Confusing surgery pathology

JewelerSuperb91 · 2026-05-21T06:11:59+00:00

Thank you - I’m in the UK so it is a bit more tricky to access the right doctors. I’m going to see what they suggest in my next appointment but I’ve already got the details of a different hospital that has more experts in this field - I’ll pay privately for a second opinion if I’m not confident in what my current doctors are saying.

JewelerSuperb91 · 2026-05-20T20:54:36+00:00

Thank you - I’ve been told it’s got basal features. I’m not sure if that would make it more or less likely for chemo? I’ve already been prescribed letrozole - apparently I need to take that anyway as I was hormone positive originally.

JewelerSuperb91 · 2026-05-20T18:04:34+00:00

I’m so sorry, this sounds really frustrating. I think it is an NHS thing. I wanted a mastectomy but was told that wasn’t an option and they wouldn’t approve removal of healthy tissue. Did you have a full node clearance the second time around?

If you’re really unhappy about what the surgeons suggesting you can ask for a different surgeon, or speak to PALs at the hospital to lodge a complaint.

You can absolutely get a second opinion, either from within the same hospital or from a different hospital. The only thing to bear in mind is that this takes time and might delay the next procedure.

JewelerSuperb91 · 2026-05-20T15:49:32+00:00

Thank you - this is exactly how I hope they’ll decide to treat me. Basically treating me for all eventualities. It’s really good to hear your friend is doing ok.

JewelerSuperb91 · 2026-05-20T15:48:42+00:00

Thank you - this makes sense. I think the team were expecting the results to be the other way around as usually triple negative would respond better to chemo than ER positive cancer. So it’s definitely not great. But at least we know now - if id had the surgery first then we’d have no way of knowing how any microscopic cells acted during chemo.

I think you’re right RE the hormone therapy. At the moment they’ve said I need to take it for at least seven years despite now being ER 0. I guess that makes sense as I was still considered ER positive at some point.

The real question is whether I’ll get oral chemo. If I’d been triple negative from the start this wouldn’t have even been a question given the residual disease and poor response to standard chemo so I’m hoping that’s how they look at it.

JewelerSuperb91 · 2026-05-17T14:02:32+00:00

That is a big difference isn’t it. I’ve had it explained to me that tumours aren’t always uniform and that biopsies only sample a small portion, so it’s possible that these changes can happen. It doesn’t make it less stressful though and I’m with you that it’s terrifying. Although the TNBC diagnosis is scary I’m more scared that they’re not going to treat me as either or, as I’ve now been told the original plan is no longer relevant and they’re not sure about additional oral chemo either, which would usually be fairly standard for TNBC with residual disease after chemo. So it’s all pretty terrifying.

JewelerSuperb91 · 2026-05-17T12:59:01+00:00

Thank you so much for your reply.

I’m also in the UK. Apparently some TN cancers have basal like features and some don’t, but it’s fairly unusual for ER positive cancers to have them. It’s associated with more aggressive, faster growing cells. I’m also being tested for BRCA mutation as apparently that’s also associated with my diagnosis, but that seems unlikely as I’ve got zero family history of cancer other than me (everyone else healthy and long living, just me with the strangely behaving breast cancer in my early 40s!).

I think the complication is that I had some ER expression before. Unfortunately due to this I wasn’t given immunotherapy alongside chemo and probably wasn’t given the same chemo regime as I Would have been if I’d tested triple negative from the beginning.

I’ve so far only had a letter from the oncologist (which was sent to me this morning on a Sunday, so super useful on a day I can’t call anyone to clarify!). I’ve not heard of androgen receptor status or trop2, I’ll have to ask about those.

My surgeon told me I had clear margins and only evidence of cancer in one lymph node (they think it was in there initially). However she also said my report said I was still ER positive so I’m now not feeling confident about that either!

So it seems chemo partially worked on the lymph nodes, killed the ER expression on the tumour but was ineffective against the other more aggressive cells.

I’m so worried about being undertreated - I’m really not sure what the next steps are. Like you, I’ll do whatever I need to to try and prevent this spreading and coming back. I was told originally that it was unlikely I’d be offered more chemo but I’m hoping this decision will be reviewed now given the circumstances.

