Connect
← Return to I have LCIS, anyone else?
Discussion
Comment receiving replies
I have LCIS in both breast. And Atypical ductal hyperplasia in my right. I had a lumpectomy in both and thankfully it all came back clear. I haven’t seen an oncologist and no one has recommended that to me. They are wanting me to start Tamoxifen in March. I am concerned with all the side affects. I will be having a mammogram and MRI once a year. I feel lost as to what I should do.
Replies to "I have LCIS in both breast. And Atypical ductal hyperplasia in my right. I had a..."
@nbrooks, keep in mind that not everyone experiences side effects or severe side effects from tamoxifen. One can get a distorted impression from discussions on a forum such as this one. It is the people who experience side effects who seek support to help them through treatment. The women who don't suffer side effects go on with life. You can always start treatment to see how you tolerate it.
Back in 2006 or 2010 when I started to get a lot of atypical ductal hyperplasia my surgeon brought up the option of Tamoxifen. I chose not to because of the risk of blood clots. I've so far been managed okay with every 3 yr MRI, annual mammo and every 6 months ultrasound for 2-3 years. I had lumpectomies in 2006, 2010, and 2018 for papilloma, ADH, sclerosing scar. But I'm now in my 2nd year of abnormal MRI and mammo results on both breasts heading to two biopsies. I've done A LOT of research the last week. Do you know if you have the pleomorphic type of LCIS? That carries a higher risk for development of cancer.
@nbrooks - I'm sorry that you are part of this group...not a group one chooses to be in, but glad that it is here for all of us for support. If you don't mind answering, but was your initial diagnosis LCIS, or was it an upgrade from a different initial diagnosis, like atypical lobular hyperplasia (ALH)? I have been diagnosed with ALH and was told that it will not turn into cancer, but that it is a marker for potential cancer that is lurking elsewhere. Thank you.
I have very similar
Opted out of tamoxifen after issues. Not sure taking all estrogen out if a great idea for me
Watchful waiting and careful followup seems ok for me.
No other issues in several years.
Connect
I was diagnosed in April 2023. I had surgery in May and Thank God was all clear. I am 60 and in Menopause so they recommended Raloxifene . I was on Bonita years ago and came off it because the side effects were awful. I have decided not to take Raloxifene. I am on schedule probably for the rest of my life MRI-6 months later Mammography and Ultra Sound. This was not an easy decision but for me it is the decision I am comfortable with. I have made a few minor life changes to hopefully help. Almost every article I read says a very few percentage 1-3 % of women who are diagnosed with LCIS ever come down with Breast Cancer. my doctor was supportive in my decision. If I continue to get diagnosed with LCIS I will have a double Mastectomy. I had the gene test and was all negative. I pray everyday and I will pray for you and your decision.