a binder in chronological order. I also keep all the notes from meetings with doctors, test results, emails, phone conversations etc. in binders, in chronological order. This way I can always refer to a previous note or record if needed.

Don’t ever give away your original copies. If you need to give a new physician copies of records, make copies, or have their nurse or secretary make copies of your originals when you get to the office.


5) TREAT EACH CANCER SITE AS EFFECTIVELY AS YOU CAN (WITHOUT UNDUE RISKS), TO INSURE AGAINST FUTURE RECURRENCES
With any cancer it is better to catch and treat it earlier rather than later. Sometimes the fact that Acinic Cell Carcinoma grows slowly, and can have an indolent course of progress can be misleading. In fact there were times when ACC was considered “benign”, which it is NOT. (Some physicians using older textbooks and information may STILL consider it benign.) The fact is that although most cases of ACC are slow-growing and “low-grade”, the disease also has incredible resilience, and a strong propensity for recurrences and metastases. The likelihood of both of those outcomes increases when the primary tumor is not treated fast enough or effectively enough.

Specifically, when tumors are left untreated until they are 2 cm or larger (classifying them as Stage II), risks increase. Risks of local recurrence or metastases (distant recurrences) also increase with insufficient tumor removal, or presence of tumor in lymph nodes or blood vessels. The goal of any surgery should be complete removal of all tumor.

At this point in time, if complete surgical removal is not successful, or if there is residual disease (suspected or actual), the best course of action is post-operative radiation therapy. You have a number of options of different methods of radiation to consider. At this point, I feel that the best (currently available) option for local tumor control is High Energy Fast Neutron Beam Radiation. As of 2002, this treatment was available at nine (9) facilities throughout the world. There is another form of “high LET” Radiation Therapy called Heavy Ion Radiation. It is also a heavy particle beam, like Fast Neutrons. But it is more focusable /controllable, so it can potentially avoid some of the side effects risks to nearby tissues posed by Neutrons. As of 2004, this treatment was only available in two locations in the world; GSI in Darmstadt/Heidelberg, GERMANY and HIMAC in Chiba, JAPAN. Last we knew (2004) the German facility was not taking ACC patients. (But that could have changed.) The Japanese facility we are not sure about. (If anyone gets an ACC case treated at either facility, please let us know!) There is also the option to consider of using conventional radiation (photon and electron beams). Our opinion is that in general, conventional radiation is not effective in the long term against Acinic Cell Carcinoma.  Some data indicates that Accelerated Hyper-Fractionated dosing schedules of conventional beams MAY be more effective on these kinds of cancers than standard dosing methods.  There is not enough data on this that we know of to make a strong statement. On the other hand, most data indicates that High LET radiation, such as Fast Neutrons or Heavy Ions will be more effective in the long term for slow growing salivary gland cancers like low grade ACC. If there is only suspected or minimal microscopic residual disease, the conventional options are often chosen, and this may be adequate for those cases. Patients and physicians who want to be more proactive and increase their chances of control, will often choose the high LET methods. But they do come with some higher risks of side effects, so that also needs to be considered. What is unfortunate is that even for higher risk cases, the choice will often be made to treat a patient with conventional radiation simply because it is much more widely available and convenient. Other physicians will not offer patients the Fast Neutron/Heavy Ion options because they do not know about them, or they are not well informed about this cancer. We feel very strongly that not fully informing patients on this subject is irresponsible. But yet it happens constantly. For cases of incomplete tumor removal, macroscopic residual disease, larger primary tumors, invasion of lymph nodes or blood vessels, higher grade ACC (and other risk factors) use of Fast Neutron or Heavy Ion Radiation is definitely recommended. It is likely that these methods are more effective at local control in all cases of this cancer. However, there are other factors, such as potential side effects, availability of treatment centers and qualified facilities, patient location and financial concerns, etc. that make treatment of all ACC patients with Fast Neutrons impractical, or not justifiable. Each case needs to be considered individually, but the patient needs to be given enough GOOD information to make an informed decision. It is worth noting that there are a number of other radiation therapy options not mentioned in this brief summary. That includes Proton Beam and variousconventional delivery methods such as IMRT, Stererotactic, Tomotherapy, etc. While these treatments can be useful for many cancer patients and many cases, they are still low energy radiation, and in our opinion not as effective for long term control as Fast Neutrons or Heavy Ions. They may have application for some ACC cases in specific situations, but not as a general rule. You can read more about the various forms of radiation on the Treatment pages of this site.

In some cases, surgery is challenging, and complete tumor removal is unlikely. This may be due to either size or location of tumor. Sometimes, pre-surgical evaluation indicates that complete tumor removal would result in damage to critical structures such as the facial nerve or hearing. In those cases, Fast Neutron Radiation may be considered as a SOLE TREATMENT INSTEAD OF SURGERY. This may result in better patient outcome, with less damage to critical structures, and more local control.

