Second guessing my decision

Anonymous

Second guessing my decision

StellaNorth

Hi everyone,

I have DCIS level 2, 4cm x 3cm x 4cm. I’m er and pr +.
I met with the onc surgeon on Tuesday and ended up making an appointment for dmx to flat. Then on Friday my primary dr called saying she supports my decision but it’s “a little extreme.”

That made me start questioning my decision. And thinking back the surgeon didn’t really try to push me in any direction so maybe I am over doing it with a dmx? Should I have received more guidance?

I’m going a little crazy. I’m so eager to move on that I was happy to have a surgery date. But then I got that call and I’ve been feeling down ever since. I’ve sent a message to my surgeon to get her thoughts and I’ve been reading the boards here. thanks for listening.

exbrnxgrl

Stellanorth,

You have DCIS. By level 2, I assume you mean grade 2? In terms of treating your DCIS, I think many medical professionals would consider a bmx (bilateral mastectomy) extreme as there has been recent debate over whether DCIS is even cancer. It is considered by some to be a pre-cancer.

That being said, I know that there have been some women who do want a bmx in your situation because they hope that hey will never have to face any cancer situation again. They want not just their breasts removed but they want anxiety over future problems removed too. I have never been in your situation but I’m sure it would be a tough decision to make. Take care.

ruthbru

I would talk to an oncologist. I think the initial thought of most people is to 'just get rid of them" but is not something you want to rush into. A mastectomy is a serious surgery and has many lifelong consequences of it's own. Take your time, get a least one second opinion, check around on these boards to read the experiences of others. You do need to know what you are getting into so that you do not have regrets later.

ruthbru

Here are a couple threads to check out:

Topic: A layperson's guide to DCIS https://community.breastcancer.org/forum/68/topics...

Topic: lumpectomy vs mastectomy - why did you choose your route? https://community.breastcancer.org/forum/68/topics...

StellaNorth

thank you both.
Yes, grade.

MinusTwo

Stella - I was diagnosed with DCIS and had a bilateral mastectomy. I had expanders placed and implants "installed" 6 months later. I was so relieved and glad to have it done, especially since the "good" breast showed problems after surgery. I've never regretted my decisions.

However even with clear margins, I had a local recurrence 2 years later - apparently a micromet had already excaped the ducts before surgery. So had to go through chemo, ALND surgery & rads. I don't mean to scare you, but wanted to let you know I am STILL glad I had the double mastectomy up front. (LOL)

LivinLife

I also had a BMX with pure DCIS. I was grade 3 with expansive comedo necrosis which definitely factored into my decision. It was also 3 cm by diagnostic mammogram then up to 6 cm on MRI. It was large so they expected invasion though we wouldn't know until final pathology. I had already had several call backs on my other breast, as well as 2 stereotactic biopsies on that breast and then the call back started with my left breast and a stereotactic on that with yet another biopsy recommended after MRI. I would get sooo irritated (in my head) with the stereotactic biopsies b/c they were sooo painful on my ribs and my neck. I also was unable to undergo radiation b/c I have scleroderma so mastectomy was my only option. I was large busted and would not be undergoing reconstruction - I have healing issues and just did not want or need additional surgery. I didn't want to walk around with one large breast sooo...... Long story short - I'm really happy going flat! I don't wear prosthetics at all. After being large all my life and somewhat self-conscious it is so freeing. Sleeping and exercising are easier, no bras...... When I was first diagnosed I thought a BMX was an extreme decision for me. As I took some time to research on this site it became what I wanted - no regrets. Don't let anyone, even a doc, talk you into something different than what you want.... sounds like you may need to think about this a bit more though it is YOUR decision, YOUR body and you're the one living with both the rest of your life not anybody else..... It's important you are comfortable with what you decide....

StellaNorth

Thank you everyone