Apologies for those of you who check in every day – no update yesterday. One big task organised yesterday – removals of the items I’m inheriting from Mum’s house into storage. Hopefully will be collected next week. My sister-in-law and I also managed to pack up a couple of boxes and clear out a few more drawers and cupboards – slow progress when I can’t lift weighty boxes and I ache and pinch. I collapsed in a heap when I got home, so apologies for no update.
Today though I’ve been Little Miss Proactive. (Is there a Little Miss book with that title? – Roger Hargreaves??)
I’ve sorted out lots of correspondence and paperwork for Mum’s estate and I’ve chased up the radiation appointment – will await a return call.
Excellent news (No. 1) – the clinician for the phyllodes trial returned my calls. She’s not yet received my consent form but explained further about the trial. All the data will be anonymised and I will not be told anything specific relating to my case however as I’ve said all along, if my case helps one more person, in any way, I’m all for it! The trial is essentially looking at the genetic makeup of each sample, looking at how the genes may relate to the type of tumour ie benign or malignant and also if this has any bearing on recurrence of the tumour. We talked further about the trial and I’m really hoping that they are able to publish a definitive paper following the trial.
The clinician and I also discussed my case. Although she has not seen any of the histology or scan results, I wanted to ask for her opinion with regard to what she considers a clear margin for a phyllodes tumour really is and also if she feels adjuvant radiation therapy is of benefit after surgery. She believes that adjuvant radiation is only needed IF surgery has not produced definitive clear margins and that a clear margin for phyllodes tumour is the same as other breast cancer. She is also of the opinion that phyllodes does not respond to radiation therapy!
We also discussed the differences of opinion between US and UK medical teams ie the US usually conduct a full mastectomy and radiation therapy for malignant tumours.
However the problem is, as we all know by now and was reaffirmed by the clinician, is that there simply isn’t the data or case reports that can be relied upon to say that this or that is the right thing to do or indeed not to do!
I need to, for my own peace of mind, understand totally that a sufficient clear margin has been achieved surrounding the entire cavity through the surgeries performed. I would also like to discuss, with someone who has seen and reviewed the pathology and histology results, the effectiveness of adjuvant radiation therapy.
Excellent news (No 2) – Another friend of mine has contacted a family friend who has agreed to review my case, histology, pathology slides etc and provide a second opinion. This will allow me to ask the questions that I need to ask and perhaps to settle my mind about what I should be chasing for or not.
Although I have absolute faith in my surgeon’s capabilities but am acutely aware that there is little information or guidance about phyllodes or indeed little experience in dealing with this type of tumour as it is simply so rare – a consultant may never see a phyllodes tumour. One thing that I miss with the NHS in the UK is simply that the time allowed for each patient is so small. As you will know having read my blog so far, it is usually after the consultations, when the shock or reality of what has been said sinks in, or simply after the long words have been googled and researched, that the questions then emerge – and then who can we ask? I do however, have to commend the job that my consultant and Macmillan nurse have done, and do every day with so many patients. An incredible job… just wish there was a little more time and a few less patients!