What is important to remember is that it is best to treat the primary (first) site of this cancer as effectively as possible, however it is done. You want to do the best job you can of controlling the disease LOCALLY, to hopefully insure against both local and distant recurrences later. At this point in time, the best weapon we have to try and insure this, is radiation treatment, and specifically Fast Neutrons. (And possibly Heavy Ions, if they are available.)

IF the primary tumor site was NOT treated post-operatively with radiation, and there is a recurrence, the same philosophy holds. TREAT THE SITE OF RECURRENCE AS EFFECTIVELY AS POSSIBLE TO INSURE AGAINST ANY MORE RECURRENCES OR METASTASES. Sometimes this means treating the recurrence only surgically, if the tumor can be totally removed without residual disease, and without patient deficits. Radiation treatment does pose risk of side effects which in some cases may not be warranted. There is still debate in the field as to whether complete tumor removal surgically is as effective as surgery with post-operative radiation, with regard to long-term control.

In some cases, if a patient was treated with conventional (photon/electron) radiation, and then had a recurrence in that area anyway (which happens quite often)… Fast Neutron radiation to the same site may be considered. There is some danger in over-radiating the area, as normally radiation treatment is given to the maximum tolerance of healthy tissue. Each case needs to be evaluated individually as to the potential risks and benefits. The choice may then be between tumor control versus permanent side effects.


6) DO ROUTINE AND FREQUENT FOLLOW-UPS AND DIAGNOSTICS

RECOMMENDED FOLLOW-UPS, RADIOLOGY TESTS /
IMAGING STUDIES, OTHER DIAGNOSTIC EXAMS FOR ACC PATIENTS:

(Short “Summary” Version)

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.

    Notes: 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. 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. 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.


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 on Diagnostics and Follow-Ups:
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, Embolisation 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.

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 or related pages.) 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.

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.

You can read more details about this subject on the "Radiology / Diagnostics To Do" page of this site.  The full URL is http://www.aciniccell.org/radiology_diagnostics_todo.html

There is also a general page on Diagnostics and Followups, which provides detailed information about many different diagnostics and also applicable literature for ACC patients. The full URL is http://www.aciniccell.org/diagnostics_followups.html


GENERAL RADIOLOGY PREP NOTES:
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.


THINGS TO BRING TO YOUR RADIOLOGY TESTS:
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):

a) Your Name, Date of Birth, Patient ID #, etc.

b) 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.

c) 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.)

d) 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).”

e) 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.”

f) 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.

g) 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.

h) 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)).

i) 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.)

k) Include your address and phone number.

THANK THEM for taking the time to read your document.


7) BE VIGILANT, BE AWARE, REPORT SYMPTOMS
As a cancer patient, you need to be very aware about changes in your own body. And you need to report those changes to your physician(s) in a timely manner. No one can know better than you when something feels “different than normal”. And because of your history, any unusual sensations or masses or other abnormalities need to be considered as potential evidence of cancer growth. Don’t let these kinds of suspicions go on too long. Report changes or symptoms to your doctors. Often they may be nothing. But then you will have peace of mind. Other times, you may catch something early, when it is always easier to deal with.

One thing to keep in mind is that, most of the time, acinic cell carcinoma is a slow-growing cancer. And often because of this, tumors may silently grow without causing noticeable symptoms for a long time. So even slight changes in your body that only you will notice, may be indicative of something bad going on.

This of course does not mean that you should run to your doctor for every little odd feeling you have. You have to use your judgement. Sometime you’ll get a weird pain or discomfort, that happens once, and you never feel again. People and their bodies often get strange sensations. But if something happens more than once, or it lasts several days or weeks, or it is a sudden and serious pain or symptom, or something is visibly growing… Don’t wait around! Call your doctor and get it examined. Get tests run if appropriate. Do all the diagnostics you need to. Catch it early, not late. Better safe than sorry.


8) DO SOME “SUPPLEMENTAL/COMPLEMENTARY” THINGS TO HELP YOUR BODY FIGHT THE CANCER AND STAY FREE OF DISEASE
While we have mostly been talking about “Conventional” and Western methods of cancer treatment, it is important to note that most of those methods deal only with the results and symptoms of the disease, and not with the causes. In order to fully deal with the cancer, you have to help your body’s immune system to fight the disease, and also to protect it as much as you can, from getting cancer again. Towards that end, we introduce the vast subject of “Alternative”, “Complementary” and “Supplemental” methods. You can read more about these areas on the “Treatment” pages of this site. Some of these treatments are regimens that are non-conventional or non-Western “Alternative” treatment options. But some treatments are more “supplemental and complementary” to conventional treatments, rather than “alternative”. These methods can work in conjunctio n with, or in addition to, the “conventional” treatments, to keep your body strong during treatment, keep your immune system working, and help to stop the cancer from recurring. These complementary methods may include such things as vitamins and supplements, as well as nutrition/diet and lifestyle choices. There is a great deal of information on these areas, and much of it is in disagreement. We recommend trying to get hold of the most recent reliable data, when making decisions about these areas. We hesitatingly offer some methods that we think have more validity and documentation for cancer patients in general, based on the research and information we have accumulated. But this should not be considered a definitive list.

