Decisions, Decisions ...

Decisions, Decisions …

So it seems the bits of this whole breast cancer thing Andy and I are finding interesting may be different to the ones others find interesting.  Ok … so that gives me a few choices in writing this second blog.  So, I’m just going to split it into two bits, and perhaps each person can just read the bit they find interesting, and leave out the rest, and thus anyone who wants to keep up with the journey can do so without too much hassle.  Actually, once again I’m writing after the event because it’s complicated to keep up with experiencing all this, and writing it down simultaneously.

I guess that brings up the point that some of the detailed stuff just doesn’t make interesting reading – it’s pretty vital when you’re going through it, but a bit tedious otherwise I feel.  So, I’ll try to provide outlines, but all of us actually having the experience know there’s plenty more – some plain gruesome, some just plain funny.  As said before, I’m genuinely finding a lot of what we’re learning fascinating from all sorts of points of view.  To that end, I’m going to add in relevant information links where it seems a good idea, so anyone who really wants more detail can find it easily.  Just ignore them if that’s not you.

… and a boring note.  Everyone seems a bit freaked-out at the whole ‘blog’ thing, finding it difficult at first.  I know because I’m the same.  It seems you all do ‘Facebook’ and have got to grips with that.  I haven’t at all, because all the linking everyone to everyone just leaves me baffled.  I’ve found the ‘blog’ ok to write because to me it just feels like writing an ‘open’ letter and I don’t find that too scary!   So, most of you following this blog are doing so privately, not publicly.  No problem – I’m amazed anyone has read it at all!  So I’ve taken the ‘Followers’ thing off the blog, and will just send you all an e-mail when I update it to let you know.  Hope that’s ok with each of you!

Ok, off we go on this month’s journey.

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Decisions, Decisions …

How and why we ended up with chemotherapy …

March 2012

“…  Firstly, there’s a whole thing about how we (I’ve) ended up having chemotherapy when that was initially ruled out of the equation … “

So, already we’ve had several big learning points along the way.  One is that each time the professionals provide a timeline or path forward it’s liable to change further on - perhaps inevitable since this is a journey.  All the professionals emphasize that everything they do is just balancing and re-balancing risks at each point.  Also, that there are no paths / treatments, without risks.  Ok, that seems worth knowing.

Prior to my successful surgery results back on 1^st March, the professionals said no chemotherapy required.  Fantastic!  However, prior to our first meeting with my oncologist on 15^th March this changed, and we found ourselves sat with him unexpectedly discussing chemo.  This meeting in fact focused on risk of future recurrence of the cancer (called ‘distant recurrence’) which chemo exists to try to prevent.

Andy and I had already figured out according to our researches, this is the biggest issue that people apparently often don’t discuss with their professionals at all, but do in fact worry about for the rest of their lives – with good reason it turns out (more in the next blog on this whole thing).

So, there are loads of aspects to this.  The oncologists starting position was (with approx numbers):

• 48,000 people a year receive a breast cancer diagnosis in the UK.  Of these 37,000 are ER+ breast cancers (oestrogen receptor positive - that’s mine).  25,000 will automatically need chemotherapy (the cancer has already spread, and without the chemo would spread further - so, a simple decision for most – bring on the chemo and live!)  The other 12,000 people a year in the UK receive my exact same diagnosis (early onset – it hasn’t spread yet – and are borderline).

• Of these 12,000 my oncologist says 9/10 people will not benefit at all from receiving chemo, and could even be considerably harmed by it.  We query then why give it?  His reply is because it will save the life of the 1/10 patient.  Sounds logical - he also says that is his view precisely because he is not able to tell which of his patients are in the 9/10 camp, and who is the 1/10.

• Of course, that made Andy and I wonder if there is a way of finding out who is in which camp.  Well, wouldn’t you wonder just the same in this position?

• So, out comes Andy-the-ace-researcher again, and lo-and-behold he finds a Telegraph article by Stephen Adams on exactly this.  You can find out which camp you’re in!  If you’re interested, his article is at http://www.telegraph.co.uk/health/healthnews/8837132/New-breast-cancer-test-could-spare-thousands-chemo.html.

• The article splits my 12,000 differently and says 8,000 could benefit from a diagnostic test used routinely in the USA called ‘Oncotype DX’ that uses your levels of four proteins of importance to ER+ breast cancer to tell you exactly this (i.e. your risk of recurrence expressed as a number).   For those interested the Oncotype DX website is www.oncotypedx.com

• BUPA has been routinely using this test since 2010 (the English version is ‘IHC4’).  The NHS hasn’t committed to it yet, and is carrying out further research in the UK right now.  In fact NICE (National Institute for Clinical Excellence) are currently discussing a UK roll-out (maybe in the next year), saving patients unnecessary chemo, and the NHS a fortune in wasted treatment.

