Had double mastectomy 4 years 3 months ago for lobular carcinoma had chemo and tamoxifen stage lla

Hi Diane,

Although it is unusual (and I want to emphasize that I am not a doctor), it is possible for a recurrence to occur in the remaining tissue after a breast is removed. The only way to know for sure, though is through further testing (and I know how hard the waiting is). Do bear in mind that it is unusual though - and that as someone who is er+, if it is a recurrence, you will have MANY treatment options.

Do keep us posted OK? And take good care-

Laurie

Diane, Laurie is right. Even with a mastectomy, SOME breast tissue can possibly remain. It's unusual, but happens. What tests do the docs propose next for you? Please ask if anyone has considered inflammatory breast cancer...  I'm not a doctor,and it may be impossible, and if not impossible, would be VERY unusual, but your symptoms sound similar to those of IBC. So please ask about that. And I hope they figure it out, because even with a double mastectomy, I can understand you still worrying... Best of luck- PJH

Hi Diane -

I agree with Laurie & PJ.  Recurrence is ALWAYS a possibility with a mastectomy, though it doesn't always mean you'll have one.  I know from experience that if one tiny little cell of brest tissue is left behind and maybe the meds you are on fail to work properly, that the cell can indeed grow larger and become cancerous.  I know because I had a modified radical mastectomy 3 yrs ago and my cancer came back in the same spot of my chest wall.  I originally had Invasive Ductal Carcinoma, stage 11a at 31.  Now exactly 3 yrs later I have what they call Recurrent Brest Cancer - no staging given, and it is beleived to not have spread.  I've had more chunks of my chest wall removed and am going through radiation at the moment, then on to chemo.  But I understand that with remaining chest wall left, I could STILL develop cancer if this radiation does not put a stop to it (hopefully) once and for all.

I just wanted to chime in and tell you that from personal experience, recurrence CAN happen with a mastectomy - it seems it's something the drs forget to tell us.  They focus instead on how the longer you are in remission the better your chances are, and blah, blah, blah.  So I suggest that you and your doctor get to the bottom, and rule out even the most impossible of diagnosises, so that you can find out what it is that is truly causing this.

Good Luck!

Angi