2nd operation DCIS

Hi paulina_gtzr​ I was diagnosed with high grade DCIS in my right breast in November 2024.  I have a history of breast cancer in the family. The surgeon originally thought a lumpectomy however when I mentioned family history, he mentioned double mastectomy and I grabbed that opportunity. I had double mastectomy mid November with immediate implant / nipple sparing surgery.  It was the right decision for me as pathology showed a larger DCIS on the other side of the same breast as well as another type of cancer in my left breast that hadn't been picked up in any of the imaging (very dense breast tissue).  My sentinel node came back clear so I didn't require any treatment.  

paulina_gtzr​ Hello again, I just found this thread. I am way at the other end thankfully. I never thought possible to be 14 years down that road :) I too started out with DCIS, had a lumpectomy CLEAR margins, radiotherapy and tamoxifen. 4 years later the unthinkable, it came back! in the same spot! even with clear margins, radiation and tamoxifen. They still cannot explain how it happened, bad luck I suppose? So very blindsighted I had Stage 2 Grade 3 aggressive. I underwent another lumpectomy, chemo, I had Arimidex and then Aromasin. About 13 months after finishing chemo I was recommended to have a mastectomy even after all of this...which leads to the post that you commented on. It's been a super hard road, but I never ever thought I could be this degree of normal again, yet here I am :) I ended up osteoporotic and was on Prolia injections for 10 years. I am now off them and off all medication as of last year :) every day is a blessing. Trust yourself and do what you need to do. I'm sending great vibes for a return to good health. :) xMelinda

Hello Paulina_gtzr

So sorry to hear you're on this journey too! I'm a bit further ahead of you but know only too well the twists & turns that can come along this road. I describe it as riding a rollercoaster blindfolded! 

I was the same as you..my first op didn't have clear margins, so I went in for a second op but they didn't get clear margins that time either! DCIS can be multifocal and if you have dense tissue then it's hard to see in scans but also hard to see when they operate as well. 

After my 2nd op,  I asked for an MRI as I wasn't prepared for them to have another go at getting clear margins & still miss some. And just as well I did! It showed that the entire breast was diseased and a mastectomy was my only option.  

Unfortunately my journey didn't finish there.. after two more recurrences , 5 more surgeries,  radiation and endocrine therapy I have finally reached a 6 month milestone of no scans or hospitals!

I recommend radiation even if you have a mastectomy. People sometimes think that a mastectomy means it won't recur but the radiation really helps mop up any stray cells that could regrow. 

 I hope this helps ..being thorough is always worth while. I'd hate to think of what might have happened if they had got clear margins at my 2nd op. They would have stopped looking further and the rest of my story might have looked far worse a few months down the track! 

All the best with your days and weeks ahead! There is light at the end of the tunnel!