Looking for similar diagnosis

Hi violamama, sorry you have to be here but there are lots of folks that will be able to help you and encourage you. I had the same DX as you. Grade 3, er-pr-, also with comedo necrosis. I don't know if there's anything I can tell you other than what you may already know. Feel free pm me if you want.

yep. Same here. ER-/PR-, high grade DCIS. Had bilateral mx on 3/31 with reconstruction. No regrets. Recovery wasn't so bad. I'll be followed every 6 mos for 5 years with clinical breast exams.

i chose a bilateral mastectomy after my dx simply because I wanted the girls gone... I didn't want to go through this again.

As for reconstruction, I wanted to feel as normal as possible and not have to relive the experience every time I looked in the mirror. I'm 37, with a husband and 2 young kids. I have my whole life ahead of me!

Rrobin0200, Thanks for your reply. I'm in the process of reconstruction and my PS plans to do prepectoral implants. I'm wondering how you do a manual breast exam with the implants. Follow ups were not offered, except, as I said, for the annual skin check.

I agree, I wanted my girls gone. First opted for LX but then after LX realized the area was 4.4 cm instead of 2.5 cm I was no longer comfortable with keeping them. (I'd also done research after LX that lead me to that decision, not an easy decision and very personal) Also ended up with other stuff in there after MX - LCIS & ALH.

Just want to mention, while there are good reasons why someone might choose to have a BMX, including some mentioned here, and while a BMX may significantly reduce one's recurrence risk and the risk of another primary breast cancer, a BMX does not guarantee that someone will not "go through this again".

Approximately 1% - 2% of women who have BMX, even for just DCIS, will have a localized recurrence (in the chest area). Similarly, approx. 1% - 2% of women who have a BMX will end up with a new primary breast cancer diagnosis at some later point in their lives. Even an excellent surgeon performing a BMX will not be able to remove all breast tissue (I recall reading somewhere that generally about 3% of breast tissue remains; don't know if that's true or not but it seems reasonable), and with some breast tissue remaining, there remains the possibility of a breast cancer diagnosis.

After a BMX it's important to remain vigilant and to check for lumps and changes. In my years on the board, I have sadly seen more than a few cases where women thought that they couldn't be diagnosed again after a BMX, didn't check out suspicious changes and ended up being diagnosed with a more advanced recurrence or new primary.

this is my personal opinion, one that worked well for me and my family. Yes, it may not eradicate all chances of recurrences, but I still hope and pray that I am making the most radical approach that is available.

I have known many, many women who have had recurrences with both a lumpectomy and a double mastectomy. There is NO "right" answer here. Believe me, if and when there is a 100% cure rate, I'm quite sure most women and men for that matter, will go that route.

I understand the need for useful, accurate information. We all need to be informed. But please don't quote anyone without knowing their personal stories, their personal risk factors, and their discussions with their medical team along with their families.

Hi violamama Sorry was away from the boards for a few days. I was diagnosed with low grade ER positive DCIS, as well as dense breasts and fibrocystic disease, and had enhancement globally on MRI. I also have a strong Family History. I opted for a bilateral MX. Lumpectomy was off the cards due to the extent of microcalc on mammo. 

From a prognostic point of view the higher grade is more aggressive and has a likelier chance of turning invasive. Also if its ER -ve, then using drugs like Tamoxifen is out. I would be taking this in mind when discussing with my BS. Choices of treatment are usually MX vs lumpectomy and rads and Tamoxifen. However you would not be able to take the Tamoxifen.

If you want my take on the surgery, yes it's doable. True I am well aware that I still have a recurrence risk. But I am very happy to have decreased my cancer risk from around 35% to 1%, and I can live with the 1% doubt. As my BS and oncoplastic surgeon have told me, my overall risk is now less than the general population. I have also avoided the need for rads, since rads are not needed after MX for DCIS. And do keep in mind that rads do not come without side effects. Also should you have a recurrence after having had rads, and then need to go on to MX and recon, you're doing recon with radiated skin, which has its own problems. Another thing I kept in mind when taking my decisions was that when a biopsy is taken it's actually a very small piece of tisse compared to the whole tumour, as well as the fact that other tumours not visible on mammogram may also coexist. Should you do opt for a lumpectomy instead of mastectomy I would try to at least get an MRI.

On the other hand if you do opt for the bilateral mastectomy, you should discuss the possibility of sentinel node biopsy. My BS had explained that should they have found any invasive element on the breast removed, and we hadn't done the sentinel, then he would have had to go in again and do a full axillary clearance, something I wanted to avoid unless absolutely necessary. 

Take care and pm me if you think I can be of any help. I had looked up the NCCN guidelines on management of DCIS when taking my decisions.

Hi. I have...no make that HAD....high grade ER- PR- DCIS with comedo necrosis. I decided to have lumpectomy with radiation. It's been almost 1 1/2 yrs since my dx and so far all is good. At first I wanted to just "cut em off"....those were my words to the breast surgeon. But after much discussion and research, I felt comfortable with lumpectomy/radiation combo. My personal recurrence risk is somewhere between 8 and 15%. I can live with that. If I am unfortunate and have another "event", I will have a mastectomy at that time.

Everyone is different and has different things that factor into their decision. Even drs don't agree on so many things regarding DCIS. I think the best thing I finally did was to trust my medical team, and stop googling everything. I was a wreck for a long time but feel at peace about my decision now.