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ADH.with acroprine and refusing lumpectomy surgury

Antoinette2017 Member Posts: 3

This year I learned from my biopsy that I have benign breast results AdH with acroprine metaplasma. And I'm not going through with the hook wire surgury. Has anyone refused to do surgury? They say it's benign. I dont want to go thru surgury when they say it's not even cancer yet. And I don't want to have to take tomoxi medications and be sick with all side effects. Is there a chance that it might not ever be cancer? And to go through all the surgeries and medication for nothing?


  • moderators
    moderators Posts: 7,889

    Hi Antoinette-

    We certainly understand not wanting to undergo unnecessary procedures or treatments for a condition that isn't cancer. However, research shows that women with ADH have a higher than average risk of developing breast cancer, which is why doctors suggest removing the affected area. How much higher depends on other risk factors and your family history, but we definitely suggest talking about your risk with your doctor. There is certainly a chance that it won't develop into breast cancer, but your increased risk is something to consider.

    The Mods

  • Antoinette2017
    Antoinette2017 Member Posts: 3

    I do have an Aunt who died of brain cancer and from what I hear it did travel through her body. But I have so many aunts to many to count. That have never had breast cancer or any kind of cancer. Beside the one Aunt. So I think I should go for a mammogram in 6 months or so. My doctor didn't have time to explain to me what's going on with my breast. All they did was send my my appt instruction. And instructions on what to do if I die while they perform surgury. A hook wire surgury?lumpectomy?so I say no to it all. I stick with check ups every six months.

  • bounce
    bounce Member Posts: 215

    May I suggest that you find a doctor who does have the time to explain your condition to you and who is prepared to discuss different options. A doctor who doesn't have time to explain is not a good doctor.

    It is fine to make decisions as long as you have all the information.

  • melissadallas
    melissadallas Member Posts: 929

    Antoinette, the problem with not having the excision of the area with ADH is that in about 20% of the surgical excisions they DO find cancer in the area with ADH, either invasive or DCIS. Ideally you would know now, while it is possibly DCIS before it became invasive cancer & possibly spread.

    About 90% of women diagnosed with breast cancer don't have family history, so that is not a good gauge for the necessity

  • Sourisou
    Sourisou Member Posts: 4

    Hello Antoinette, MelissaDallas is right - I'm one of the 20%. I was first diagnosed with atypia and was "upgraded" to full DCIS after lumpectomy.

    There is a great thread in the High risk forum called "ADH club": It will give you more general infos on the condition. I also agree with Bounce that you should find a doctor that takes the time to explain your results clearly so you can make the best decision for yourself. Why did you have a biopsy BTW? Did you have a lump or was it visible on mammo/ultrasound/MRI? My DCIS was occult everywhere except MRI.

  • Antoinette2017
    Antoinette2017 Member Posts: 3

    Hi I know it has been 5 years since I last posted this and I just found this again. Well I didn't go thru with the surgery and I'm still alive. For now. I did have a mammogram recently but they said they didn't see anything. I think obama care is a joke. I tried to tell them that what I was diagnosed with back in 2017 and they really didn't look any further. And originally to answer you question about if I felt a lump. No I did not feel anything. The biospy said that I had microcalcifacations so they wouldnt really hurt me right? Anyhow I'm crossing my fingers still because wouldnt they are least see a lump in the mammogram that I just had. If it was supposed to get worse by 5 years..they would of been able to at least see growth of the calicifications? Or maybe I won't get cancer. Still crossing my fingers

  • cookie54
    cookie54 Member Posts: 655

    Glad to hear you are doing well and pray you continue to do so! I also want to say not to let your guard down and be vigilant with your follow up. I was diagnosed with ADH and had it removed but still went on to develop TNBC 9 years later! Yes there are women who go on to live healthy lives but there are some that do not. So celebrate that your are well but stay on top of this. Best wishes.