just diagnosed DCIS / LCIS

Good luck with the surgery.

I would expect that you won't know if the final diagnosis on the left will be pure Stage 0 DCIS until after the pathology report is in, which is usually several days after the surgery. Similarly you won't know if the right remains ADH and LCIS until several days after surgery. So your plan would be to go back for a second surgery to have the right breast mastectomy if the results are not favorable?

"She said the survival rate for either doing BMX or right lumpectomy plus tamoxifen is the same for me."

Yes, there are studies that have found this to be the case. But under the covers of the numbers are some important differences.

After a BMX, your risk to develop breast cancer is 1%-2%. After an excisional biopsy/lumpectomy, your risk will be significantly higher (see earlier post from MelissaDallas; in your discussion with your surgeon, as suggested did you ask about your risk level to develop breast cancer if the excisional biopsy comes back with no cancer?). Tamoxifen can cut this risk by as much as 60%, but if you are starting with a risk of 25% or 30%, that still leaves you with a higher risk to develop cancer after a lumpectomy than after a BMX. I believe (but am not certain) that about 1/2 of this remaining risk will be for the development of DCIS, and 1/2 will be for the development of invasive cancer, either ILC (which can be difficult to detect) or IDC.

Since the risk to develop cancer is higher under the lumpectomy option, the way that the mortality risks between these two surgical options come in line is through the treatment of the cancer. It might just be surgery and Tamoxifen or an AI, or it might include chemo, Herceptin (if HER2+) or radiation. I'm totally guessing now, but I'd speculate that there is maybe a 5% greater risk of needing these types of treatments under the lumpectomy option than the MX option.

That 5% risk is small and might not impact your decision, given that you want to take Tamoxifen, and you won't be prescribed Tamoxifen after a BMX (because the risks outweigh the benefits, to my earlier post) but it would certainly be prescribed if you have the excisional biopsy only on the LCIS/ADH side. But if a 5% higher chance of needing treatments like chemo might change your decision, you need to talk to your surgeon again. If she only talked about survival rates, you need to ask about cancer rates - the risk that you might develop invasive cancer under each surgical option.

There is no right or wrong answer. Doctors tend to focus more on the final result, which in this case is the survival rate, which is approx. the same for both options. Patients usually look more broadly at both options and consider what's involved in getting to that survival rate. There is also a short-term vs. long-term perspective. Do you do something in the short term to avoid something that might, or might not, happen? Some people say yes, some people say no.

As for the benefit from Tamoxifen after the MX on the DCIS side (negligible if you have clear surgical margins) and your concerns about lack of screening after a BMX (not an issue), read my replies in earlier posts.

Ah, those figures are the risk to develop cancer, not the mortality rate - the numbers are much too to high be mortality rates.

The figures may be a bit low given that you have both LCIS and now have a history of breast cancer with your diagnosis of DCIS, but they aren't out of line. Your doctor may just be assuming risk at the lower end of the range. At 0.77% per year, your cancer risk from now to age 85 would be 28%.

With Tamoxifen, it would not necessarily drop to 14% - that depends on how long you take Tamoxifen (or shift to an AI). Tamoxifen reduces your risk while you are taking it, and for quite a few years afterwards, but at some point the benefit will wear off. So 5 years of Tamox wouldn't likely reduce your risk by 50% over 37 years (to age 85). Same with 10 years on Tamox and/or an AI - you might get reduced risk for 20 years (but probably not at the 50% reduction rate the whole time) but not likely for 37 years.

Just another fly in the ointment.

Since you are uncertain, the least risk short term decision is to have the UMX and excisional biopsy. After that you will have more information about your diagnosis, and you will know a whole lot more about mastectomy surgery and recovery. You can then choose to have the second MX, or not. You can't change your mind after a MX, but you can change your mind after a lumpectomy. So if you are struggling with the decision and your surgery date is approaching, it seems to make sense to go with the option that leaves you with options.

I am back for a second time at breastcancer.org. Fifteen years ago I had IDC, stage 2A in my left breast and my treatment was 2 lumpectomies, radiation and chemo and hormone therapy. I have been getting my mammograms yearly since and the last thing I expected was a new cancer dx. But the beast is back. This time, its DCIS in the other breast. I'm scheduled for a partial mastectomy on Friday. According to the mamo, mri and biopsy they don't think it is very big, about 2 cm. The surgeon did not suggest a mastectomy but just remove the smaller area. She even told me about studies where they don't treat DCIS at all. But she did warn me that she may find something worse when she gets in there. I'm 70 years old. I'm not ready to go through all this again. Reading through some of these posts, I don't know what to think. Should I get a mastectomy? I'm not really ready for that. When they gave me the dx I was just happy I didn't need to go through chemo again, but it looks like I have a whole new set of things to worry about. Things I don't understand. I guess I want this out of my body and I'll worry about the rest later. I have an appointment for genetic counseling next week. How do you know you are making the right decisions? This is what I got so far.

