I received the call from the radiation clinical oncologist following the referral. She (Anna!) said, like so many others before, that she doesn’t have experience of phyllodes tumours and has therefore referred my case higher up to a sarcoma group meeting on 18th December. She has been in email contact with my surgeon and I felt from our brief conversations that perhaps he had, in addition to the medical aspects, also mentioned my eagerness to understand, question and research. Anna was keen to understand more about phyllodes tumours and we talked about the Pezner and Barth reports (which I later emailed through to her… hopefully this will save her some time rummaging for the same data).
The calls gave me an opportunity to understand more about radiation therapy and perhaps the reasons for reluctance in my (or other phyllodes) case. If radiation is given at this stage it may reduce the risk of recurrence but that there are other risks associated with the effects of radiation. Radiation may mean that any further surgery is hampered by the tissue damage. So if any recurrence was to occur, the surgeon may have difficulty identifying where any tumour and stroma (tenticles) are within the damaged tissue and vein network. I hadn’t realised (probably naively) that the scarring of radiation may have adverse affect on future surgical options and any reconstruction. Although as I’ve said before, should I need a mastectomy I would not persue a reconstruction.
Anna has confirmed that she will be in touch in the early evening of 18th December or 21st December but to keep the afternoon of Monday 21st December free for an appointment, should radiation be considered the right course of action!
Fingers crossed we’ll get there soon.