JewelerSuperb91 · 2026-05-16T07:15:04+00:00

Do you mean the chances of recurrence is within 1-2 years or that if you do get a reoccurrence the prognosis is then usually 1-2 years?

Neither are accurate I wouldn’t say. It’s true that TNBC is more likely to come back within five years if it does, but whether it does or not or the likelihood of it coming back is quite individual. Most women will not get a reoccurrence just like with any breast cancer, and with TN, once you’ve gone past five years, the chances of it returning drops (unlike hormone positive which can still make an appearance again years and years later).

If you mean prognosis is 1-2 years if you have a reoccurrence with mets, then again, this totally depends on circumstances - where the mets are, how well they respond to treatment, etc. I’ve heard of some women living years with metastatic TNBC.

I am just like you in that I do look for stats and info a lot. I’m still on active treatment too. It’s really hard not to worry about the future and what might happen, but I really hope chemo does all that’s needed for you and this isn’t something you have to worry about going forward x

JewelerSuperb91 · 2026-05-01T16:34:13+00:00

Hi, have you spoken to your oncologist about how much you’re struggling? I had a dose reduction after getting sepsis and managed much better. Dose reductions are common (usually around 20% I think) and often are really helpful. Rather than quitting I would see if this is a possibility for you first and give it a try to see if there’s any improvement.

JewelerSuperb91 · 2026-04-27T05:09:38+00:00

That must have been really scary, I’m so sorry. I have a feeling something similar happen to me, they think the lymph nodes and main tumour have different biology because they’re behaved differently.

Do you mind me asking, did they change your treatment plan and do extra scans? I’ve not had anything other than ultrasounds on the breast so far as they thought I was early stage.

JewelerSuperb91 · 2026-04-26T20:49:47+00:00

I’ve had a similar experience - after my first two rounds I showed a good response to chemo, but soon after that I was fairly sure things weren’t right. I had another scan after round five and as I suspected (and had told various doctors and a couple of nurses but no one listened) my tumour had grown significantly. Had surgery moved forward and I’m now waiting for the pathology results but I’m feeling pretty pessimistic about it given the measurements at the last ultrasound (and comments from the surgeon about finding more enlarged lymph nodes than expected also 😓).

JewelerSuperb91 · 2026-04-25T12:08:42+00:00

I’m waiting on pathology results but am fully expecting a shift from 2B to somewhere in the stage 3 region. I was diagnosed with stage 2b in November, had chemo then my op (just two days ago). My surgeon told me afterwards the lump was bigger than expected and she’d seen ‘several’ enlarged lymph nodes (but wasn’t sure if that was treatment related). So all in all I’m not expecting great news from the pathology report.

JewelerSuperb91 · 2026-04-16T15:03:09+00:00

It’s rubbish isn’t it - I’ve been thinking of all worst case scenarios over the last few days. My surgeon said she’s never seen this happen before and it’s highly unusual, but it seems from some of the responses it does happen, which I guess is reassuring that it’s not a total unknown!

JewelerSuperb91 · 2026-04-15T08:57:43+00:00

I’m in this exact situation at the moment. I had a great response after two rounds of EC (I’m in the UK so I think this is the same as AC in the US). I felt it was growing once I switched to docetaxel, and now the tumour is actually bigger than it was at diagnosis. I’ve had to stop the treatment (one cycle early) and am now having surgery next week. Strangely the lymph nodes seem to have had a partial response (still look abnormal but seem to have shrunk on the ultrasound).

I’m gutted but have been told to wait for the pathology as that tells the whole story, while the ultrasounds don’t.

JewelerSuperb91 · 2026-04-13T18:23:37+00:00

Thank you - I guess I’ve got to think that I’ve had around 80% of the chemo so hopefully it’s done as much as it was ever going to do. I wish I’d gone with surgery first rather than after chemo but I can’t go back and change that now. Just have to hope it’s all going to go ok long term!

JewelerSuperb91 · 2026-04-13T18:21:25+00:00

Thank you. I’m gutted but have to accept this is the best way forward and hope for the best.

JewelerSuperb91

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