Latest News

ACCIC Website Updates –
Important Information About Diagnostics

June 14, 2005
We have just updated this website with information we have been gathering and researching over the past several months. This includes important new information regarding Diagnostics Tests for ACC patients, specifically several Radiology tests. Most importantly, new data has come to our attention indicating that standard plain film Chest X-Rays are not the best diagnostic method for screening/surveillance for lung metastases/lung tumors. Small or low grade tumors are routinely not noted on these studies. Most ACC cases are low grade and slow growing, so metastases to the lungs may not get discovered early using Chest X-Rays. We are now recommending Chest CT scans with fine cuts (or newer spiral CT scans) to screen for possible lung metastases. These may also be done as part of a Whole Body CT or Whole Body PET/CT exam, as long as the lungs are still viewed in the same detail as Chest CT alone.

Our second significant new recommendation has to do with Whole Body Surveillance/Screenings for possible new cancer sites/metastases. In the past we had been recommending Whole Body PETscans as an adequate (if not always reliable) full body screening test. It has come to our attention that small or low grade tumors (such as the more common ACC) are often not visualized on PETscans as well. They can still have a role in diagnostics, especially in conjunction with other tests. You can read more details on the updated pages.

The Whole Body screening/surveillance test that we are now suggesting may be more reliable is the Whole Body PETscan /CTscan combination. This gives the benefits of the detailed views of CTscans combined with the ability of PETscans to image sites of active cancer metabolism. This new combination method allows radiologists to view PETscan and CTscan images perfectly aligned. And the combination technology has the ability to visualize much smaller tumors. This exam is however not widely available yet.

There are many more details on the updated pages, and if you are a patient (or physician treating ACC) we recommend reading the material. There are also updates to other subjects.

These are the updated or brand new pages:
“Diagnostics / Follow-Ups To Do” - Detailed recommendations on diagnostics for ACC patients.
“Diagnostics /Follow-Ups To Do: Summary” – Short Overview List of recommendations.
“Patient To Do List” – General advice and treatment philosophies for ACC patients, on various subjects.
“Diagnostics and Follow-Ups” – At the moment this page has links to the pages mentioned above. In the future it will also include literature about diagnostics specifically relevant to ACC patients, as well as detailed information and links regarding specific tests, patient instructions, etc. (The page is not completed yet.)

August 25, 2003
We have just posted data released from the The Cancer Genome Anatomy Project (CGAP), a program run by the National Cancer Institute / National Institute of Health (USA). The goal of the CGAP is to determine the gene expression profiles of normal, precancerous, and cancer cells, leading eventually to improved detection, diagnosis, and treatment for the patient. By collaborating with scientists worldwide, such as the Ludwig Institute for Cancer Research and Lund University, CGAP seeks to increase its scientific expertise and expand its databases for the benefit of all cancer researchers.

The specific data on Acinic Cell Carcinoma that has been posted on the CGAP website is within the "Mitelman Database of Chromosome Aberrations in Cancer", and more specifically in the section on "Recurrent Chromosome Aberrations in Cancer". To view the data on the CGAP website requires going to a number of different pages. Also, individual pages repeat the same data in different formats. We have compiled the data in a more consolidated way in several locations on this website. Currently you may view the data directly on one of the ACC Research pages. CLICK HERE to go there directly.

You may want to visit the CGAP website for more detailed information on what this data means, and other research they are doing, as well as (hopefully) additions to the ACC research. The Mitleman database was last updated on August 20, 2003 and is updated quarterly in February, May, August, and November.

Acinic Cell Carcinoma Tissue Bank Update -
New Formats To Be Accepted (and we could use your help)

August 15, 2003
The Wake Forest University Tissue Bank has been open for donations since April 2002. Unfortunately, we at ACCIC were informed yesterday that they have only had ONE tissue donation to date. This is not good news. We had hoped that by this point there might be enough Acinic Cell Carcinoma tissue collected to begin some research. Speaking from his office in North Carolina, Dr.W. Fred McGuirt (Chairman of the Dept of Otolaryngology) surmised that part of the problem is likely that ACC cases are not getting diagnosed until after pathogy reports are generated, usually several days after a surgical procedure. By this time, it is too late to collect FRESH tissue, as the tissue samples have usually been fixed in formalin or put into paraffin (wax) blocks or slides by then. Up until now, the only tissue accepted at Wake Forest was fresh tissue, flash-frozen in liquid nitrogen immediately following surgery.

