extensive dcis w/comedo necrosis

miss_g7

recently diagnosed with dcis. should I be concerned with the extensive adjective with my diagnosis and the comedo label as well?  Will this require mastectomy. any additional knowledge will be helpful. any experience with this is greatly appreciated.

Ariom

Hi miss g7,

Just wanted to say hello! I know how overwhelming it is to just have a Dx with not much information.

It will really be the discussion that you have with your Surgeon that will decide if you have a Mx or a Lx, size and position of the DCIS will help determine that, but there is a wealth of information here on DCIS if you search it.

We have a member named Beesie who has done a great deal of research and has posted the information here. I actually printed it put and gave copies to friends and family so they would know exactly what was going on with my own Dx of DCIS.

I wish you all the very best, please come here and let us know how you're doing.

Edited to add: A laypersons guide to DCIS is a great place to start Good luck!

Annette47

Hi there, and welcome to the club no one wants to join.     Ariom has given you good advice.   In terms of whether or not you'll need a mastectomy, that depends on both what the docs mean by extensive (since it's not a technical term) and how large your breasts are - the reason you would need a mastectomy over a lumpectomy has nothing to do with the aggressiveness of the cancer, as both treatments are equally successful, but it has to do with the cosmetic result that could be achieved.  Or as I put it when helping my mom to make the same decision "What would you be left with".   Again, the answer will depend on the size of your lesion relative to your breast, as well as the location.   In her case, she would be losing the nipple either way, plus wouldn't be left with much as she is relatively small-busted, so chose a mastectomy.   I am larger, had a smaller area of cancer and mine was nowhere near the nipple so I was a better lumpectomy candidate.

As for the comedo necrosis, that does indicate a more aggressive form of DCIS, but as long as it is still DCIS doesn't really change your treatment plan, so you will have to wait for the final pathology from whatever surgery you have to know whether there were any hidden areas of invasive cancer.  Having extensive DCIS with comedo necrosis makes that more likely than if you had a small area of less aggressive DCIS, but is by no means a certainty, and hopefully they will find nothing but DCIS.    Even if they do find a small area of invasion, as long as it remains really tiny, it doesn't really change your prognosis or treatment much.

Nancyinct

Hi Miss g7, I had extensive DCIS, with necrosis. The size of the DCIS was 9.3 cm. I opted for a lumpectomy for a couple of reasons: 1 - Because I had very large breasts and aesthetically I could "afford" to lose some of my breast tissue. I also had a breast reduction on the other side. 2 - There was no bc in my family history so I thought I would take a chance with the least invasive approach. After the lumpectomy, the path report showed 3 multi focal areas of IDC so I had no choice but to have an mx. I don't regrets about my decisions. My surgeries were 6 weeks apart and both went extremely well.

 

miss_g7

thank you ladies for your responses. I had my mri this week and will meet with a breast surgeon next week. should no more about the results next week. I'm a school teacher so I need to make a decision on returning in August or look into a leave of absence. updates next week