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Forum Name: Breast Cancer

Question: adenoid cystic carcinoma of the breast


 breastpain1 - Tue Jul 24, 2007 2:14 pm

I hear I am about 151 of anyone who has ever been diagnosed with this. Does anyone have any information about this diagnosis and prognosis? I still need to have a resection done as my tumor went all the way to my margins. I see the oncologist tomorrow and breast specialist next week. I would like any information anyone has! I am 44 years old and have had a benign schwanomma removed from my carotid artery six years ago.
 Dr. Chan Lowe - Tue Jul 31, 2007 3:59 pm

User avatar Hello Breastpain1,

Normally I try not to refer people to different websites because it is difficult to tell if the site is accurate, etc.

In this case, there is a website that I think will give you lots of good information. I suspect you will get better information there than I can give you since I, also, am not particularly familiar with this form of cancer.

http://www.rare-cancer.org/adenoid-cystic-carcinoma/
In particular the FAQ section addresses most of the questions you've asked.

Please feel free to come back and visit our site again if you have any questions we may be able to answer.

Best wishes.
 breastpain1 - Fri Aug 03, 2007 8:42 am

I have visited the site and it truly seems to be the only site out there with any ideas about this cancer. I have found medical articles that have also been helpful. I went to tumor board with 40 plus doctors last week and only one had ever personally seen it. While that is not at all reassuring, at least their assessment of treatment matched what I have read. (lumpectomy with radiation, will check sentinel node disection just in case but they don't expect anything) I will say that I no longer believe in odds, as this cancer is less than 0.1 percent of breast cancers--in my book it was 100 percent! Preparing for surgery this Tuesday...if there are any complications or it has spread to my nodes I will probably head to some national cancer institutes that have dealt with it at least a few times. Thanks for this site again...I hope my info helps someone too.
 breastpain1 - Wed Aug 22, 2007 6:04 pm

Just updating as I hope my info may help someone down the road. My lumpectomy was not successful, as clear margins were not obtained. The tumor is estimated at 6.1 cm, and although nothing seems to be in the chest wall tissue that was obtained, the tumor did spread that far. So, mastectomy in a few weeks. Pathology report did say that squamous metaplasia was present, but from what I have read, that is a benign condition. At least I will have no nodes dissections and will get reconstruction the same time. AS of now, no chemo as again, this cancer does not respond to chemo. RAdiation is equally questionable but i predict if my doc suspects anything she will order it anyway after the mastectomy.
 Dr. Chan Lowe - Wed Aug 22, 2007 6:54 pm

User avatar Thanks for the update. I hope all goes well for you.

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