After communication yesterday and today between Edgar Stroke at ACCIC and Dr. McGuirt, the decision was made today by Wake Forest to open up tissue donations to other storage formats besides "flash frozen". Wake Forest will now be accepting formalin fixed and paraffin embedded samples. While this type of tissue is not useable for some kinds of research, it can be utilized for others. And this type of tissue is much more easily accessible than flash-frozen/fresh. Almost all ACC patients have tissue of this kind stored indefinitely at hospitals where they have had procedures. We are in the process of working out the details of new forms and instructions. But hopefully next week we will be able to post details and forms for these submissions on this website. At that point we urge website visitors to strongly consider donating tissue for this worthy cause. Once enough tissue is collected, Wake Forest will make this tissue available for research. Or they may initiate the research themselves. This would be the FIRST research of this kind performed on Acinic Cell Carcinoma.

Prior to our posting of the forms, if you wish to make this kind of donation, you can let us know by giving us your email address. You can do this on the Tissue Banks page. We will let you know when the forms are posted. We will not use your email address for other purposes. Or you can check back with us next week.

We at ACCIC are also involved in discussions with Dr. McGuirt/Wake Forest about ways to increase tissue donations of fresh (flash frozen) tissue. One critical aspect is identifying ACC cases PRIOR to surgical procedures. If patients have their suspicious masses needle-biopsied prior to surgery, more cases would have their histology (cancer type) determined in advance. This would have the added benefit of the patient and physicians making more informed choices with regard to treatment decisions. For tissue donating, this would have the benefit of being able to plan for the liquid nitrogen freezing and packing procedure in advance. This method could be utilized if the word gets out to physicians to DO needle biopsies for more undiagnosed masses, especially parotid area masses (and then to prepare for sending flash-frozen samples of ACC, if that is the pathology result). We are discussing ways of getting the word out about this. If you are reading this, and are a physician or health care worker, please help us to spread the information. (Or if an ACC patient, tell your physician about this.) The flash-frozen tissue is more useful for certain kinds of research. So we still need these donations, despite the additional formats accepted.

Another likely reason for lack of tissue donation to date is simply that most physicians do not know about the tissue bank at all. We at ACCIC, in conjunction with Wake Forest, will continue to try and get the word out in various ways. But we have limited resources. So we are also hoping that YOU THE READER can help us SPREAD THE WORD! (Thanks)

Rare Diseases Legislation Passed by U.S. Congress

October, 2002
On October 17th, both H.R 4013 (the Rare Diseases Act) and H.R. 4014 (the Rare Diseases Orphan Product Development Act) were approved by the Senate. Earlier they had been approved by the House of Representatives. The bills will now be sent to President Bush for his signature. Both of these bills should result in increases of rare disease research, supported by the National Institutes of Health (NIH) and the U.S. Food and Drug Administration (FDA). Our hope at ACCIC is that this will also lead to increased funding for research on Acinic Cell Carcinoma.

Acinic Cell Website Undergoes Major Facelift and Expansion

September, 2002
For those of you that have visited before, you were probably surprised to see that the aciniccell.org website has undergone quite a change recently. We have been working day and night since the beginning of June, to improve all aspects of this website. So welcome to the new "Acinic Cell Carcinoma Information Center"! We hope that you like what you see, and that the information you find here is helpful. We are not quite finished building all the pages yet, but we decided it was better to post something, rather than nothing, while we continue to work. We will continue to revise and expand the basics of the site over the next few months. And after that there will be ongoing updates. So check back periodically to see what's new. And if you have any suggestions or comments, feel free to email us. I also want to take this moment to thank my website designers, Bob Heller (of HellerDesign.com), and Daniel Addiss (of ReadyConnect.net) for all their hard (and donated) work.

Edgar Stroke

New Data Indicates a Type of Breast Cancer May be Identical to Acinic Cell Carcinoma

June, 2002
In the March 2002 issue of "Histopathology", an article was published entitled "Secretory carcinoma of the breast: a tumour analogous to salivary gland acinic cell carcinoma?" The article was written by a group at the Department of Pathology, University of Tokushima, Japan. They write "Acinic cell-like breast carcinoma is a newly recognized entity, and few acinic cell-like breast carcinoma cases have been reported." They go on to report on three cases of Secretory Breast Carcinoma with acinic cell differentiation, and discuss the similarities between the two diseases. Their conclusion reads, "These cases were typical of secretory breast carcinoma, and were clinically, histologically and immunohistochemically analogous to acinic cell carcinoma of the salivary gland. We emphasize that secretory breast carcinoma and acinic cell carcinoma of the salivary gland may be identical lesions."

