The ACCIC website has been designed to be useful for anyone interested in learning more about Acinic Cell Carcinoma and related topics. Many visitors will be patients. Others will be physicians. Others will be researchers . Different visitors will have different levels of prior knowledge on the subject, and also different levels of medical literature comprehension. We understand that.

We did not want to divide the site into “patient” and “health professional” sections (exclusive of the survey sections), as we did not see that as advantageous to either group. What we have done instead is provide section (page) headings/titles that we felt would direct visitors to the areas that might be most applicable to them. For example, most patients will probably not be that interested in “Pathology Images”, while most physicians will probably not want to join ACC Email Groups (although some may). Some sections of the site may be generally more geared towards patients, others towards researchers, and others may hold material applicable to all groups. In fact, all sections of the website probably have material useful to different visitors. The key is zeroing in on the information that YOU are after. We hope that the various “buttons” on the Main (Home) Page will direct you to your area of interest. We also have tried to introduce sections and give overviews to help you decide if the material you want is located there. (For example, when you slide your mouse over a “button” on the Home Page, a description of that section appears in the magnifying glass. ) There are also more detailed overviews within pages. Finally, in our lists of citations (articles, links, etc.), we usually try to provide a short summary/description of each one, once again to save you time and help you find what YOU are looking for.

One thing to keep in mind is that most pages have “sub-pages” within them. For example, the “ACC Treatment Options” page has 6 sub pages. And those sub-pages may have more sub-sections within them as well. So if you are looking for information on “Fast Neutron Radiation”, you would go to the “ACC Treatment Options” page, then to the “Radiation” page, and then perhaps to the section devoted to “Fast Neutron Radiation” (although there is information in the “Acinic Cell Carcinoma and Salivary Gland Radiation” sections as well). Each page of the website has some sort of introduction, and often an “Overview”, and then a list (often with links) to the sub-pages or sub-sections of that page. We have tried to make things as easy as possible to find. But there is a lot of material to organize. We hope you find our layout easy to navigate.

One example of a page that may have interest for almost everyone, is the “ACC Literature/Articles/Information” page. This page is chock full of information on Acinic Cell Carcinoma, Salivary Gland Cancers in general, Lung and Pancreatic versions of ACC , Biologic Characteristics, etc. But how does a visitor know WHAT to read?
Focus on what YOU need to find out first. If you are trying to decide whether to have (or recommend) surgery or radiation, you probably don’t need to read the page on biologic characteristics of the cancer right away. On the other hand, for a basic researcher who is trying to determine what area of ACC research might hold the most promise, the “Biologic Characteristics” page would be just the place to start. Later, you can investigate other sections, which may add to your understanding and knowledge about the disease, or inform your choices more. But start with the basics.

We realize that many patients visiting this website may never have read a medical article or abstract (summary) before. And we are not suggesting that you have to start doing that now. That is in fact, why we have provided overviews, summaries, etc. in many sections of the website. For example, if you visit the “ACC Treatment Options” page, you will find a general “ACC Treatment Overview” on the main page, as well as summaries ofindividual areas, such as Chemotherapy, on sub-pages.

We have also tried to include as many citations as possible that are written for patients, in a more easily understandable manner. If you are not a health professional, or not used to reading scientific/medical material, you probably want to look for those citations first. For example, there are citations from the National Cancer Institute on Salivary Gland Cancer and Treatment. We provide both “patient” and “health professional” versions, for you to choose from. Once you have read a few items that are written “for patients”, it will make it easier for you to understand the more technical/professional material. We are definitely not discouraging people from reading medical articles (in fact quite the opposite). We just don’t want you to get too overwhelmed or frustrated right off the bat.

Once you do want to start reading medical articles, (or any other citations we have provided), here are some “helpful hints”…

  1. We have provided lists of citations on the various pages. And each citation name and source has a brief description under it. Read the description. Often it sums up the important points, and you don’t need to read the actual article. But sometimes the description may peak more interest to read the citation itself.

  2. You will often have a choice of several “viewing options”. These may include an
    • Abstract – Short overview of an article
    • Full Text – The Full Article (sometimes with graphics, like tables and photos, sometimes text only).
    • Links to the source website, where sometimes there may be more or related information available.

  3. If you don’t understand the citation description (or the article title for that matter), then the likelihood is you won’t understand the citation either. Many citations we have included are about basic genetic research, pathology, and other subjects that will be incomprehensible (and worthless) to most patients. Don’t waste your time reading those. Look for the citations that you can understand.

