CancerCompass message board discussion started by Laura S. on 9/8/2001 http://www.cancercompass.com/message-board/message/all,422,0.htm Wed, 03 Dec 2008 00:00:00 GMT Wed, 03 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ A surgeon just removed a tumor in my breast that was diagnosed as Adenoid Cystic Carcinoma, which is apparently rare when located in the breast. I am just beginning to research this, and would appreciate any information (including from doctors who know about this). Thank you. Laura Laura S. Sat, 08 Sep 2001 00:00:00 GMT Dear Laura, You are right about adenoid cystic carcinoma of the breast; it is rare (accounts for less than .1% of all breast cancers). There are few chemotherapy trials for adenoid cystic carcinoma because it is so uncommon; however, chemotherapy is usually started if metastatic (spreading) disease is present. The most common site of distant disease in the lung, and this can occur years after removal of the primary tumor. In general, prognosis is favorable as long as there is complete tumor removal with uninvolved margins or lymph involvement. It will be particularly important to support your immune system and protect your body from free radical damage. A guided nutrition program can help you accomplish this. For more information on how dietary changes and vitamin supplements can help you, please call Cancer Resource Center, 800 940-2822. To your good health, Kim Dalzell, PhD, RD, LD Program Director, Holistic Nutrition Services Cancer Resource Center Cancercompass Thu, 13 Sep 2001 00:00:00 GMT Laura,I see your message dated 2001...6 years ago.  I was just diagnosed last fall with the same cancer, have had surgeries and radiation.  Since there is so little information out there for us, I wonder how you are doing today?Your input is invaluable.  Thank you.Rita Rital Sat, 19 May 2007 00:00:00 GMT Hi Rita,I am a 5 yr surivor of this cancer also.  I am doing great.with no problems. I did chemo radition and take tamoxifenI have 6 more months on the tamoxifen, and down to yearly visits.Best of luck to you.Take Care Karin Klo2002 Thu, 26 Jul 2007 00:00:00 GMT Hi Laura,I have just found this forum. I was also diagnosed with this 2 years ago. There is a forum specific to rare cancers and includes a very informative group on this particular type of breast cancer. www.rarecancer.org will get you to it.As you may know by now, this form of cancer in the breast is much less agressive than other types of breast cancer or Adenoid Cystic Cancer elsewhere in the body.Trust you are still doing ok. AusRos Tue, 28 Aug 2007 00:00:00 GMT  On 8/28/2007 AusRos wrote:Hi Laura,I have just found this forum. I was also diagnosed with this 2 years ago. There is a forum specific to rare cancers and includes a very informative group on this particular type of breast cancer. www.rarecancer.org will get you to it.As you may know by now, this form of cancer in the breast is much less agressive than other types of breast cancer or Adenoid Cystic Cancer elsewhere in the body.Trust you are still doing ok.  ruthlillian Sat, 29 Dec 2007 00:00:00 GMT Had surgery last month to remove ACC from breast. My nodes were negative and my margins were clear. Radiation is being considered but not a certainty.No other treatment is being considered or recommended. I would like to know what others have experienced in similar situations.Many thanks. ruthlillian Sat, 29 Dec 2007 00:00:00 GMT hi all--just checking in in case new people visit here.  I was diagnosed in July 2007 and had a simple mastectomy in September.  i had a very large tumor (6.1 cm) but they say they got clean margins.  I pray they did!  No chemo, no radiation.  Just this passed week I had my gel implant placed so we have come a long way.I will see my oncologist in March after a chest xray and mammo.  that's all the treatment I am receiving.  ACC is strange but I guess in this case that is a good thing.Molly    brawleymom Sun, 10 Feb 2008 00:00:00 GMT To you in response to your comment on the breast cancer on your body, I am truly sorry for your terms.  So you do know, I have been marked with the ACC in the past within my throat.  I huge cancerios touma that bairly blocked my throut.  I was only 30 years old and they did surgery to remove part of my throut.  I then received radiation afterward.  It is noe 13 yraes later and I was again reunited with the old doctors.  The cancer has relocated both in my Liver and my right lung.  The doctors 1st releaved me at 43 years old of the growth in my Liver.  Major issues happened to me.  There was a clinical mishap that the Cheif Surgeon of the Boston hospital I was at proformed.  I had a surgical mishap in the surgery and could not speak - my right side was messed up. This was on April 8th, 2008. It is now October of the same year and I have inadvertantly regained my strength.  In addition, because of surgery mishaps, they wen't back in a second time in June and did my surgery again.  I am very lucky to still be here with real new thoughts and prayers.  I still will have to go on for more surgery on the lungs, but - AS ANY of us know. My life is better now and I still have plenty of love and pure addiration for my husband Steve who has never, ever let me down.  Please keep your sense of humor and your peace of mind!  Life becomes better! CZbelieves Fri, 14 Nov 2008 00:00:00 GMT I was diagnosed October 17, 1997 and had tumor removed 4 days later.  My nodes were negative, margins clear and  33 radiation treatments later.  Have followed up religiously and never had any more problems.  Good luck to you!On 12/29/2007 ruthlillian wrote:Had surgery last month to remove ACC from breast. My nodes were negative and my margins were clear. Radiation is being considered but not a certainty.No other treatment is being considered or recommended. I would like to know what others have experienced in similar situations.Many thanks.  accsurvivor Tue, 02 Dec 2008 00:00:00 GMT