So confused….phyllodes tumour

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Hi 

New here and not even sure if I should be here. 
Apologies for the essay!

Bit of background: am 45, had a fibroadenoma removed from right breast 7 yrs ago.

More recently: found a lump in left breast, following mammogram, ultrasound and biopsy, fibroadenoma diagnosed (I felt so relieved) and this was removed approx. 2 weeks ago by a different consultant to the one that diagnosed after 3 cancelled op dates. The consultant doing the surgery was quite abrupt in attitude when meeting me just before the op but I didn’t think too much of it as I was super nervous about having a general anaesthetic as I’d never had one before. 

I met with the consultant that did the op at the end of last week for post op check. 

She was again extremely abrupt and advised quite matter of factly that pathology after surgery details Benign Phyllodes Tumour not fibroadenoma with typical leaf like appearance. 

She advised she hadn’t taken margins during surgery as was believed to be a fibroadenoma but that pathology suggested she could go back in for margins as there are stems/stalks left in the breast tissue. 

Instead, she suggested monitoring with an ultrasound/clinical assessment in 6 months and kept repeating it was benign. She implied that it may come back so she’d have to go back in then anyway. I agreed, as I was kind of stunned as hadn’t expected this news. 

She didn’t give me anything to read or suggest anywhere to look up info about these tumours and to be honest by the end of the meeting, I was pretty shaken so didn’t think to ask. 

I’m usually a very strong, logical person but having got home and processed this and also googling phyllodes tumours I’m now really confused. It seems they are very rare but can be cancerous and that taking a margin could be pretty important to stop recurrence, though I’m unclear if this is just for borderline and malignant tumours? 

Am thinking do I go back to the consultant and ask to speak again, ask for a second opinion (not even sure how that works on the nhs), go to my gp??

I’m kind of nervous going back as before the meeting I had also planned to ask about HRT as I’m considering this for peri menopausal symptoms. I managed to do this, however the consultant was also extremely dismissive of this, questioning me in a way that felt like I was being interrogated about why I was thinking about this and finally concluded no definitive information about this in relation to these tumours.

She also only checked the incision wound at the end of the meeting which felt like an afterthought and after asking me if I wanted her to. This was literally me standing up, lifting my top, her standing half a metre away at her desk and advising yes looks ok. 

I’m not overly happy with how it looks to be honest and feel a bit butchered compared to the result I had on the other breast previously. 

Her general demeanour has now made me feel uncomfortable and if I’m honest I don’t know what to do for the best. 

Letter received after this meeting (can’t see it has been sent to my gp, as other letters have) is also really brief and simply states:

Histology showed a benign Phyllodes Tumour with extensions into normal breast tissue. These lumps have a potential to recur and hence she will be followed up 6 monthly for 2 years. She can keep an eye and get in touch if she notices changes. 

Does anyone have any experience of these tumours/advice?

Thank you if you got this far!!

  • Hi Leopard Lady

    Welcome to the forum and sorry that you find yourself here. While my tumour was cancerous I thought I’d reply to you as you haven’t had any replies yet. Unfortunately the information on google on any kind of tumour is often out of date. Rely on sites like this one and breast cancer now where the information is up to date.

    If you feel that you haven’t been dealt with properly you are perfectly to ask for a second opinion.

    Hopefully someone will be along shortly with the experience you Are looking for.

    Best wishes

    Daisy53

    Community Champion Badge

  • Hi

    Welcome and sorry to hear you have had a Phyllodes tumour. 

    Although, it is an awful shock to believe one thing and then be told something completely different, but as mentioned below, you can ask for a 2nd opinion - unsure how you would go about this?  Maybe contact your GP surgery for advice or perhaps speak to someone from MacMillan?

    As for your scar; it should improve over time.

    Good luck Four leaf clover

  • Hi,

    I had a Phyllodes (Borderline) tumour removed in Sept 2006, then had further surgery a month later to obtain clear margins. Thankfully I have not had a recurrence but now struggling with the menopause and have been advised not to take HRT because of my Phyllodes tumour history.