Has Anyone Else Been Diagnosed with Malignant Adenomyoepithelioma?

Hi Tammy. Just read your post. I haven't personally heard of it. I read up on some of it but it was very confusing. I hope you get some answers from your treatment team. ❤️

Hi Melani, thank you for this. Yes, very confusing! Had a lumpectomy and three lymph nodes removed September 12. The margins and lymph nodes all came back negative thank God! so basically, I am cancer free right now. However, with that one part being a certain type, could possibly go through the blood to somewhere else. So, Dr wants to do preventative chemo and then radiation. Just had 3rd chemo yesterday, go each week for 12 weeks. Doing pretty good. A little nauseous sometimes, have med for that. They said it’s good to move around. Don’t stay in one place all the time like bed! Ha! Trying to drink a lot of water and eating bland foods nothing spicy. So if this is all that it takes, then I’m ready to get all this behind me! And looking at getting a port put in next week prior to my next treatment. Ugh not excited about that! And you? You doing ok?

Oh yay, I'm so happy for you! (Well I mean that for having cancer you are having good outcomes). My situation is different (regarding the type of cancer I have) but it is good - here again good for having cancer, lol. I was diagnosed in July. BC in left breast ER/PR + HER2 -. Ki-67 was at 3%, so slow growing tumor. I think I am a stage 1. Genetic testing was negative. My oncotype test was good. Don't know what it all means but the score was very low. So chemotherapy is not recommended. I was going to do radiation, lumpectomy and then letrozole. But doctor said I qualify for a study. So I'm doing that instead. Tx is now one highly focused gamma pod radiation tx, then letrozole, then lumpectomy 8 to 12 months later. They wait that long to allow for the radiation to work. In between there is scheduled blood work to monitor effectiveness along with MRIs and I'm sure I'm forgetting other things. I do have to do two more biopsies that I'm not looking forward to. One is this Monday, then my radiation is 11/22 then I get another biopsy two weeks later. Letrozole starts right after my radiation. I've had my ups and downs but I know I am blessed and feel fortunate for this plan that is in place. Waiting for test results was almost the worst. I'm still not done with that part, the biopsies and blood work provide more information on effectiveness of the treatment. The hope of this study is to reduce the number of radiation TX and possibly eliminate any need for surgery (for certain types of cancer). If you are you up to it please post again. This cancer thing is weird. You have good and bad days. Don't want to be nosy just good to hear how you and others are doing

Good to hear from you and your teams plan laid out for you! Hope your last biopsy went well, knowing how anxious that is! What are the results? And your radiation starts Wednesday? Why do you have to keep getting more biopsies? Yes, we both are blessed, hard to fathom that what we are having to go through! I’m doing ok, thanks for asking. I got a bad upper respiratory virus that the dr cancelled one week of treatment. Got on antibiotics and have next (4th) treatment Wednesday. I hated adding another week on to my journey but have enjoyed being able to rest and get better having a week off! Let me know :)

Tamny, hope you are doing better this week. And hope your thanksgiving is fun but restful. You have your next treatment this Wednesday? I'll be thinking of you. I go in for my radiation treatment this Wednesday too. It's different than other radiation. I'm in a study. I get one high dose of radiation on and around the tumor. Then on letrozole. They monitor me with MRIs, blood work and biopsies. I'll do my lumpectomy in 8 to 12 months. I do two extra biopsies for the study, one before my treatment and one after. They use it for my progrrss before and after treatment. They also use the biopsies for research. Plan/ hope is that it will benefit others. So far the study is very promising

Thank you, so far so good this morning. Still cold drainage and some coughing. I will be thinking of you Wednesday as well. I’m in a study also for ACC radiation so we will see. It’s 3 weeks, 15 radiations, after chemo is done. what is the name of the tumor?

Tammy (and others here), a comfort for me in this cancer diagnosis is that I have gotten closer to God. I'm beginning to understand the benefits in suffering. I know I am fortunate though. I'm not going through close to what you and others are going through. I've been reading a book called The Power of Suffering by John MacArthur. It is helping me so much. Been slowly understanding what the peace of God feels like .

Tammy, oh my tumor is small. 1.6 mm. I think called DCIS? Stage 1 (a or b, I'm not sure). Hormone positive, HER2 negative. I think that means it is very treatable. The study I'm in hopes that in the future only one radiation treatment is needed and no surgery ( for stage 1 cancer). Wouldn't that be awesome?

Hi Melani! That is wonderful news! God a bless you! I will look into that book. Finished 5th treatment yesterday was a pretty good day! 1 stick on IV and blood!!!! That made me very happy! 7 more to go. I got this! I don’t like to wish my life away but I can’t wait for Thursdays to come and go! My hair on the hand is falling out more since this last week. Hopefully it will slow down as I’ve been told. I have or had very thick hair thank God! If you would ever like to talk let me know. Take care 💝

Yes, talking and sharing is so helpful! I don't blame you, I weeks want Thursdays over too. Glad you are doing better. The hair falling out really sucks though. Some ladies just cut it short, use the scarves, get wigs... I'm hoping and praying my hair loss won't be too bad. From what I read, the AIs we have to take can cause ( but not always) hair loss. Regardless, it will be fine for me. God helps.

Yes, let’s pray the hair tapers off! Take care of yourself ♥️

Morning Melani! Hope this finds you doing well 😁

Finding others with such a rare diagnosis can feel isolating, but connecting with this community is a great step toward finding support and shared experiences. While malignant adenomyoepithelioma is uncommon, there may be other members here who have faced similar rare breast cancer diagnoses and can offer valuable insights about navigating treatment and finding specialized care. Consider sharing more about your journey when you feel comfortable - your experience could help others who might be searching for answers too.