Antibiotics have done their stuff and the infection has nearly all gone (evil side affects though!) Leaving shortly to get through the roadworks to the hospital in good time for our appointment at 2pm with the consultant. I’m feeling quite positive about it though (which is good) as, apart from the blip with the infection, I felt good straight after the last excision and have had no more shooting pains since. I don’t know but my money would be on the blighter having growing pains.
Fingers crossed and I’ll update you later… Put that champagne on ice.
Update – We’ve seen the consultant and I’m finally out of detention(ish). He confirmed that he was happy that he had now removed the entire phyllodes tumour AND got a sufficient CLEAR margin. He’s referring me to the radiationtherapy unit who are based at a different hospital to talk about available follow up treatment.
There are two very different schools of thought about the necessity of this additional treatment – essentially because there isn’t enough data to be examined or clinical trials run upon which to rely! However I have taken the time to review a lot of medical journals and articles (as I am sure he and the team have) particularly the following reports from which I have extracted part of their ‘conclusions’. The report written by Richard J Barth in the Annals of Surgical Oncology (2009) 16:2288-2294 – “Margin-negative resection combined with adjuvant radiotherapy is very effective therapy for local control of borderline and malignant phyllodes tumors. The local recurrence rate with adjuvant radiotherapy was significantly less than that observed in reported patients treated with margin-negative resection alone.” and the European Society of Therapeutic and Oncology October 2004 – “While benign tumors have a good prognosis after surgery alone, adjuvant RT is recommended in the management of malignant and borderline tumors.”
Given the above reports (together with other reports I have seen) I am hoping that the radiationtherapy will be given – sounds totally weird to say ‘hoping’ but I really don’t want to do this all again and have more Thursday surgery! I’ve pretty much worked my way through the hospital’s thursday evening meals and not sure my tum can cope with a repeat of any of them!
BUT (and there had to be one, well actually two BUTS to the above good news)… the full histology report isn’t yet back. The reason this is important is two-fold. Firstly that I can be totally happy that they really have got the whole phyllodes tumour and any ickle sneaky tenticles too (although they seem confident of this with the part report they have). Secondly, they discovered a really incy wincy (my words not the consultants), pre-cancerous DCIS. The consultant made the valid point that in recent years there have been lots more of these DCIS’ found but they believe this to be due to the new technology rather than an increase in them existing. He also said that had we not had to just go through everything with my phyllodes tumour, I might never have known nor needed to know as it could exist without ever turning invasive, but that there’s always a risk. Explanation as to what a DCIS is – Macmillan – DCIS. Yes they did laugh at me once again being individual and different ie having both types – I like to think of it as being ‘unique’!
The team, consultant, Macmillan nurses, oncologists etc etc are going to have a group discussion at their weekly meeting about me, my phyllodes tumour, possible chance of recurrence and in addition the DCIS on Tuesday following which they will call me to discuss further options. They will prior to this meeting have the full histology report. I however am, at this moment in time, quite calm about it and happy that I might never have known about it and that radiationtherapy may well nuke it at the same time, or indeed that they managed to cut out the whole DCIS with the phyllodes tumour and have obtained a clean margin on that as well. Here’s hoping.
I’m also so very impressed with the honest approach that I received from the consultant and my Macmillan nurse and reassured that they are offering me the best possible advice and treatment but also allowing me to make informed choices about any next steps, be that more surgery or alternative treatments. I also feel comforted that they will keep a very close surveillance on me over the next few years (in two months time and then every 6 months with MRIs, mammograms and ultrasounds) and then just annually, should nothing recur. I have been incredibly lucky with the team that have been looking after me and intensely grateful for that assurance.
I’m very much looking forward a glass of champers to celebrate the good news that I got today… join me?
PS friends/family I’ve not told Dad the last bit of this but only that they’re happy that they’ve got the phyllodes tumour and I will have radiationtherapy… just in case you’re in touch, please don’t tell him – he doesn’t need to worry any more!