Recently Diagnosed with DCIS Breast Cancer

[May2023HighlandHike]

Hello All! I was recently diagnosed with Stage 0 Noninvasive DCIS breast cancer, my surgery is scheduled for the 29th, however, during the MRI (which the Surgeon wanted before surgery) they found something very small in the left breast, that will be biopsied on the 19th. I'm supposed to have surgery and then radiation treatments. I'm wondering now, if I should just have a double mastectomy w/reconstruction or stick to the original plan? So confused! I'm usually ok, but sometimes I meltdown. Today was a meltdown day. This is so hard. I commend all of you that have gone through this. You are strong. I am not.

[Happyrosie]

this sounds so difficult to deal with and I really don’t know how you ought to go. In the UK we would be allocated a breast cancer nurse to whom we are free to talk at any time over the phone, and there are breast cancer charities who are willing to talk things over.

On this forum we don’t know enough about you and your history to make comments other than to say that we’ve all come through the other side, strong and healthy.

I wish you all the best

[ba5083]

So sorry to hear of your diagnosis. Unfortunately your decision has to come from within. From my experiences (as a brother to 2 sisters diagnosed with BC and a wife) it comes down to a personal choice based of the Drs recommendations. 1 sister I lost 20+ years ago at 49. Other sister was triple negative, decided on a lumpectomy only for her cancer to return in 2 years and she had a double mastectomy (no reconstruction). My wife's (57) was diagnosed far later in the process (ILC) and had a double mastectomy w/expanders for reconstruction. She is constantly complaining about the expanders (which she will probably have for another 10 month because of treatments) being uncomfortable.

[Lisa-1959]

So sorry you are dealing with this...not something any of us are mentally prepared to deal with! Since your second biopsy is before your surgery, that pathology report will give you and your doctor additional information to consider in helping you decide whether to proceed with a lumpectomy/radiation or a mastectomy. Try not to dwell on the what ifs until you have more concrete information. I know that is easier said than done, but you are struggling to make a decision with incomplete data.

I was diagnosed in November 2020 with Invasive Lobular Carcinoma. It showed up on the 3D mammogram, but interestingly enough, it didn't show up on the MRI. Also, the pathology report was ambiguous, so I actually went into the surgery not knowing if I really had breast cancer or not. Then the final pathology report showed I had not only ILC, but I also had LCIS...and DCIS. Thankfully it was all caught early (Stage IA), but the DCIS was found in the excess tissue removed to ensure clean margins...only wound up with a minuscule margin. I then had 33 radiation treatments...I am 2 years out and doing well. Praying the same for you!

[May2023HighlandHike in reply to Lisa-1959]

Thank you, I am still floundering, but will know more on Monday hopefully!

[ROCgal]

I opted for a bilateral mastectomy once it was detected in one side. My diagnosis was DCIS, just like you, but I tested positive for the CHEK2 Gene mutation and my mom was diagnosed with stage 2 on one side when she was 48 (I was 42 when I was diagnosed). For me, I just wanted to eliminate (as much as possible) something creep up later in the other breast. Also, on a super surface-selfish level I didn’t want one Gen X boob and one Gen Z boob. Now that I’m one year out from the initial surgery I definitely miss any breast sensation - I don’t think it would have changed my overall treatment plan, but I miss it more than I thought I would. But like other folks have said, it really has to do with your gut.

For me, opting for the more “radical” surgery meant I didn’t have to deal with chemo, radiation, or hormone suppressant therapy, which I have been grateful for. Again, I say follow your heart. If your nodes are clear and it is what they holds true, you and I are among the lucky to have caught it so soon…. I’ll be sending positive vibes your way!!!

[May2023HighlandHike]

Thank you so much! I still go back and forth on this. I have another biopsy on the other breast on Monday. I am ER and PR Negative, it is localized in the one breast, I don't know what that biopsy will reveal in the other breast, My surgeon said I'm a good candidate for breast conservation surgery, but like you I just want to be done with this and not have to worry about it any more.

[ROCgal in reply to May2023HighlandHike]

keep us posted (if you want) - we are all rooting for you!!!

[Fallin77]

Hello May 2023, I'm sure this is more than you want to hear about this but I was like you 4 years ago stage O noninvasive LCIS in my right breast just under observation, tests every 6 months and then I developed 2 cancers in my right breast, I wanted my right breast out and then they told me I had fibrocystic changes in my left breast so I knew how that was going. The doctor told me if I stayed with my left breast, I would have a 40% chance of getting cancer there so I chose the bi-lateral mastectomy. I just wanted this nightmare to be over with 😪 I'm estrogen receptor + so since I'm 45 I need to shut down my ovaries. I'm having a total hysterectomy today, 1 year and 4 months after my mastectomy. I'm scared about surgical menopause "Yes", but I also couldn't stand being on tamoxifen for 10 years, going to an oncology clinic to have Lupron injections every month or living with the fear of bone, brain or lung cancer. It's devastating to think about not ever having a child and I always ask why did this have to happen to me. No family history of this. I would advise that "Yes" you should have the bi-lateral mastectomy once they find something it's not going away. I had no problems with my mastectomy and reconstruction. It was all done in 1 day. With the pain shot they give you now, you are numb for the 1st 5 days so the recovery is not so bad. I wish you all of the best and you will have the strength to do this. God Bless