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I was first diagnosed in Feb 2015 with Invasive Ductal Carcinmoa and had a lumpectomy and sentinel node removed. After surgery i was told it is Adenoid Cystic Carcinoma and that only .1% of breast cancer is of this type. I start radiation on 4-13-15 for 6 weeks. I was told I won't have to have chemo or and medications. If you have/had this please respond. My oncologist and radiation dr. have a combined 48 years in the field and have never had a patient with this type of cancer. I am trying… read more
Go to Meet Others and you should be able to find someone if there is someone else. That rare, maybe not. My surgeon has only dealt with one person besides me 30 years that has the sll/cll.
@A MyBCTeam Member and @A MyBCTeam Member thank you for your responses. I have never used this site before and not even sure how to do everything. Is there a way I can continue to look for someone with the same type of cancer as mine? Maybe the only way is when I first posted and you two kind people responded. I thought maybe there was a place to type in the type of cancer and find others with it. I thank you for 1st responding and any other help you can give me. Have a blessed day.
On the left breast I did have musicinous cancer which too is a rare cancer. It was stage 1. Surgery is enough.
I wish I could help with that, but I can't. I can tell you that if they are only recommending radiation, no chemo, and no follow up meds, it must be one of the less aggressive ones. I can also share your frustration about a rare type of cancer. My lymph nodes had no breast cancer, but they found sll/cll, which is fairly rare. That is small lymphocytic lymphoma/chronic lymphocytic leukemia. It's slow growing and sometimes doesn't get treated for many years. There's a lot of info online that is vague and barely helpful. It is frustrating to try to find accurate info about an uncommon disease.
@A MyBCTeam Member. They are going well. My lymphoma is dormant for now, and may stay that way. Monday, I will have my final (hopefully) surgery concerning breast cancer. I started with a lumpectomy and radiation, which left me with 2 very distinct size breasts. Monday, the nontreated one will be reduced to match. I am excited to get it done before summer gets here. I have gotten away with a sweater over my tshirts to hide it all winter, but that won't get it in the summer.
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