DCIS lumpectomy - 3 surgeries needed

@ymadrian, I'm sorry to hear that the second lumpectomy also did not result in clear surgical margins. I'm sure @pattier understands what you're going through right now.

Have you had your appointment with your team to hear the considerations discussed by the medical tumor board? What do they suggest as next steps?

Yes, the medical tumor board meet today to discuss my case. Thankfully, I can move on to radition therapy and no additional surgeries are necessary.

Choosing the right surgeon who has an expertise in breast cancer and margins will save you and your doctors a lot of time. I am searching for a new surgeon because my first lumpectomy surgeon left very narrow margins and "missed" the DCIS that still exists after radiation. I finished radiation in February, 2025 and follow-up mammo showed existing DCIS. I am also taking taking Tamoxifen. I wish you the best of luck and as many second opinions that you can get until you feel safe and satisfied with the treatment plan.

I'm so sorry you are all going through this.

Although we are all members of a club we didn't ask to be a part of, what I've learned is the breast cancer experience is completely different for every single person. My situation will not be like anyone else's due to types of cancer, doctors we use, and information we are given. We are all on our own individual journeys in that way, and what I do for myself is perhaps not the best path for anyone else. However, I recommend anyone getting this diagnosis should talk to any expert you are able, ask lots of questions, and gather as much information you can about your case so you can make the best informed decision for you.

The beginning of my journey, too, was a very frustrating one.

After a routine mammogram. I received a LETTER telling me that it was recommended I come back in for different views. Nothing about finding anything wrong per se. Since I had been told I had dense breasts and probably should have an ultrasound, I blew it off. I heard nothing else.

It wasn't until I went to my PCP months later and told her I had a mammogram and forgotten to have it sent to her that she finally was able to look it up while I was sitting in her office. After looking it up on her computer, she looked up at me and said, "Why aren't they calling you EVERY DAY to come back in?!?"

And that was the beginning of my journey.

The first imaging facility said I had calcifications only in my left breast (which I later found out was cancer). I decided to go to another facility (for obvious reasons) who decided to check my right and, lo and behold, cancer was in that one too. My head was spinning.

I had extensive IDC in the left and was told I absolutely needed a mastectomy. I was told I could do a lumpectomy on the right because they believed it was DCIS and wasn't extensive, but I opted for a double mastectomy. Post surgery, it was found there was actually IDC on the right as well and, it was not only more invasive than they thought, I also had a micro metastases in the first of four lymph nodes. I was grateful I had opted for double mastectomy. However, I then found out they had not gotten clear margins on the left.

My report:
LEFT Breast: ER/PR +, HER2 negative, grade 2, 3/3 node negative, Oncotype 0
RIGHT Breast: ER/PR+, HER2 negative, grade 1, 1/4 nodes micro metastases, Oncotype 12

My surgeon said she wanted to forgo another surgery to get clear margins as I would have to do radiation anyway. That didn't feel right to me. I understood it would be a bit more complicated because I had reconstruction expanders placed at the time of my first surgery, but why wouldn't we get clear margins first?

Looking back, I wish I was in the right frame of mind and had information so I could ask those sort of questions. But I was overwhelmed. She gave me a recommendation for a radiation oncologist.

This first radiation oncologist told me I needed 5 weeks radiation and tossed other numbers at me I didn't understand. I felt as if he was reading a script. I wasn't even sure he had looked at my file. However, he was expecting me to make an appointment that very day. I told him I wanted to get a second opinion.

My oncologist pointed me to Naples Cancer Advisors, an organization who give second opinions on cases free of charge. I met with them and they gave me a lot of information and questions to ask including, "What is the percent better outcome?" Which means, if I do radiation, how much will this help me beat this? I was very grateful.

As cancer patients, many of us are completely overwhelmed and don't know what we don't know. How are we supposed to make such monumental decisions under immense stress without having all the information we need in terms we actually understand?

Upon seeing a second radiation oncologist, I was told not only would I need 5 weeks radiation, I would also need an additional week of more intense radiation for the left side because of the unclear margins. Very different from my first meeting. That seemed like a lot, especially since I would have no tissue between my heart and lungs to protect them.

I then had the confidence to ask the question regarding "better outcome percentage" and she looked a little shocked. She told me it would be 8-12%. When I said that seemed very low for the amount of radiation I would have to endure, she told me I would be jumping up and down if I were a brain cancer patient...but I'm not.

I immediately left and called a cancer center, known for breast cancer treatment, and met with a radiation oncologist there. He told me I had a very grey case. Low oncotype scores (he said he had never seen a zero) but extensive IDC on the left, although it was not connected in one lesion; I also had a micro metastases in one node on the right which meant it didn't light up, but was there.

He explained if there was a "breast cancer playbook" it would say "get clear margins first; if you can't, radiate." He also told me that if I wanted to be very sure and have peace of mind because of the other issues, the radiation would take care of anything not caught. I asked if the 8-12% sounded about right for the better outcome. He said yes, although, again, I had a very grey and not straightforward case.

I felt like he spent time to look at every aspect in my case and give me all my options in terms I could understand. He didn't give me an absolute answer either way. It was the first time I felt like what I would ultimately do was my decision. And I felt like I had and understood the information.

In addition to talking to all these doctors, I did extensive research online. Ultimately, I fought to get a second surgery to get clear margins, decided to forgo radiation, and go on Tamoxifen. After being on it for just over a year, I recently had my ovaries removed (my body refused to go into menopause) so I could be placed on a different AI.

That is my journey so far. August 2025 will be the second anniversary of my diagnosis. I don't know what the future holds, but I feel confident I made the best choice for me with the information I had. Should it come back, I will follow the same path of research and collaborating with the best minds I can find. I will never again be afraid to ask questions.

I am holding you all in my hearts as you find your way through this. Hugs to all.

Even the best surgeons will miss the margin. They’re pretty much cutting blind except for the seed or marker that is there. 1 mm is 1/25 of an inch - about the thickness of a knife blade.

I had a 1 mm focal margin after my lumpectomy. Because it was pure DCIS, intermediate grade, and only a “focal” point margin (meaning there was only a small point where the margin thinned to 1 mm, all other margins were larger) they said I could do another surgery or do radiation. I had already decided on having radiation, and because the thin margin was on the side closest to the skin I really didn’t want them to go in and cut out tissue thickness that might cause me to have more radiation skin issues.

I had decided on radiation because some of the DCIS cell formation was “solid” meaning more likely to turn invasive, the intermediate grade, and because my sister had BC. It just seemed safer.