I have LCIS, anyone else?

I completely agree and hope more women will open up about there experiences with LCIS and ADH. The closest Mayo Clinic that will see me is in Arizona. I live in South Carolina. I am not opposed to going, but feel I need to see if I can get more information with my doctors here. I would like to know hat even though I haven’t been diagnosed with Cancer, should I see an Oncologist? I am being checked every six months for the rest of my life by mammogram and MRI. The information can be confusing. Thank you for replying. I’m glad we can all be here for each other.

I was diagnosed with ALH in 2022, which was a year after having breast cancer in 2021, so I was already seeing an oncologist. I don’t believe I would have been seen by an oncologist otherwise since LCIS isn’t considered cancer, even though the word carcinoma is used. They should change the name. It feels like I’m a ticking time bomb, but I know that monitoring is the recommended treatment for it.

Welcome, @dlst. Allow me to bring @beachysol @lexalaska @timely into this discussion. They also have experience with pleomorphic LCIS (PLCIS).

DLST, have you decided in the meantime whether to have another lumpectomy plus radiation or a mastectomy?

Not yet, although I had a helpful conversation with the radiation oncologist last week. I am waiting for results of gene testing and a PETscan, and I hope to get a second opinion. I would love to hear what other people with PLCIS decided and why. Thanks!

Due to other health reasons, I decided to not take Tamixafen. I saw my breast surgeon last week and he says my alternative is to have a double mastectomy. Has this been a recommendation to anyone else?

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.

That's wonderful to hear that you've had no further issues!
May I ask for how long you did the watchful waiting scans? How many years, and still no further issues?
Alternating mammos with MRI's? Or something else?
Did you have any biopsies in all that time (if so, that I assume were clear)?

I'm personally worried about all the scans, every six months. And more biopsies. Much too anxiety producing for me.

I have PLCIS (pleomorphic LCIS). I would also like to know the answers to the questions lc1sp123 asked, if you have some time to reply. I just had my second lumpectomy. The first lumpectomy removed a 2mm tumor (invasive lobular cancer), but the margins were not clear, which is necessary for PLCIS. I will have 20 radiation therapies, but no chemo. Then five years of hormone-inhibiting drugs. I am told I will be followed up very carefully with some combination of MRI's and mammogram or ultra-sound.

Thanks for sharing your story.

I decided on a second mastectomy plus radiation. I talked to the radiation oncologist at the breast center associated with my hospital. He is extremely knowledgeable and approachable, and explained everything in great detail, answering all of my many questions (that I had typed out ahead of time). He emphasized that their equipment is state of the art, and I later found out from another doctor that he is internationally known. (We live in the San Francisco Bay area.) I feel lucky to have such a good doctor and such excellent facilities. Knowing all this, I thought I felt confident to go ahead with radiation therapy. I had been worried about it before.

It is true that it is a risk to go ahead without a mastectomy, but after analyzing all my concerns, I realized that they were all about the future, and what might happened 10 or 15 years down the road. I am 68. I decided to do what I wanted to do right now - I am still happily married to the love of my life, and I want to enjoy sex with two breasts (to be very frank). Also, in the future it is entirely possible that they will come up with new treatments that will be very effective. So I decided to go with what I want for now and not be so anxious about what might happen in the future. I know this decision might not be for everyone. I can be a bit of a (calculated) risk-taker. Some will prefer to just "get it over with" and not have to worry about all the follow-ups, which is very understandable. Hope this helps.

P.S. I also got a second opinion from a second surgeon. Before making my decision to get a second lumpectomy rather than a mastectomy I talked to my surgeon, an oncologist, the radiation oncologist, and a second breast surgeon. I went prepared with all the questions I could think of, typed up, and handed it to them. (I made a copy for myself, so I could make sure all my questions were answered, and I could make notes.) My husband went along so in case I missed anything, he could help me remember. I discussed the doctors' answers with him and with friends who have had breast cancer or were medical professionals. I talked to two women who had had mastectomies and two women who had had lumpectomies and one who had had radiation therapy. I read as much as I could on the topic. Basically I gave myself six weeks to make this decision (I asked the surgeon if I could wait, and he said it was fine). That took some of the pressure off. I know this may sound overwhelming to some, but it gave me the confidence that when I finally made the decision, I made the best one possible. Each person should think about how she best makes decisions, and go with what makes you feel most comfortable. If possible don't try to decide right away. Give yourself space. I went from "yes - mastectomy!" to "no, lumpectomy is the way to go" back to "mastectomy" and finally landed on lumpectomy. But by that time I was certain of my decision.