Lumpectomy or Mastectomy??? Reconstruction or no???

jazalea

I'm newly diagnosed with stage 1 cancer, in my forties and trying to decide what to do. My oncologist has said I could have a lumpectomy and radiation or mastectomy. I am considering a double mastectomy because I have a strong family history of breast cancer. My mom had it twice. And I was high risk before already. Also just last year I had some precancerous cells carved out of the other breast. And the MRI biopsies are very invasive and I have been having MRIs and mammograms twice a year for years. Otherwise I am a healthy person, but this regimen of imaging and biopsies and surgeries is exhausting and time consuming and having a double mastectomy that would lower my cancer risk to close to zero seems worth it.

I talked to one plastic surgeon about reconstruction but he made me feel so uncomfortable, saying a mastectomy was unnecessary surgery and there is a risk of infection and other complications and reminding me that the survival rate for lumpectomy is the same as mastectomy.

And if I do have the double mastectomy I have to decide on reconstruction vs going flat and what kind of reconstruction to have. The Dr. Said I could possibly have a nipple sparing mastectomy.

Decisions, decisions decisions!!! And I have to decide soon. I would appreciate hearing other people's experiences who have been in my shoes.

Barbc1

I had my diag on 15 Sept 22. Invasive carcinoma, ductal. ER +, PGR+, HER Neg. I am 65 yr old. On 1 Nov. 22 I had a bilateral mastectomy, 1st and foremost make sure your Surgeon is 100% on board with your decision. My Surgeon was/is. -0- reconstruction, -0- nipple, -0- skin "saving", in case you want reconstruction later. Do your research, ask questions ask many questions. Had the surgery, 2 + sentinal nodes positive for cancer (radiation injection before operation). This puts me invasive once it spreads to lymph nodes. Took the oncyo, and chemo will not work for me. There is a site "no shirts required" lists Surgeons that are ok with flat. Today is the 11th of Dec 22 and I would not change my mind. Ask questions, Ask questions. Some reconstruction carries a bc risk.

Britti

Hi Jazalea

I received my first dx in 2013. I was 44 with 2 young children and was scared to death. The surgeon offered the choice of a lumpectomy with radiation or a mastectomy. I immediately chose the lumpectomy. As others have said I had to go back in for the margins and then the radiation. A year later I had fat grafting and a lift. The cancer recurred in 2021 so a mastectomy was performed.

Reconstruction was important to me. Without making this post too long, in my experience radiation had interfered greatly with reconstruction (my LD flap failed) and my attempt at immediate reconstruction led to infection, 10 mos with a picc line and multiple daily infusions - which was a nightmare by itself.

so this was my experience, I’m still working on the reconstruction and had a stacked pap flap the middle of last year. If you have any questions about reconstruction or recovery please let me know!

jazalea

https://csn.cancer.org/discussion/comment/1703011#Comment_1703011

Thanks for sharing. It sounds like you've been through so much.

Truds

I was given the option, I was only stage one and my cancers (I had 2 close together) were only 8mm each. I was told lumpectomy plus radiotherapy was equivalent to mastectomy. As I had no history in my family I opted for lumpectomy xx

SMHlax

I was diagnosed in Sept 2022 with stage 1 invasive tubular carcinoma. After spending six weeks learning about all the options and talking with all the drs, I opted for a bi-lateral, nipple sparing mastectomy with immediate reconstruction instead of a lumpectomy. This procedure took place in December 2022. My breast surgeon and plastic surgeon were extremely patient and encouraging. When the final pathology came back and I met with the oncologist, he felt I needed no further treatment at this point. This meant no long-term medication either. When I made the decision, I felt like I was being very radical but now I'm literally done. My advice is ask lots of questions and tell them you want all the options available to you presented. Good luck!

Desiree18

https://csn.cancer.org/discussion/comment/1703527#Comment_1703527

That's amazing @SMHlax So happy for your results! I'm almost two weeks post op. Getting used to my new reality but so excited for the future! Left breast didn't have anything; they was able to get everything out of the right and removed 16 lymph nodes. I see my oncologist on 2/6. We'll see what she says regarding further medication. I do have to start radiation though. But it's all good. The worst is behind me now!

Tamiann

Jazalea, you and I will be going through the same thing at the same time. I had my lumpectomy at the end of December and now it's time for the next phase of treatment. I start radiation in about a week and a half (they are still setting up my treatment plan).

I'm so happy that your surgery was successful - congratulations! That was a brave choice, but it sounds like it was a good one. Best wishes in your next stage of treatment. I'll be thinking of you and praying for you. We're fighting together! Best wishes!!

pattylocke161

Hi Jazaelea. I hope you are ok. I felt exactly the same as you. When I first had the diagnosis, I made up my mind to get double mastectomy and reconstructive surgery. However, at Dana Farber Cancer Institute, they talked me out of it. They said it was very major surgery with lots of risks and would not change statistics. Had lumpectomy and will have my first radiation treatment Monday.

rrgena

Here’s what happened to me after choosing lumpectomy:

My surgeon didn’t get clear margins and basically forced me into a THIRD surgery for a mastectomy. Then days later, because of so many surgeries so close, I went to the ER with a DVT which had progressed to worse, a PE. I ALMOST DIED. I am fine now, but I’m furious with her. I have been tested, no genetic alterations for DVT’s so my advice is, A SURGEON IS NOT PERFECT. Failing to accomplish clear margins TWICE is a big problem. Take into consideration they can fail at their job. Do what’s in YOUR best interest, always. ALWAYS.

jazalea

https://csn.cancer.org/discussion/comment/1703936#Comment_1703936

Wow that sounds awful. I am glad you are okay now. Thanks for sharing your experience.

jazalea

https://csn.cancer.org/discussion/comment/1703901#Comment_1703901

I hope everything goes well for you with your radiation and that you are cancer free now

jazalea

https://csn.cancer.org/discussion/comment/1703560#Comment_1703560

Thank you for the message of encouragement. I hope everything goes well for you in your treatment