It has been noted or suspected for some time that there are some similarities between certain forms of breast cancer and acinic cell carcinoma. This new data goes a step further. One reason that this information may prove valuable is a financial one. While there is at this point little or NO money spent on acinic cell carcinoma research (that we know about at this time), because of the rarity of the disease... Breast Cancer is one of the most researched (and funded) cancers on the planet, due to its' much greater numbers of patients. While secretory breast cancer is quite rare, the fact that it IS a breast cancer may lead to research that can be applicable to acinic cell carcinoma patients.

You can read the full abstract of this article if you visit our
ACC Literature/Articles/Information page.

Rare Disease Legislation and Funding: You can help!

Rare Diseases Act of 2001 (S. 1379)
Rare Diseases Act of 2002 (H.R. 4013)
Rare Diseases Orphan Product Development Act of 2002 (H.R. 4014)

June 2002
The United States Senate and House of Representatives are considering bills that would provide crucial funding for rare-disease research and the development of new diagnostics and treatments. This could be very important for acinic cell carcinoma patients, as right now there is NO clinical or laboratory research being funded for this disease. These bills will likely come under review soon, and your voice could be very helpful in getting them enacted. Visit the page listed below to learn more about these bills (or read the bills themselves) and to consider encouraging your representatives to support this legislation.

National Organization of Rare Disorders (NORD): http://www.rarediseases.org/

"By the way, we just got Acinic Cell Carcinoma added to the "Office of Rare Diseases" list at the National Institutes of Health (which might make ACC research eligible for funding like this in the future)."

Acinic Cell Carcinoma Tissue Bank Opens!

April 2002
The Wake Forest University Comprehensive Cancer Center in Winston-Salem, North Carolina has created and opened a Tissue Bank for Acinic Cell Carcinoma. THIS IS A MAJOR BREAKTHROUGH for research on this rare cancer. This has never happened before. This could be the beginning of a road which leads to a cure for this disease. And YOU can be a part of it!
Specifically, this is a bank of frozen ACC tissue that is intended to be used for basic research. Once enough tissue is collected, it will be made available to researchers. They will need to submit a proposal to a Tissue Committee at Wake Forest. The creation and operation of this tissue bank is being funded by a private donation. The Wake Forest University Cancer Center also plans the creation of a related database and website as a second component of this activity. There is also hope that once there is enough tissue in the bank, Wake Forest itself may seek more funding to initiate their own research. So we now have a serious academic institution focusing on acinic cell carcinoma research on several fronts.

We at aciniccell.org STRONGLY encourage all visitors to this website, with available (or potentially available) tissue to DONATE TISSUE TO THIS BANK. This tissue must be flash frozen in liquid nitrogen, placed in a cryo vial and sent to Wake Forest University tissue bank. This kind of tissue is removed during surgeries or biopsies. So if you are about to undergo(or perform) surgery, please consider donating a portion of your tissue to this valuable cause. Some of you may already have cryo-frozen tissuein storage. Please inquire if this is the case.

At the moment, Wake Forest University is only accepting frozen tissue. However, in the future, they may be interested in other forms of acinic cell carcinoma tissue (slides, paraffin blocks, etc.) , which may already be in storage from previous surgeries and biopsies.

To learn more about this valuable program, or to get forms related to tissue donation, visit the Research/Tissue Bank page.

February, 2002
The first ever international congress on Salivary Gland Diseases was held this year from January 27- January 30, 2002 in Geneva Switzerland. It was sponsored by the University of Geneva.

You can visit the official Congress website at:
http://www.symporg.ch/conferences/2002/sgd/

The sponsors described the conference in advance as follows:

"The First International Congress on Salivary Gland Diseases intends to gather for the first time experts in different scientific disciplines, in order to improve our understanding of the normal functioning of the salivary glands as well as of the diagnosis and treatment of salivary gland diseases. We believe that the symbiotic contributions of clinicians, surgeons, pathologists, immunologists, radiologists, dentists, and researchers from different basic science fields will be stimulating and highly productive.

Clinicians will have the opportunity to update their knowledge with recent developments in the mechanisms of salivary secretion and the immunology of salivary diseases. The controversies in the diagnosis and treatment of benign and malignant salivary tumors will be debated in lectures and round tables.

Recent technological advances in imaging, diagnostic and therapeutic procedures of salivary ductal diseases will be reviewed and a practical hands-on course on sialendoscopic techniques will follow the main meeting."

We look forward to any results from this conference that may be applicable to Acinic Cell Carcinoma research and treatment. We will of course keep you posted. We also hope that there will be another conference next year.

You can read more details about the conference on our Research page, under the
ACC Research & Tissue Banks heading.