Complex ADH with greater chance of surgical upgrade ANYONE?!?!
So my story has been long and drawn out and I just dont know what to think or do.
2 years ago, found a lump. Dx mammo/us determine "mildly irregular anechoic cyst". Lump never leaves. No follow up other than annual well womens visit. 7 months ago, nipple discharge near lump. Go see OBGYN and he blows it off as hormonal and that i will just live with it the rest of my life, but I push for US. Shows dilated ducts.
Keeps happening and hubs says i need to get it checked out. So I go in September. Then I realize I have a strong family history and need genetic testing. She also.recommended contrast MRI. MRI shows "segmental NME" which indicates DCIS but more imaging needed to verify so BiRads 0. Ultrasound and mammo followed by biopsy and diagnosis is "ADH with papillary changes." Report states ductules had papillary and micropapillary architecture with one ductule containing mucin debris." Genetics come back and my myriad risk score shows me at 27% risk and that was before having had a biopsy and ADH diagnosis. Surgeons PA tells me my case is now complex and there is a higher risk the biopsy missed cancer but would not quanitfy what that meant. Just said "you need to tall to the surgeon." But then schedules me out 3.5 weeks. So here I am, with every turn showing worse and worse possibilities but no definitive answers. Because of the room amd gloom she gave me with my particular type of ADH I decided to go to MD anderson for a second opinion. I could not get tin there (due to my insurance) any sooner than my other appointment. I am ready for answers and what exactly is going on and what will potentially happen.
Uggggghhh!!!!!!!!!!
Comments
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I'm so sorry you're dealing with this! The waiting is really the worst. I have ADH and had to wait a long time to talk to a surgeon too. I ended up having a surgical biopsy to make sure they didn't miss any cancer. I hope you're doing ok in the meantime. Sending love
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The waiting is dreadful but please know that you are not compromising your health by waiting. Whatever it turns out to be, the reality is that it’s not an emergency, even if it feels that way at the moment. I wouldn’t say the possibilities are getting worse and worse. What I would say is that various testing modalities sometimes reveal different things, some of significance, some not, but because what they reveal is not always clear, additional views and assessments may be needed. This doesn’t indicate something “bad” but is more illustrative of the fact that breasts can be very busy and there is simply not one cut and dried test/assessment that identifies every breast condition. Breast conditions, including breast cancer, cysts, ADH, etc., are not always quick and easy to identify but waiting will not compromise your health. Take care
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Just to update, dr told me it is malignant and the biopsy missed the cancer. I am having a mri guided biopsy thos week for a definitive diagnosis.
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Going to leave another update here if anyone is following. MDA requested a new MRI and wanted to do MRI guided biopsy following the scan. Well low and behold, my left breast mass was a diffuse 10 cm as we were already aware of, but my right breast had a 2 cm NME as well. They biopsied both breasts. Left is DCIS with mucocele lesion grade 3 ER/PR+, HER2- and right is DCIS and IDC grade 3 triple negative. So now i go back wednesday for medical and surgical oncology. Im shocked, I'm scared, I'm angry, I'm ok. No ADH to be found. Only two different types of cancer, both aggressive, both significant in their own messed up ways.
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I’m sorry to hear your results @lg2009! That’s a lot to absorb. I had been following your posts here. I know it’s a crazy whirlwind of emotions but I like your “I’m ok”.
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