I was wondering if anyone had experience of borderline phyllodes? I have searched the forum and most of the posts are from some years ago.
In Jan 2022 i found a lump and due to a 6 week wait at the breast clinic, I went private to have it investigated. They did an examination, ultrasound, mammogram and core biopsy. The core biopsy showed normal breast tissue but the ultrasound showed a very small area which the consultant said had a slight leaf structure so as I had no private healthcare and to carry out another biopsy and pathology was expensive, he said I should still go to my NHS appointment and he would send all my results to them and they would carry out a further core biopsy.
This was carried out mid February and I had an appointment with an NHS consultant. He was rather dismissive, didn’t seem particularly interested in the private reports and told me it was likely to be a fibroadenoma, in which case they would not remove it. He went on to say that if i wanted surgery I would need to go back to my doctors and get a further referral but that as it would not be classed as an urgent surgery, it would likely be “12 months to 2 years” before it was done.
I waited the two weeks for results but didn’t receive a call from the clinic so eventually rang them myself and they advised that it was a fibroadenoma and no further action was required unless it significantly grew. The letter confirming this arrived about 6 weeks later.
Fast forward to July 2024 and nothing much had changed (maybe a slight growth but nothing major) and I had a fall on holiday straight onto my breast. As the lump felt a bit hard and swollen after the fall i intended to go to the doctors on my return, but in any event got called in for a routine mammogram.
That lead to further investigations as it had increased in size (and increased in size further after the mammogram and further core biopsy) and was removed by wide local excision on 2nd October as they suspected a borderline phyllodes.
I’ve had my follow up today, and it has been confirmed as borderline phyllodes, low grade. All margins were clear, but one was somewhere between 0.3mm and 0.5mm (whereas they hoped for 10mm all the way round).
My surgeon says that as long as the margins are clear then it is ok, as sometimes you cannot get a full 10mm as there is nothing there to take. He did however say that he would do a further surgery for mastectomy if that was what I wanted. He has also referred me to the oncology department to see about radiotherapy.
I’m really worried about reoccurance and am stressing about whether i should go back and have a mastectomy or not and whether i should have radiotherapy now or wait to see if it reoccurs.
I get the feeling that they are giving me as many options as possible due to the fact they get it wrong the first time, but I just don’t know what to do and i’m so tired from all the thinking. I’d be grateful for any comments.