A. Right breast stereotactic biopsy calcifications inferior medial:

Ductal carcinoma in situ, intermediate grade solid and
cribriform types, measuring 4 millimeters in greatest dimension
on the biopsy cores, with necrosis and tumor-associated
microcalcifications.

Ductal carcinoma in situ.
Grade: Intermediate Grade.
Tumor Size: at least 4 millimeters (this limited core sample may
not be reflective of the actual tumor size).
Microcalcifications: Present.
Prognostic Studies: Please see future addenda.

ANTIBODY RESULTS
1. ER: Positive, 95%, strong.
2. PR: Positive, 65%, moderate.

Everythingwillbefine, as a general rule I prefer to not share my personal experiences. This is simply because my reasoning for my choices is based on what's important to me and how I think about risk, which is not necessarily how anyone else thinks. Additionally, how everything has gone with me and how I feel about my choices after the fact is unique to me and guaranteed to not to be the same for you or anyone else.

Personal anecdotes are interesting and there are situations where they may provide helpful information (dealing with side effects, for example) but the one thing I absolutely never want to do is influence someone else's decision, and for that reason I tend to not share my experiences when someone is having a tough time deciding what to do for themselves. I don't want my experience to influence your decision.

To make the best decision for yourself, you need to understand the facts of your situation and the pros & cons of each of the choices. Your first source for that information should be your doctors. To supplement that, and to assist you in your discussions with your doctors, I have tried to provide as much fact-based info as I can, both from a general standpoint and specific to what you currently know about your diagnosis. Everything you are asking about now has either been answered in my previous posts, or are questions that no else can or should answer for you.

Go back and read all the answers already provided, by me and others, in this thread and your previous thread. Then decide what is best for you.

Good luck with your surgery next week, whatever you decide!

This this is my experience.

I was diagnosed with dcis on my left breast back in February. My right breast was high risk so the radiologist did a biopsy and it turns out I had radial scars.

From the beginning, I knew I was going to get a double mastectomy. my first breast surgeon agreed with a mastectomy on the left breast but not on the right breast. Ultimately, she agreed on the bilateral.

For insurance reasons I had to change breast surgeons. That breast surgeon preferred I have a lumpectomy on both sides. My preference was a BMX and that is what we scheduled.

Normally, those of us with dcis do not see an oncologist. However, I was assigned one because the bilateral was postponed due to covid and the breast surgeon wanted me to take tamoxifen in the meantime.

the oncologist also preferred that I have a lumpectomy on both sides. I asked him the reason. He mentioned the survival rates. He also said it's because his happiest patients are the patients that have the breast they were born with.

After the bilateral, the pathology report showed I had lcis/adh in the right breast. At that point my breast surgeon said she was glad we did go ahead with the double mastectomy.

All this to say is that I agree with you. Sometimes it doesn't seem to be a right or wrong answer just the answer that feels right at the moment.

Keep us posted.

There really is no “clean margin” with LCIS/ALH because it tends to be diffusely through the breast (often both) and it usually does not show on imaging. Because of this there is really no way of knowing if there may not be more of it elsewhere in that breast

Glad your decision is made. As you said, you can always have the second mastectomy later if you decide you want it, so this gives you flexibility.

Good luck with the surgery on Friday!

Good luck everything.

Well I had surgery and the margins were too close- .1mm The surgeon is recommending more surgery to get 2mm margins.She provided 4 options for me and she said I needed to make a decision. And there aren't any wrong answers. I can have mastectomy, but it isn't really needed. I can do nothing. I can go in and she will just take more tissue. I can wait 3 weeks, get a mammogram first and look for any more calcifications. And then she will go after that part of the tissue. And she will have a plastic surgeon there to reshape my breast. I'm kinda leaning towards this idea since I had two lumpectomies in my left breast 15 years ago and it looks like I've been mauled. I know the right breast will be smaller after she takes more tissue out but it would be good if it looked like a regular small breast. I don't know if they can do anything to improve the look of the left side, but I will ask.

According to the pathology report, the area is 3.2cm, it is grade 2 with focal grade 3. I guess that means there are small areas that are grade 3. They didn't find any micro invasions. YAY. So still no chemo. I'm 70 years old, so she suggested radiation for sure but said no one would care if I decided against adjuvant therapy.

I've been getting my mammograms every year since my dx in 2005. I am surprised that I had all this DCIS pop up that quickly so I'm not wanting to face this again when I'm 80. I feel sad even tho I know this could be so much worse. Take care everyone.