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Lobular Breast Cancer: Let's share and support each other

Breast Cancer | Last Active: May 27 11:09am | Replies (370)

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@delormv

@amolson I too, have been diagnosed with atypical lobular hyperplasia (ALH) I had invasive DCIS a year prior to the new diagnosis of ALH so I already had a surgical oncologist. I guess monitoring and sometimes medication is recommended for ALH. My surgical oncologist recommended monitoring only for me since I am already on an aromatase inhibitor because of the prior cancer diagnosis. I wasn’t comfortable with this recommendation because I had read that surgical removal is recommended for ALH because there might be cancer “lurking” near the atypical cells. I asked for a second opinion from Dana Farber cancer institute and the doctors there concurred with monitoring and medication approach. So, I guess my advice for you is to follow through with seeing the oncologist and ask questions about treatment options. Write the questions and answers down. Bring a friend with you to also take notes. Do a bit of research about your diagnosis so you understand what your diagnosis means. If you’re not understanding what the doctor is saying, ask for clarification. If you’re not comfortable with the recommendations, seek a second opinion. I hope this helps and please keep asking questions…you are your best advocate!

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Replies to "@amolson I too, have been diagnosed with atypical lobular hyperplasia (ALH) I had invasive DCIS a..."

So the fact that you took your personal time to respond and give me some advice brought tears to my eyes as that is BEYOND kind of you. I sooooo appreciate your time and concern and especially your advice since it sounds like you have been going through some very scary issues yourself!! I know I have to do more research because no one is going to advocate for me better than me but it is good to hear from people like you who have been dealing with it. I think I am going to want to have the surgical removal and pathology to look at all the cells they remove as this look and see attitude concerns me. I watched my mother and father both die of cancer this last year within 6 months of each other and it grows sooooooo fast 🙁 But time will tell as I do more research, THANK YOU AGAIN for you time as it did help and I TRULY appreciate it. Now YOU take GOOD care of yourself and follow your own advice too!! NOTHING but prayers being sent your way and try to have HAPPY Holidays!!