• Back we go to the oncologist on 22^nd March to say what does he know about this ‘Oncotype DX’ test?  Is it any use to me, and if so may we have it please?  His response is cautious, it exists exactly for patients with my precise diagnosis, and he knows everything about it, but he’s waiting for UK research and NICE to come to a conclusion to guide all the oncologists across the UK.

• Also, people don’t usually ask for it (only 1 patient in the last 2 years), and more to the point the NHS doesn’t pay for it yet.  So we counter with we’ll pay and can we have it?  He says yes ok, if that will help us make the decision whether to go for chemo or not.  Great – he sends my sample tissue to the USA, and we wait the 7 to 10 days it takes to get the results.

• Can I say a thank you here?  On learning we had to pay several of our friends and family offered to pay for it for us.  Not necessary, but wow – really WOW, so, without naming names, we would like to say THANK YOU and THANK YOU and THANK YOU and THANK YOU.                 We are Sooooooooo lucky to have you – you are all irreplaceable, and we know it!!

• Interestingly, my oncologist probably did find sending off for the ‘Oncotype DX’ test for us a bit of a nuisance to start with, but ended up saying it’s been an interesting learning experience for him too.  We’re only too glad to assist the NHS with their training costs I’m sure!  The good old NHS is sure doing plenty for me at present!

• Back to the ‘Oncotype DX’ results.  Obviously, we’re hoping it will come back and say you’re in the 9/10 who won’t benefit from chemo, so don’t do it (not benefiting here is defined as you are at very low risk of the cancer recurring in the future).

• NO chance sunshine.  It comes back on 10^th April – you are in the high-risk category of future recurrence.  Ah well – at least we now know there is a point to going through what’s to come.  Chemo starts two days later on 12^th April.

Treatment Arc …

The Point of the whole exercise …

January to October 2012

“ … Secondly, I think it’s quite interesting to understand the whole treatment ‘arc’.  Of course, I can only describe here my own treatment, as everyone’s varies considerably according to their own situation and cancer type, but I am going to try to capture mine because I think it’s interesting, even if it is just one example of very, very  many …”

My NHS treatment a while back was planned as two main stages, across three months:

Surgery in February 2012, followed by 3 weeks radiotherapy, and no chemotherapy required.  All completed by the end of March 2012.  Plus, eventually, 5 years of tamoxifen of course, but we’ll deal with that when we get there.

Now it’s a bit more extended, to three stages, across approximately nine months:

• Surgery February 2012 – localized treatment, been there, done that, all clear.  Marvellous.
• March 2012 was for rest, recuperation, and onward decision-making.

• Next up is 6 cycles of chemo April to August 2012, each three weeks apart, so spread over eighteen weeks in total.  For those who want dates:
• Cycles 1 to 3 : the first three were on 12^th April, 3^rd May and 24^th May – all three completed now, which means I’m half-way through already!  Yes!
• Cycles 4 to 6 : the next three chemo’s are due 14^th June, 5^th July and 26^th July (this last cycle ends 15^th August).

• Then approx. 3 to 4 weeks for more rest and recuperation (mid-August to mid-Sept).
• Onto 3 weeks of radiotherapy (mid-Sept to early Oct).
• And finally approx. 3 to 4 weeks recovery following that (that’s October taken care of).
• Which, surely, means I’m all done by the end of October 2012 with luck.
• Good, marvellous, thank God there’s something to look forward to!!!
• All looking good for my November birthday and Christmas.  Yippeeeeeeeeee.

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Just to say to round off, our whole life is not consumed with cancer at all at the moment.  True, it’s ever-present, and impossible to ignore on any level at all, but then again all of the rest of life continues as normal.  Perhaps just with a bit better planning required.

Loads of good stuff happening.  Birthdays surround us, therefore so do celebrations.  The biggest upcoming at present is Joy’s 80^th (Andy’s Mum) so that can only bring good stuff and plans with it.  Summer is here at last – I’m even getting compliments on looking well due to the first outings of newly-browned legs and shorts combinations! (can’t be too bad).  Light nights at last to make us (that’s just me really I know) forget the horror of winter cold and dark.  We’ve got the first couple of b-b-q’s under our belt now – always heaven as far as I’m concerned.  A couple of weekends ago we did a sudden-escape-to-Liverpool because I was really, really well and we had the most fun ever!  We hadn’t been before – who knows why, because it’s absolutely ace (I am receiving commission from the tourist board for this, never fear).  Anyone who hasn’t gone, and feels in need of some silly fun, try the “Yellow Duckmarine” for size – I haven’t laughed so much for ages.  Andy’s getting in an odd bike ride at last, or walk, or trip to the pub with friends to keep his sanity levels up.  My Mum’s successfully through yet another week in hospital.  So, loads of good stuff along with the rest!  And actually loads of lovely time with lots of you lovely folk, lazy lunches, games and good visits and outings in general

… Thank you all.

See you in the next blog, if not before.