Recurring DCIS: Radiation vs Mastectomy: How do I choose?

@myoga

Oh, yes, I am sorry, I meant SMX versus DMX. I’m just wondering from a feeling standpoint/chronic pain, numbness standpoint if it would be better to keep one real breast with feeling/warmth, etc. or does it feel OK having both done. Of course, I have been reading about all the things that can go wrong. Thank you.

If I were you I would both Breast off. I wish I could turn back Time I to have a reoccurrence after lumpectomy and removing seven lymph nodes in December 2021 but I was left with positive margins didn’t find out till later. If I had gone with my gut and had the left breast just removed I believe I would’ve been good. I wouldn’t be laying in this bed metastasize to my spine and had a major spine surgery Dr. seeded it under my arm after she cut the two cancerous tumors she used the same knife, when in my axillary area which had no cancer so on top of having a positive margin, it was seeded under my arm if I had just had the breast taken off, she wouldn’t have been anywhere near the cancer inside and it would’ve been safe to use that knife under my arm instead, I had the left breast removed later more lymph nodes and then she had to go 7 cm down under my arm where the cancer was right where she took the lymph nodes out and left cancer cells.and I would live longer. it’s funny these doctors say you don’t need to take the Breast off. It doesn’t matter it does matter the cancer started in the breast. It’s ductular . The duct are in the breast. I don’t care what they say. The breast going is a good thing. and I still think if I got my ovaries removed no matter what my age and I’ve already gone through menopause I still think that would’ve helped too I’m going to talk to them about it now. The problem is it’s through my spine and now they say I have another fracture

Also, another thing my mastectomy was much easier on me than the lumpectomy And that’s how the doctor talked me out of it she said you know that’s a longer surgery and more recovery time and it’s a bigger surgery but it turns out the worst pain for me was under the arm and the lumpectomy and that was a longer recovery for me. The mastectomy was not that painful. It wasn’t for my aunt either.

@michelenyny
I was worried about chronic pain too, but it didn’t happen. I think I read too much that I spooked myself. After seeing my sister sailing through recovery I decided to go through it. Honestly my recovery took longer due to the hematoma on the radiated breast. But I recovered and am glad I did it. Now it’s been over a year that the whole thing seems like a blip on the radar.
If you post a new thread about SMX vs DMX, you will get a lot more responses.

Yes, that is a great idea. I will post something. I just joined this group.
Thank you so much for telling me this, I know I am reading too much and researching too much, and I am doing the same thing… Scaring myself about anything that could go wrong. Unfortunately, I don’t necessarily think we know what will be the exact best choice, (Or should I say at least worst choice), until we pick one, and hopefully it’s the right one. I have not spoken to anyone who has had a mastectomy, So I am trying to see what others Experiences have been. Thank you again. ❤️

Get a second opinion. Your prognosis and recurrence risk is so individual that it’s impossible to compare with other people. We have opinions and personal experience but we don’t have the diagnostic information or the expertise to advise you on the best treatment.

I had a lumpectomy with radiation. (IDC, HR+, HER2-, Stage 1, Grade 2, DX age 48)

And if I could go back, I would have insisted on a double mastectomy. I asked, but my surgeon declined, saying that it was a small area and that the surgery would be much easier on me than the recovery for the mastectomy.

I regret every day that I didn't push for a second opinion. But I was so scared being diagnosed with Cancer that I just did whatever they told me because I wanted it out ASAP.

I did not truly understand the lifelong side effects that would come along as a result of the radiation. I have constant painful lymphedema in my breast. As well as painful fibrous tissue, and it hurts every. single. day. Additionally, the radiation damaged all of the lymph nodes in my breast and armpit, as well as my sweat glands and hair follicles. My immune system is diminished, and I don't sweat properly. Even though I put lotion on every day, the radiated area peels like a sunburn, and it's been three years.

I feel like the radiation oncologists glazed over the lifelong side effects. Because it is so common to treat breast cancer with radiation. I was also told that they are not able to radiate the same area twice, so when the cancer returns, my treatment options will be limited.

I'm afraid to travel. Because change in elevation can cause my lymphedema to spread down my arm. And don't even get me started on the side effects from tamoxifen, or aromatase inhibitors. My quality of life is severely diminished.

Please take the time to do Research for the best options for you. You may need to ask a loved one to help you if it becomes emotionally difficult.

I live with the regret every single day and it breaks my heart.

@melissab23
This is my second go around I had ER + PR+ HER2 - in 2019. Had 2 lumpectomies and 6 weeks radiation. Now 2026 same type cancer reoccurrence same breast (left) as 2019. The radiologist here wanted to re radiate. Got second opinion (thank God) and he said NO Way you need mastectomy. So that’s my next step. I’m sorry you went through all that! It’s so hard to know the right answer.

@julesofnp
Don’t be afraid of mastectomy. Ask for nerve blocking it will keep the pain away for two days. The surgery sounds scary but it’s not. At least in my opinion. Search this website for recommendations regarding recovery. There are quite a few good advices. Wish you all the best.