Some of the things we think are likely helpful and without much controversy are:
- Eating lots of fruits and vegetables
- Avoiding processed foods with chemicals, preservatives, hormones, etc.
- Eating organic foods if possible.
- Drinking lots of clear clean water, with as few chemicals as possible.

Some of the things that we recommend, but that may be more controversial are:
- Eating less sugar, especially refined sugar products.
- Eating less red meat.
- Drinking less alcohol (but not necessarily cutting out). Some moderate amount of alcohol (and red wine) may actually be healthy.
- Drinking Tea (both green and black seem to have their benefits)
- Taking certain well-documented anti-cancer supplements such as Coriolus Versicolor mushrooms, or their derivatives PSK and PSP. (One of the best preparations of these products is the Mushroom Science brand, which is hot-water-extracted.)

Note: We HAD been recommending a regimen high in anti-oxidant vitamins and other anti-oxidants, such as Selenium. Over the past few years, new data has come out which leads us to question this recommendation. Some studies show that high doses of Vitamin E, Vitamin C or Beta Carotene may actually be harmful. And there may be some dangers to taking high antioxidants during Radiation or Chemotherapy, as it could affect the effectiveness of therapies. (This requires more detailed examination.) We still feel that some higher dosages of Vitamin C and other antioxidants MAY have some benefits for the average patient. And other supplements may also be helpful. But we do not feel knowledgeable enough in this area to make strong recommendations. These areas should be evaluated using other more informed sources. As a general conservative statement here, we think that the amounts of vitamins available in most multi vitamins are a reasonable place to start, and likely not harmful. Some data shows that certain minerals and metals may inhibit absorption of antioxidants or other vitamins. This also requires more study.

These are just a few examples of things to think about. WE STRONGLY ENCOURAGE YOU TO SEEK OUT MORE INFORMED SOURCES THAN US ON THESE SUBJECTS. There may also be some additional information on these subjects on other pages of our site, including: the ””ACC Treatment””page and the subpages on "Alternative/Complementary Options ”, “Vitamins & Supplements”, “Diet, Nutrition and Lifestyle”, "Asian Mushrooms", etc. for more details. Please check “Last Updated” dates to make sure you are getting our most recent information on these subjects.        

9) SOME KEYS TO SUCCESSFUL TREATMENT
In summation, I feel that there are a few “KEYS” to more successful treatment of acinic cell carcinoma. Although there is no standard curative treatment for this cancer at this time, in most cases it can be managed as a chronic illness for a very long time, or indefinitely. (I am referring to the more common low grade variety. For the high grade variety, one must be much more aggressive with treatment methods, as it can very quickly become life-threatening.) No matter which grade you have, a successful treatment approach is largely based on diagnostics and timing. At this point, based on current information, these are our general recommendations for the best methods for managing this cancer: This list applies to primary tumors as well as recurrences and metastases . The “keys” are as follows:

1) Catch primary sites early.

2) Catch primary sites when they are small.

3) Get it ALL when it is small and locally contained.

4) Even if it is large, try and get it ALL in the primary location, before it recurs or spreads.

5) Treat primary cancer sites in the MOST effective way possible to insure against future recurrences.

6) Maintain a VIGILANT regimen of follow-ups and diagnostics so that any recurrences (local or distant) are found and treated when they are small and contained.

7) Keep a constant watch (through diagnostic methods, as well as your own awareness and self-exams) for any new possible cancer sites for THE REST OF YOUR LIFE.

8) Treat recurrences in the most effective way possible as well. Whenever possible, treat them quickly and completely.

9) Always consider the “risks versus benefits” question with regards to treatments. Be careful to avoid permanent side effects and patient deficits, whenever possible. TRY and make balanced INFORMED decisions which take into account both cancer control and quality of life issues.

10) Keep aware of new treatments that could be (or prove to be) applicable for this cancer. Stay informed about new protocols and clinical results. Keep updated about news from this site or the Acinic Cell email group at ACOR.org. Consult with physicians. Do your own research. If you have metastatic or aggressive disease, be willing to try new therapies that might be effective.

11) Make diet, supplement and lifestyle choices to boost your immune system and help your body to fight the cancer. Use these in addition to conventional methods.

12) Take responsibility. Make informed decisions, utilizing information from reputable sources. Patients need to take on some of the responsibility for their treatment, especially in the case of a rare disease like ACC. Stay informed so that YOU know what needs to be done to manage your case in an effective way.

13) Do not be afraid to inform and be your own advocate with medical professionals (when appropriate), so that your treatment is handled in the most effective way possible

The “keys” in this list denote a shared responsibility between the cancer patient and their 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.

The information on this page is ©copyrighted by Edgar Stroke. It is unlawful to re-publish or re-distribute this information for profit.

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