Whoohoooo, finally, I have discovered the Rare Cancer Support Alliance (www.rare-cancer.org) which not only lists details about a malignant phyllodes tumour but has forums where other ladies have posted and answered queries, given their stories about their journey, what worked, what didn’t work, what they were advised, shared their histopathology reports etc etc.

I posted an introduction to me and my predicament whilst also looking through the various postings and forums for other information.  I also researched previous postings where I note that there are some posts that refer to similar pain being due to surgery and the nerve endings settling down.

I can’t explain how relieved I am to have found somewhere that has honest information and balanced views about this type of tumour.

I also found reference to a Barth report that’s been recently published… Barth Report which although I don’t have access to the whole report has given me food for thought regarding mastectomy, metastasing and radiationtherapy.  Finally I feel that I’m getting a better picture.

Greta called me today following my queries on the answerphone.  She’s brilliant and what a fab service she (and their team) provides.  She gently assures me that have spoken with another consultant (mine’s on holiday) the believe that it would be best to do another excision first to then test this and then, if need be, perform a mastectomy.  The voice of reason was there – she asked if I could cope if they did perform a mastectomy and the testing of the removed tissue proved that they had got the tumour in the first operation.  How would I feel having unnecessarily authorised the removal of my breast?  She’s right – that would fill me with horror.

She apologised once more that the literature given to me about a Phyllodes Tumour has only one line about a malignant version and tells me that she’s been speaking with the publications and reference departments asking them to see if it would be possible to ensure that there is a publication about a malignant phyllodes tumour however she felt that they wouldn’t do this as it is so rare and resources were tight and needed to be spent on more prevalant cancers.

Greta also noticed that I had been booked in for the 2nd operation on 19th November but remembered that I had discussed my music request for the operating theatre as Handel’s Fireworks on the basis that it was Guy Fawkes ie 5th November.  I asked that if there was a reason that the operation should be later then that was OK but I would prefer it sooner and over with but it MUST be with the same consultant – I totally trust him to do the right thing, for me.  Could it be an administration error?

Oh, could I wait for yet another 14 days?

I have been experiencing a sharp stabbing pain in my right breast. It feels a little like a hot poker being stabbed into my breast and pulsing with pain. The pain only lasts for a few minutes however takes my breath away and all I can do is try to breathe through it whilst the tears run down my cheek and I wince with pain. I don’t know what’s causing it ie if the pain relates to the tumour or the reconstruction. I did have shooting pains before surgery but not to this intensity. Today I decided that I really needed to check in with my Macmillan nurse and ask if this is normal. I also wanted to ask about a mastectomy. Are we assuming that the best course of action is to simply do the operation again and then do a mastectomy, if need be – ie to do our utmost to preserve my boob? But if this method might give the tumour a chance to grow further and mean that the outcome may be worse, would it make more sense for me to elect to have a mastectomy at this piont and eliminate earlier the chance of it spreading?

Unfortunately I got the answerphone and left a message for Greta outlining the above. I felt dreadful just leaving a message – what would happen if she didn’t call back as promised within 24 hours? What then? Who can I ask?

Today I’m up very early to drive to London and get that appointment with my Doctor. I need to ask him if I should be signed off from work – I know I can’t concentrate or come to that sit up at a desk for any length of time. I also feel that if I am signed off from work then my employers will ensure that my role is properly resources as my team have been taking the load and doing ridiculous hours under extreme stress. My team were already pushed and doing additional hours due to redundancies and new projects so I’ve felt terribly guilty being out of the office with Mum’s death and now this. The way I’m feeling right now I’m worried about work, my team and stressing about what’s going on but feeling helpless to do anything or cope with the day to day of life.

I’m also wondering how I can possibly do my bit of sorting and sifting Mum’s possessions and organising the house if I’m working – not that I feel I could drive there or lift anything anyway. I’m feeling useless. My doctor however laughed at me and said he didn’t ‘do sicknotes’. I was a little shocked but didn’t even have the energy to question this. He then insisted that I had a flu injection to help with my immunity whilst I’m in and out of hospital. As I was leaving he handed me a note and laughed – I looked at it and he told me off for thinking that I would only need a couple of weeks away from work if I was facing the treatment he knew was already booked in. He then said he’d signed me off for two months and even that would be reviewed after the results were in from the next operation.

This made it all so very real that I wouldn’t be up and about quickly. I think I’d thought I would be so to be ‘signed off’ for such a long period of time was yet another shock or reality check. I’m devastated and once again call on Millie’s support and call in for a cuppa/lunch.

Millie had also been doing research on the internet and had seen a lot of the same articles but also some others, so it was good to compare notes. It was horribly obvious that we were both skirting the worst scenarios though and eventually we got there. talking round and round until eventually I asked Millie to help me ensure that my wishes were looked after ‘just in case’. It was, though, a relief to then talk candidly about the articles and information that we’d both seen but avoided talking about as it was too scary. BUT I do need to remember that I need a balanced view and that not every treatment, operation, eventuality is for every person and indeed if I’m armed with all the facts and figures, I can take some control of my own treatment and proactively control my future… because there is one!