Anyone else have 6cm plus of DCIS?

I am in a similar situation. First spot initially thought to be 1 cm. Grade 3 comedo necrosis. MRI picked up another 7.5 cm. I also have another area of calcifications behind the nipple.

They will biopsy the most posterior part and the area behind the nipple tomorrow via MRI. I’m very concerned about there being hidden invasive, even if a lumpectomy is an option. I am also not sure if nipple sparing will be an option. I am following your post carefully. It would be good to know how many women had invasive found after their original DCIS diagnosis

It's hard to believe the sizes. How is it still "in situ" when it has gotten that big?

BWH5 - I will keep you posted and hope you so the same. Perhaps you should ask for an MRI? I didn’t ask. It was recommended because of my age (45) and because my breasts are dense. I’m very happy that I had it done. Best wishes

Hi, I had two tumours (mixed IDC and DCIS) close together which were suspected to be surrounded by DCIS (based on imaging) totaling about 6 cm of disease. I was told I needed a mastectomy and nipple sparing wasn’t an option. In the end I chose to go ahead with mastectomy without reconstruction.

After surgery it was confirmed that one of the tumours was almost entirely DCIS and the other was moe mixed. No comments on pathology about the extent of the DCIS beyond the tumours. If you have larger breasts it is sometimes possible to do a lumpectomy combined with a reduction rather than a full mastectomy. I’m doing fine after my mastectomy but often wish a lumpectomy with reduction would have been possible given I wasn’t interested in reconstruction. Benefit of the mastectomy is I got great margins, and that gives m a little extra piece of mind.

I had 5cm of DCIS , I had a lumpectomy and breast reduction, originally the surgeon said if I didn't get clear margins it would have to be a mastectomy. But when it came to it, he said he'd try again as the margin was clear but too close. And the margin shave was successful. I was very afraid they would find some amount of invasion, they warned me it was quite likely as it was high grade comedo-type. But thankfully it was all in situ.

I also had two reductions to the other side for symmetry, I had to wear a partial prosthetic for a year as radiotherapy and two excision left a very big size difference. But finally the cosmetic outcome is fine, and I'm really happy with the results of my lift and reduction.

BWH5- so many things which are cancer-related fits into a protocol. We tend to forget the cases which aren't black and white. Good luck with your decision making. Keep us posted.

Hi Jo6359, thank you so much for reaching out. I have had 3 unsuccessful attempts to biopsy the large area. The first time they tried, it was with ultrasound, but the tissue was too dense and they couldn't see the area. The second time they tried to biopsy via MRI, and I was told something was wrong with the MRI machine and there was a big black strip through the pictures. I had the repeat MRI yesterday and apparently the breast was too compressed in the machine, so the contrast was unable to reach the breast. No enhancement even though 7.5cm of additional enhancement showed up 3 weeks ago. I was so frustrated with yet another fail, but the radiologist (very senior doctor) saw something in the images that caught her eye even without the enhancement and she marked it and immediately biopsied it under ultrasound with a rush for results. It came back today as invasive ductal carcinoma with some dcis. I really, really hope that you get an MRI and that you have a better outcome .

Thank you!! I really needed that virtual hug today.

amlmom. I was same as you. Very large DCIS. Then mri. They didn’t tell me about idc but they saw it on mri. Confirmed when I had mx. I was told no choice but mx with all the DCIS. Also no radiation as I had mx. Something to think about. My idc was 1 cm and I also had diep reconstruction immediately. I didn’t need chemo as my oncotype was 22 and I am 53. Very happy with my outcome. Also I had skin sparing but lost nipple. Getting reconstruction of that on Jan 28. Had my initial surgery on June 4 201

BWH5, I'm glad to hear that you made your treatment decision. It does feel so good to have a plan. I was very anxious about the anesthesia, but by the time the surgery date arrived I was so glad to see that anesthesiologist -- let's do this! My BMX and Stage 1 SGAP took 11 hours. It took a while to shake off the anesthesia (incentive spirometers help a lot), but really it was just a nap to me. I had 7cm of high-grade DCIS and no IDC was found, but it was extensive enough that my care team thought it was imperative to remove it. There is a great deal of relief when you wake up and realize that it is GONE. I'm sorry to hear about your husband's diagnosis. It sounds like you will have no trouble staying busy until your surgery date. Best wishes on all the steps ahead!

Hi BWH5,

I had oncoplastic surgery too - a lumpectomy (left) with a reduction on the right side in 2016. My idc was only about 1 cm (just below the nipple) but they took out over 13 cms of DCIS (somewhere between 5 o'clock and 2 o'clock). I went from a DD to a C.

It was one surgery about 5 hours long - breast surgeon for the first 30 min or so and then the plastic surgeon. Plastic surgeon took out additional margins after breast surgeon. The surgery went well with clear margins and I hope the same for you.

I was considering just a lumpectomy but the oncoplastic reduction was suggested by the breast surgeon on the tumor board (surgeon, oncologist and radiologist). I am very happy with the results.

Wishing you the best,

Reikion