Need advice please

lstagg

Hi everyone, I had BMX with sentinel node biopsy on 10/25, and got my path report back. There was 5.5 cm of DCIS, but no invasive component found, praise God! All three lymph nodes they removed were negative as well. The only thing that concerned me was that the deep margin that they got was only 0.5mm, and another margin (superior) was 1mm. The surgeon told me today they do not recommend radiation because she took the specimen all the way down to, and including, the pectoral fascia. I was really excited about no radiation and moving forward with my reconstruction (I did have tissue expanders placed), but a friend of mine who is a radiation oncologist told me he disagrees with the surgeon and that he feels I have a higher chance of recurrence, up to 15%, without radiation. My DCIS was ER+, PR-, grade 3 with comedo necrosis, and I am 51 years old. I asked my nurse navigator to ask the surgeon about this and now they have decided "since I have questions" to take it to tumor board to discuss, and the next available slot is 15 days away. Now I am concerned that I will either offend the surgeon (which I know sounds stupid), or end up with radiation that I don't really need, or NOT end up with radiation that I do need. Does anyone have any experience with a similar situation or advice to give? I haven't figured out how to add my information at the bottom but will do that ASAP. Thank you!

TB90

Istagg, I can so feel your struggle. Eight years ago, almost to the day, I started on a similar path and faced the same questions. And I was 53. I had 5cm of Grade two DCIS with minimal necrosis, but actually had a microscopic positive margin. I forget the terminologies but mine was upper margin. I was told that I went from a 1% chance of recurrence to 13%. My breast surgeon dismissed this. But I was kind of freaked. So I researched extensively. I had a number of studies to present to my RO and it was basically a 50/50 for and against radiation. He agreed. He summed it up to my personality and how well I could handle risk. Sort of similar to purchasing RSP’s. Lol. I am very cautious in my financial investments and felt the same about my health. I had to reduce my risk of recurrence. Radiation reduced it to about 7%. BUT it introduced risk from radiation and prevented further radiation in the future should a recurrence occur. I have never regretted my decision as I have absolutely zero SE ‘s. But over the years, I have put DCIS into perspective. It isn’t the crisis I thought it was. I think I could handle the 13% risk factor. I have read so much even since then and your risk is very low no matter what you decide. And many studies suggest that any margin is a clear margin. So welcome to the lack of decisiveness in science. I wanted the right answer. There is none. Only what you can best live with. But your future is so optimistic. Please try to keep that in perspective. You have time to research, ask questions and decide. There is no wrong answer. Unfortunately, there is no right answer either. I would love to hear what they recommend. But it is ultimately your choice. All the best

SuQu31

I'm so sorry you find yourself in the “very fortunate but still have unknowns" group. You will see my signature below. I had a “close" anterior margin (near the skin) after my BMX for DCIS. My surgeon said she could remove a “wedge" of tissue from the area, or I could have radiation. Honestly, I wanted both, but my desire to “just get rid of it" caused me to choose additional surgery. Plus, I obviously had gone into the mastectomy thinking radiation would not be part of my treatment. I won't ever know if I made the “right" choice until I do or do not have a recurrence, but I spent a good bit of time early on worrying about it. I even discussed possibly pursuing radiation after the additional surgery, but ultimately decided that I had done what was reasonable, and needed to learn to live with the uncertainty that unfortunately is part of this process.

I realize my situation is not exactly the same as yours but I wanted you to know you are not alone. It is very disconcerting and upsetting to think you have done “everything" by having a mastectomy and then find that you have a close margin and may or may not need additional treatment. I do not believe that possibility was even mentioned to me before surgery, so it was surprising to think that after mastectomy, I needed more treatment. TB90 was so kind to respond to me when I was going through this, and I wanted to pay her kindness forward.

Please let us know what you decide. Your situation and decision process may help the next woman who comes along. Take care

serendipity09

Sorry you find yourself here. My situation is not exactly like yours, but I can relate. During my BMX (Sept 2020) I had, like TB90, microscopic positive margin on a lymph node. BS thought I should have another consultation with the RO. He felt rads was not necessary nor did the second opinion I received. I was relieved. I started Xeloda exactly a year ago tomorrow, but could only complete three of the eight cycles due to bad SE's. I'm praying that the SE's were residual SE's from ACT spring summer of 2020. Feb. 2021, not even a month and half after my last dose of Xeloda, I discovered a "blemish" at the end of my scar line on my cancer side. To me it just looked like an ingrown hair. MO, BS and PS felt it was a suture that did not dissolve completely, so we kept an eye on it. July 2021 I had my exchange surgery and the biopsy on the excision of that blemish came back positive. I was diagnosed with a recurrence. I was devastated. PS went back in to make sure there were clear margins. Radiation was back on the table. I'm three weeks and a couple days out from my last radiation treatment and I'm starting Xeloda next Tuesday. I now wish I would've had the radiation last year, but am thrilled to be done with it now as I had a very difficult time with it, especially the last two weeks and the two weeks after (I'm good now).

I don't tell you my experience to scare you, but to say I wish I had advocated for myself better when I found that blemish cause in the back of my mind I kept thinking that it should not have been there. You are advocating for yourself when you question whether or not you should be doing radiation. I was lucky that it was a local recurrence, but nonetheless a recurrence. Because of this experience I am constantly questioning all of my doctors and if they get offended, oh well. I should not be where I am now.

I hope that everything goes well for you and that you get the peace of mind you need.

bcincolorado

I am sorry you are here and glad you have a nurse navigator. She should be able to give you good information on your situation since every cancer is different and every person is different in how they react and handle things. Mine gave me a huge book even about the cancer and went though things and it had a ton of information in there since I was pretty stupid about cancer before I got it myself. I wish you the best and keep us posted.

Jelson

Making decisions is exhausting and frustrating, especially when there are unknowns that no one can answer in the present time. Your DCIS was on the left side so that is where your radiation will be directed. Be sure to ask about the potential impact of radiation on your heart and if there are steps to mitigate it.

There is no wrong choice here.

WC3

lstagg:

Your concerns over your treatment are completely valid. Your friend is an expert and when two experts in the same or adjacent fields disagree, it's appropriate to further discuss the issue to find resolution. It sounds like the surgeon is not taking this personally and has taken the appropriate course of action.

Juju-mar

you are perfectly right to get a second, third or fourth opinion. It is your life, your decision, but get all the information you can to make the best decision possible.

Julie

lstagg

Thank you all for your input, it is so appreciated! The tumor board is going to meet on November 17th, and discuss this, and then let me know what they think collectively. I guess I will feel better since there are two radiation oncologists that will attend and I think it is better to get more opinions when I have such conflicting advice. I will let you know what they say! Pray they make wise decisions, as I am leaning on their expertise for sure.

MinusTwo

Istagg - glad you are going to have tumor board discussing it. You could even consult another doctor or an oncologist.

I also had DCIS and spoke to an oncologist up front before surgery - just because. I had a bilateral mastectomy with beautifully clear margins. SNB on both sides all clear - so that was the end of it. I thought I had thrown everything at the beast. I had reconstruction & went on my way. Two years later it seemed a micromet had escaped either before or after surgery and I now had IDC in a lymph node. So now IDC & HER2+. A stunned tumor board agreed - chemo, ALND surgery, radiation.

Personally it made sense to me to throw everything but the kitchen sink at the darn BC. Hoping you get an answer that you are comfortable with.