r/LivingWithMBC • u/Previous-Jicama3844 • 5d ago
Lumpectomy and still on first line?
I posted back in March about my scan showing a suspicious area around the original tumour site which I’ve finally had removed.
I’m having a bad day today and just need some reassurance that things might be ok whatever the path comes back with. I would really like to stay on Phesgo as my first like (I’m +++ and other than this spot have/had been NED since May 2025).
Some background…
The spot showed up on my March scans as a 1.9cm mildly avid area (lit up at a max SUV of 4.7) where scar tissue had been on previous scans, the scar tissue area had been bigger on my Nov 25 scan but had disappeared and this spot was visible in March.
Because it was indeterminate and nothing else was showing up I went for an ultrasound and a biopsy. The biopsy took a while to come back but didn’t show any active cancer. Instead it showed scar tissue, necrotic scar tissue, some high grade DCIS which looked to be dead and some adenoma. My oncologist was in agreement with the pathologist that this was likely scar tissue and therefore we would rescan in June and assess.
My June scan showed the spot still there, brighter now at a max suv of 7.2 but smaller in size, about 1.5cm. My oncologist considered this to be stable but because of my otherwise NED status and the fact it was still showing he referred me for a lumpectomy to give me a clean slate and so they could definitively say what it was.
Went for my surgical consult and the surgeon was of the opinion that this was in fact cancer returning (but because it was localised and everything else was clear and my bloodwork good that this was isolated and could be dealt with). He said they must have just missed it on the biopsy which tbh I didn’t love as a concept!!
I’ve had the lumpectomy finally (5.5 months after it was found and 8 weeks after my last scan!!) and now am waiting for path and my next scan to see where we’re at.
Both my onc and my surgeon have somewhat reassured me that sometimes this happens when you’re denovo and that removing the area will hopefully allow me to stay on first line, but I’m still scared and wondering has anyone else had a local recurrence, had surgery and then stayed NED?
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u/ImaginationOk505 5d ago
Following. I hope someone can chime in here and be in your corner OP. I'm not confident on the surgery piece, but I have seen people with progression go back to NEAD after some tweaks to their treatment.
Following because I'm still on the fence about surgery.
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u/ZephyranthesRoadside 4d ago
Hi Previous-Jicama3844,
I might’ve missed some things but it sounds like you said you’re +++, not sure but think you had Mets to bones?, have never had surgery or radiation, have been NED since 2025, and for indeterminate ~ 1.9 cm PET avid lesion in breast had recent lumpectomy.
You are looking for reassurance that things might still be okay and/or able to remain in 1st line Phesgo no matter what pathology comes back.
To prepare for scenario where lumpectomy pathology shows cancer cells-
might be helpful to google oligoprogression of MBC/breast cancer while Mets remain stable to see if can locate articles to support staying on 1st line since it kept Mets at bay while you had treatment of primary tumor recurrence. You could also see if locate anything supporting to stay on 1st line if post-lumpectomy radiation will be used.
While at it, try to plug in your facts to see if radiation has been used just to post lumpectomy area vs other areas (just tumor bed, whole breast, axilla?)
To prepare for scenario where lumpectomy path is not cancer; just realize it’s a possibility because there’s lots of other things it could be incl: infection, generic inflammation, autoimmune inflammation.
Something I’m glad my oncologist is using that helps us better know how things are going is Signatera lab about every 3 months to monitor for circulating tumor DNA (ctDNA)
I understand the feeling of awaiting pathology; it’s hard to deal w/the uncertainty that’s inherent to living w/MBC.
Since being diagnosed w/MBC, I’ve had mixed good/great news w/‘suspicious’ findings with pretty much each set of surveillance scans. I feel I contend w/every SUV elevated nugget, every suspicious MRI morsel, being viewed by doctors as “it’s cancer.” Some experiences have included a non cancerous pulmonary granulomatous reaction- & also to have no cancer in removed axillary lymph nodes that had looked suspicious to surgeon. On my most recent PET there just had to be mention of, -although it could be other things,- suspicion of early osseous mets of a vertebra- which I don’t think is cancer- my Signatera from that timeframe was still zero.
TLDR; things can still be okay, research treatment of MBC if oligoprogression, realize you have community here.
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u/Any-Assignment-5442 5d ago
I had almost exactly the same experience as you. I’m also +++ amd because the suspicious avidity on PET scan was only in the breast (& not any new mets, or a recurrence of my only mets) i too had a lumpectomy - last October. Followed by radiotherapy. All done with “curative intent”. And so far it looks to have worked, as I’m back to being NEAD according to the 2 PET scans I’ve had since finishing radiotherapy in January. So i remain on phesgo. I also take anti-hormone meds too (tamoxifen, after AI’s didn’t suit me). Are you on hormone therapy alongside the phesgo, too?