  4. Keep in mind that ONE article is usually not a definitive answer to a question. Different authors have different opinions. And different studies often yield different results. Also, often surgeons recommend surgery, radiation oncologists recommend radiation, and plumbers recommend plumbing. Authors focus on THEIR area of expertise, often without knowing what other people in other areas are doing. This is not always the case, but it is something to keep in mind. To get a more objective sense of a particular subject, you need to read a number of articles (by different authors), at least. Sometimes you want to read everything that you can find on a particular subject, in order to get a full overview and form a truly “informed” opinion. But that is also why “overview” articles are sometimes very useful as well.

  5. When you are reading about “studies” and “clinical trials”, be aware that there are all kinds. Some studies are just reviews of the literature, and statistics. Some trials involve only a few patients. Others have much larger numbers. Some involve only mice or rats! Some studies cite statistics with “salivary gland cancer” patients, but only include a small number of “acinic cell carcinoma” cases. Some studies are“randomized double-blind clinical trials”. Others are only anecdotal studies. You need to take all these factors into consideration when evaluating a particular subject. We have included a section below this called “Scientific Terms Explained”. This will help you understand these differences.

  6. What is most important is to try and remember in general to discern differences between the various “results and conclusions” of articles …and to remember that all “conclusions” do not carry the same weight. In many cases, the authors are giving their opinions based on THEIR research, THEIR experiences, or their perspective. There is often only theory, not necessarily fact. And it may be left up to you to decide which opinions seem to hold the most validity, based on a review of the literature and a collection of lots of data, not just one or two articles. Also, statistics can be quoted and interpreted in different ways. See the section on “Scientific Terms Explained” below.

  7. In our citation description/summaries, we occasionally provide a hint of whether we find a particular citation valid or not. However, for the most part we remain neutral, and merely summarize the authors’ work. What we have done is put a magnifying glass next to the citations we find extremely informative or valuable. Occasionally, if we find glaring inaccuracies or omissions, we will note that.

  8. We have listed citations in reverse chronological order for a reason. It is usually best to read the most recent material on a subject first, as newer material will often (but not always) reflect newer research or studies. More recent articles will often reference or summarize results of earlier ones, so you may also save time. It is not always the case that the most recent articles hold the most important information, just the most recent publication date. Sometimes that reflects more current thinking on a subject, but sometimes only a more recent “opinion”.

  9. Since acinic cell carcinoma is not heavily studied, and is also quite rare, it is very important to note, that often there will NOT be the kinds of studies or reliable data that we would wish to have. So often you/we have to consider a few cases of anecdotal evidence as more important for decision-making, simply because that is all the information we have. (That is another reason for this website – to increase available information.) Bu t we also often have to consider data from similar cancers, such as adenoid cystic carcinoma, when making evaluations. So we may have to make treatment decisions based on limited numbers and theorizing, and maybe a bit of faith.

  10. Sometimes an Abstract (article summary) is all you need to read to get the information you want. At other times, the important data is buried in the full text of the article. We have tried to provide full text versions of all articles we find important for this site. But due to logistics and time, that is not always possible, and we may still be collecting this material. If you want to read the full text of an article we haven’t provided, copy the citation information. You can find most articles in medical libraries, or you can order articles online (for a fee), from services like PubMed , MedLine, MedScape, etc., or sometimes directly from the website of the journal.

  11. Many “salivary gland cancer” subject articles are written about a variety of cancers, which sometimes includes acinic cell carcinoma. You often have to go to the full text version to find the specific ACC results.
We DO encourage all visitors to this site to GET AS INFORMED AS POSSIBLE ABOUT THE DISEASE AND TREATMENT. That may mean reading overviews, or it may mean reading lots of medical articles. The choice is up to you. We have made both options available. We just want you to leave more informed and knowledgeable than when you arrived. And we hope that your visit here will result in better choices, better treatment for acinic cell carcinom patients, and ultimately a cure for the disease!

If you have any questions, email us!

Thanks for visiting!

Edgar Stroke

SCIENTIFIC TERMS EXPLAINED

Excerpt from:
“Alternative Medicine: What Works”
Adrian Fugh-Berman, M.D.
Copyright 1996
Odonian Press,
Tucson, Arizona

We have excerpted this section from Ms. Fugh-Berman’s book, as we found it to be a very clearly written and informative overview on this particular subject. The book cited is also a useful easy-to-read overview of alternative/complementary medicine and treatment, and we recommend reading it, if you are interested in that subject as well.

VIEW CITATION

We apologize. At the moment this link is unavailable. We hope to have it posted soon. Please check back.

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