Anyone experience regional recurrence of stage 1 ER+ BC < 5 years?

Hi all🙏 , I have local recurrence 10 years after mastectomy and lymphectomy. It started with redness and itching in the scar from the lymphectomy. I showed my doctor straight away and had US straight away, but nothing showing. 6 month later a bit more irritation and getting small lumps in the axilla with burning sensations on my back, another US with nothing showing. Now a year later, it has spread to the skin on the side of my chest and in the mastectomy scar. Now waiting for CT scan on Wednesday to see how to proceed from here!!!!😳😳

I noticed what I thought was a skin tag, but when it was biopsied (since the oncologist was suspicious) it was indeed a return of the BC...I've read in the lit that a local recurrence like this after radiation is very rare, about 2%, so I was just 'lucky' 🙂 Since had returned and was close to skin surface, I had to have a mastectomy, and since no sentinel node found, she removed 8 more nodes, all clear (after 8 removed at time of previous lumpectomy). It has been 1.5 yrs now, I have adjusted to the new me.

I am very happy you received MRI - is this part of your surveillance? I had lumpectomy for 2 cm ILC and finished radiation Feb 2023 and on Letrozole. At 57 yrs old I asked to have 6 months alternating mammo , MRI as very dense breasts. My onco at Dana Farber was very difficult and pretty much fought me on the request!

After my second follow-up 3D mammogram at Moffitt in Tampa I also asked about getting an MRI done on the next visit and was told it wasn’t needed. The NP assured me that their equipment would spot the smallest growth. I’m not totally convinced after reading testimonials from others about how their cancer didn’t show up on mammogram.

Yes it is part of my treatment plan because I have a CHEK2 mutation. I had a 3D mammogram that did not pick up my tumor. Only the MRI did. We caught it so early, it meant my overall treatment regimen wasn't as harsh as it could have been.

I just don't understand why these docs do not rally behind us ILCers - especially with dense breasts. Early detection is all we have and the argument that we might have to "chase" benign issues is not something that most of us "worry" about. Also they may say the long term mortality is no different with early recurrence but how'bout the quality of life?

Yes. 4 years post Stage 1. Radiation and lumpectomy done. Now 4 years later spread to pelvis, femur, and shoulders.

I'm so sorry to hear this but hopeful we have treatments that hopefully will be part of your strategy! Keep us posted. I'm assuming you continued with surveillance mammos but how was your mets caught. I'm also hopeful that liquid biopsies will be more widely available. xoxo

I am a runner and had low back pain for years. Took x-ray to see if arthritis and found spread.

I got my appt moved up to 5 Feb.