Pleomorphic LCIS

Diagnosed with breast cancer DCIS/LCIS
1

Hi, 

I have recently been diagnosed with PLICS and would be interested to hear from anyone else who had the same diagnosis as it seems to be quite uncommon.   It seems there are conflicting views on how to treat, but the accepted view is that it is similar to high-grade DCIS.

I had a lumpectomy 2 weeks ago to remove what they thought was a 5mm area but it was actually 35mm with no margins and they think it could be much bigger and there could also be invasive disease, so now I have been told I must have a mastectomy.  

So I’m currently considerng whether to have immediate reconstruction or not. Given that they don’t really seem to know how bad it is yet, they cannot say what treatment I may need next - so I am thinking best to delay reconstruction.

And another part of my brain is wondering whether I really need a mastectomy at all!!

Be great to hear from anyone else who is or has been in a similar position.

Thank you.

2

Hi Hannah 

Welcome to the forum, I don’t have the same diagnosis as you, however I had a radical mastectomy, due to the fact the tumour consumed my skin. I was diagnosed with IDC. 

I had no choice, I am happy though to have it, the tumour and the skin has gone and I had clean margins. Go with what you feel is best for you, I was worried about having just one boob for a while, however this outweighs the alternative. 

Lots of luck 

 

3

Hi,

I wondered how you were getting on with your treatment and if your disease has been stopped in the tracks, are you still receiving treatment?

I was diagnosed November 2020 with Pleomorphic carcinoma of the breast. 55mm tumour 15 nodes on left, 35mm tumour 2 nodes on right.

Bilateral mastectomy in December, followed by Chemotherapy in February.

I understand that standard care for a fast spreading cancer is chemotherapy first?

Would really appreciate any feedback from anyone with similar experience of this rare type of breast cancer.

Thank you,

Pen x

4

Hello Hannah,

Hope whatever decision you made was a good one!

I’m 43, have bilateral breast cancer (IDC on right, PLCIS on left). Already had 2x lumpectomies on the left breast but the surgeon found 3 more foci in the last surgery (not enough deep margin),  so I will need a 3rd one. Since it’s so rare, I can’t find info on best course for next step (3rd lumpectomy or mastectomy). Had to stop tamoxifen while I wait for next surgery and will still need radiotherapy for the right breast…

Would be great to hear from you as there are so few of us!

Thanks in advance 

Juliana