I was thinking that I didn’t have anything of note to write today but then it all changed.  I heard back from Cancer Research UK who kindly directed me to the website and said the instructions for joining the trial were on there… hmmm wasn’t that where I got their email address from in the first place?

This was shortly followed by an email from one of the clinicians (who I’d stalked by email – hmmm I am getting good at this stalking thing!) who has sent me the patient consent form and said if I wish to be included she will call me in the next couple of days to discuss.  The trial is not into how to manage a tumour or the most effective surgery or treatments as I had thought but “We are studying phyllodes tumours in order to identify genes that may be important in the development of these tumours and to try and understand why some tumours recur and others do not.”

My biggest fear now that I’ve undergone two surgeries is that the tumour may recur and this will be an annual event.  Anything, I can do to help the clinicians identify why these occur and why they recur will be fantastic.  The trial doesn’t end until 2010 and the data will take some time to decipher and report upon but anything I can do to help future phyllodes survivors the better.

Oh and just one final little notelet but for those of you a little squeamish, look away now…

I have a little plastic stitching protruding and decided this morning to pull it… I mean surely, it must be stuck now… but it just went on pulling and puckering, perhaps it’ll be one of those nightmare moments when you get a lose thread and pull it only to discover that it unpicks all the stitching leaving you rather drafty!  I’ve left it well alone for now – still it’ll be somewhere to attach the nipple tassels or perhaps in a festive mood, somewhere to hang the Christmas baubles and lights!

I was thinking today about other aspects associated with being diagnosed with breast cancer and the indignities that go along with all the physical aspects (tests, poking, prodding, biopsies, blood samples, surgeries, drains, pains and stitching) is what goes on in our heads through our journey. I’ve spoken to a few ladies who have been told by medical teams that they have or may have breast cancer. All of them (including me) said that there were two main thoughts that spring to mind instantly; will I die?; and if I live, will I still look like a woman?
Certainly, in my case, I’ve asked myself about the first question (‘will I die?’) and pragmatically worked through the ‘what if’s’ associated with that but disregarded it as I’m bugga’d if this is going to beat me!

The second question however keeps playing over and over, ‘will I still look like a woman?’. Probably more accurately for me, will the lack of breast (not so far!) or remaining disfigured reduced breast make me less attractive. In all honesty I don’t know the answer to that and I guess only when I meet someone new or get back in the real world of dating will I know. At what point do you talk about having had breast surgery due to cancer? How do you bring it up? Is there any social etiquette on how/when to do this?

I had thought about what I would do if a mastectomy was the only option and then if I would have reconstruction. For me, the conclusion was that I wouldn’t have reconstruction, the reason was simply practical – if I had a recurrence how would they find it behind a false implant? Given the speed at which phyllodes tumours grow it may have grown into the chest wall cavity before being detected – it’s partial to soft breast tissue so wouldn’t grow into the implant. If I had a reconstruction using tissue from my tummy or thighs, again the phyllodes would grow backwards into the chest wall cavity – which although the tissue is softer would be easier to detect than an implant but nonetheless there is risk associated with it. With both forms of reconstruction the detection may be slower and I would prefer to have a prosthetic breast or to remove the other breast to even me up than face potentially missing out on any detection of a recurrence. I also figured that, although I’m never been a tattoo fan, I’d have to have a cool tattoo along or over the scars… perhaps a climbing rose or wisteria… maybe with ‘where’s Wally’ or ‘Gromit’ (finally I could be Wallace & Gromit) in there for a giggle… hey, if I’ve gotta do it, I’m going to make it a bit mental!

There is an enormous amount of support and help to get us to and through surgery but once that’s all over, we’re left with our thoughts. We don’t just beat cancer, we’re also considering any recurrence and dealing with the after effects of the surgery, anaesthetic and physical scars but in addition we consider what this will do for our femininity and fighting for our rights to have a feminine form.

One thing I do know (and this is to you all) is if you are ever in the position of being a partner, lover or friend of someone who is going through or has gone through breast cancer surgery, please remember that the person they are is NOT determined by their breasts! Take time out to remind them that you still love them or care for them and (if appropriate) that you still find them attractive. We, breast cancer survivors, have to go through so much physically and mentally that to know that just because we look in the mirror at ourselves and see only the worst, the scarring, the reshaping, the missing, the bruising etc, it’s important to know that it doesn’t matter to you.

Whether the survivor is your mother, your sister, your girlfriend, your lover, we all need to know, to be told, to be touched and to be reminded, not in a checkbox sort of a way but in a caring way that we are, first and foremost, female, feminine and a sexual women… so… once in a while…

It’s not just about the cancer… it’s also about how our lives and bodies have changed.

• Clear margins in regards to a phyllodes tumour are a clear 2cm margin – much larger than a normal breast cancer.
• Regular breast cancer travels via the lympthatic system -v- phyllodes travels via the blood vessels.  (question – by carrying out tissue reconstruction could this mean that the phyllodes tumours set up new network of blood vessels for any rogue spindle cells to travel to and metastase)
• The mitotic count is imperative to get from pathology/histology to establish how active the tumour is/was.  The hore active the tumour the higher chance of recurrence.
• Check also whether it had hormone positive receptors.  Some believe that phyllodes are hormone negative but often they turn out to be ER+/PR+.
• Radiation thereapy is generally carried out only once the wounds have healed – radiation can slow down the healing process.

I’m not sure which of you said, “it sounds like you’re out of the woods but there’s still a few saplings to go” – I think you’re probably spot on.  I would love to be able to sleep easy knowing that the full histology report is in and that the medical discussions on Tuesday had taken place.  It’s odd to think that I’ve been given the good news about the phyllodes tumour and margins having been obtained but that there’s still discussion about possible surgery, treatment and prognosis particularly due to the additional DCIS discovered.  I am however glad that because of the DCIS yet more medical people will become aware of phyllodes tumours.  I’m also glad that I have been treated in a teaching hospital that is also part of the Royal Marsden which again, I’m hopeful, will mean that there may be future doctors aware of phyllodes tumours and perhaps intrigued enough to research them more.

For me – it seems Tuesday afternoon is a very long way away.  This is when I should hear from my nurse following their group meeting.  She will either advise me on the phone of the conclusions made at that meeting or to call me in (if need be) to discuss further with my consultant.  I’m also awaiting Sutton hospital’s call setting up an initial appointment about radiotherapy, planning how much for how long etc.

I feel as if I should be celebrating but a little cheated at not really knowing if I’m clear of it all or what can be done to minimise any recurrence in the next few years.  There have been a number of ladies I have met through this journey that have had recurrences which has meant further surgery or treatment, some within the first few years and others some 7 or more years later.  As the phyllodes tumour that I had was malignant (they can be benign, partial malignant or malignant) there is, of course, a greater chance of it coming back.  I know, and you often read that cancer survivors (of any cancer) are always aware that it may come back or that nodules have metastased elsewhere in the body – I guess I always will be looking out for signs.

Today I’m going out… and not to the hospital!  Whoohooo, Millie and her sister are taking me for a brief trip shopping and lunch.  Let’s hope that being upright and wandering around the shops won’t be too uncomfortable as the stitches are still healing and the tissue still bruised and repositioning.  Hmmm shopping and lunch – that sounds like a normal thing to do… I love it!

PM – Ok so shopping may have been a bit adventurous yet.  Lasted about 30 minutes before lunch and a sit down  Then about another 30 minutes of wandering and browsing before I apparently looked rather pale and interesting and was chauffeured home for a snooze.   But at least I left the house and no one asked to look at or prod my boob!