3 more sleeps until I hope to hear from the hospital following their group meeting and receipt of the full histology report.  It’s funny (and boy have I had to find a funny bone or two through this journey) that once again I’m waiting for results or news.  I keep running through the last meeting with my consultant where he started the conversation with ‘I don’t believe you need any more surgery, at this time’ and went to to discuss considering mastectomies ?!?  Millie and I exchanged confused expressions and listened intently to him then telling us that they had found this ickle DCIS (albeit low grade) and outlined what the course of action would be/have been, if they had found it on its own merit rather than as an aside to my phyllodes tumour.  It wasn’t until we got home and researched further what a DCIS was and how it is treated (and whoopi-do there is information on this on normal C websites!) that the conversation and the necessity to discuss mastectomies fell into place.  I was however assured by his comment that he believes I don’t need any further surgery at the moment.  The very thought of going through it all again fills me with dread – I’ve done it twice and want to get off this fair ride!

But as ridiculous as it sounds, whilst I’m hanging on to the positives (that they believe they have the entire phyllodes tumour and got a clear margin), there’s that nagging in my mind about the DCIS, if they got it all and what this really means.  You see if they had found that on its own, MOST people would have surgery to remove it and a clear margin to ensure that it didn’t turn nasty.  However my thinking is that I’ve had enough and am going to be closely monitored over the next couple of years so that IF it should turn nasty they will know about it before it takes hold… but is that just me trying to avoid more surgery.  Is that what they will recommend when they get the full histology report back and the professionals have seen all the medical info?  I don’t know.

There’s also the question of to radiate or not to radiate.  As I said earlier there are two schools of thought as to if radiation therapy will reduce the risk of recurrence of a phyllodes tumour.  For obvious reasons I want to reduce the risk of recurrence by as much as possible however there are risks to having radiationtherapy in itself.  Would radiationtherapy assist with nuking the DCIS also or might it irritate it, if its not been totally removed?  My mind’s a-whirling when I should be celebrating that they say they’ve got the phyllodes tumour, but I can’t quite yet, or not all the time.

I also know, sensibly, that my team at the hospital will give me the best possible advice on more surgery or future surgery and that when I have my appointment with the radiation oncologist they will also be able to advise on the risks involved so that I can weigh it up but I can’t help but wonder when it will all be over…

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!

Brief update today as it hurts not to be curled up in a ball on my side… the lovely side affects of the antibiotics so have been kept awake by cramps and raging hot flushes all night – mmmm nice!  However the infection does seem to be disappating slightly (at midday) so they seem to be doing what they’re meant to do.

Tomorrow I get to go back to the hospital for the test results of the lump – hopefully will be saying they have got it all and clear margins and we can then work out what treatments required to reduce any recurrence.  They can also have a look at the infection!

Nigel collected me at 6.15am following a sleepless night and delivered me to the hospital in good time by 7am.  He didn’t however leave me at the main entrance this time, insisting that he stay with me for as long as possible – so I didn’t escape out of the back door or locate the fire escape!  Everything seemed so quick, visits from anaethesist, consultant, trainee doctors etc etc and before long I’m in the operating theatre having the canula inserted.  As per, I didn’t even get to count to 1 before I’m being woken up in the recovery room and back on the ward for elevenses.  Although I didn’t know what they had done, I did have a drain which meant that I knew there was a cavity – a tube is attached to ensure that blood and fluid that might build up in the cavity is drained away.  Ironically when I was for Op 1, I had been very smug about the fact that I hadn’t had a drain – serves me right this time round!

I managed to get a few hours sleep during the day which I was so very grateful as I had an incredibly uncomfortable night.  My drain was pulling on my wound and didn’t feel right at all, I had sharp pains in both breasts throughout the night and to add insult to injury ended up having an ultrasound at 1am as my tummy was bloated and a catheter finally being successfully inserted at 3am.  Not a great night and made slightly more anxious about whether I was going to be discharged tomorrow or need to spend a further night in hospital.

We were however in a prime spot for the fireworks and yours truly had a window-side bed, so a perfect view over London for Guy Fawkes night – at least a little compensation.

I truly hope this is the end of it and I don’t have to go through another operation… let’s hope the removed tissue shows clear margins.

So much for prescription sleeping pills.. wide awake nice and early but it’s a gloriously autumnal day so shouldn’t grumble too much.  I just love it when the autumn colours are lit beautifully by sunshine and the air is cold and crisp.

I ‘published’ this site last night and told friends and family of its existence.  I’ve received such wonderful messages of support for the upcoming operation, enormous support for doing this site and acknowledgement about my honesty and openness in the content.  Thank you.  Sadly I’ve also learnt of friends around the world (who like me have been quiet and off the radar for a while) and who have been through or are going through treatment for breast and other cancers.  We’re all amazingly strong people and I’m sending my love and support to them also.  Right, now to work out what to pack for hospital and convalescence.

11.30am – The hospital have just called to say ‘be prompt, they want me to be first on the surgery list’… is that a good thing?  Think the consultant starts ops at 9am, so good thoughts and well vibes then please…

Am now installed at Millies, room looking georgous and comfortable (better than any 5* hotel!) and 12 hours to go until I leave for the hospital.

Will leave you now and update you when I’m back home – Facebookers, I’ll update you there via my mobile.  Gosh though I am soooo lucky to have such great support – if I could cash in all the fantastic messages, and bottle all the good vibes and energy, I would be the richest person alive.  Thank you.  xxx

“Hello All.

Some of you may know, others may have heard rumours about me, why I keep cancelling meet ups, am not in work etc etc, I’ve put a little story online…. I’m also hoping this will help others find answers or reach people to talk to that are affected this rare cancer, malignant phyllodes tumour. 

http://www.annawallace.co.uk

Look forward to being out partying soon… keep sending through the invites please!

Keep well and safe

Anna
Xxx”

I woke this morning and noticed that my pillow was wet.  I’d obviously been crying in my sleep again.  It’s a toughy at the moment, trying hard to look on the positive side in that they WILL get the tumour and a clear margin and I’ll then be fine (subject to post op radiation therapy and regular tests).  Although I am incredibly fortunate to be able to see the positive in almost every situation and have a giggle at myself when I get upset, I’m struggling with this as the operation looms and more, of the same, questions are rerunning in my head.  Should I just elect for a mastectomy to maximise the chances of it’s clean removal?  If so, would I have reconstruction surgery?  Could I cope without a boobie?  If I didn’t have it reconstructed would I (should I) remove the other one too again reducing the chances of it coming back in the other breast.  But I’m still young (ish – I’m 41 going on 4!) and my boobies are important to me… I’d need a whole new wardrobe (which I can’t afford)… I love my lingerie… I’d look so very different… and I’m single… could I find someone to love me who’d want to see me naked?… BUT then again there’s heaps that I could do without boobies that I haven’t been able to do with them… like going running (they were always sooo painful when I ran or did aerobics type classes), even Pilates when I needed to lie on my front was painful… But then again, would I still feel feminine without one or both of them?  OK, so today you’re really getting my inner ‘mares on this one.  Gotta be positive.  The next op will be the end of it and they’ll get it all.  I don’t need to worry about being lopsided.

Right best get up and do some cleaning.  Some of my colleagues are coming over to see me for lunch.   Hmmmm will they bring Percy Pigs with them?

Lovely to catch up with my colleagues for lunch but am now exhausted again.. a little nap me thinks.