21 scars and all out of love for sloth

Just when I thought it was reasonably safe to put the operating theatre behind me…

2 out of 4 news scars, 21 in total

a bunch of symptoms showed up with plenty to contemplate. Upper right quadrant pain before breakfast, at random points through the day and resistant to over the counter pain-killers. An intermittent feeling of fullness beneath the ribs or a hard area towards the sternum, with pain, sometimes radiating to the right shoulder blade. After a run-in with grade 3 HER2 positive cancer, metastases couldn’t be ignored. The only way to find out was further tests. At the end of last year yet more blood tests and another ultrasound ensued. There are protocols around ultrasound and the sonographer isn’t usually at liberty to say anything but on this occasion he was more forthcoming and said the liver looked normal. I guess he knew no-one wants the thought of liver mets hanging over them like the darkest of dark clouds.

The source of the problem was identified quite quickly and completely non-invasively: a large gall stone.

Fast forward six months and there are four new scars to add to the previous seventeen littered around my torso. Although these are small in comparison to some of the cancer-related scars the after effects of gallbladder removal (laparoscopic cholecystectomy) have been more painful and recovery seems slower. Perhaps it’s because my body was already a human pin cushion and there’s only so many holes that can be made through a single belly button without repercussions? Strangely the scars in the area where the gallbladder used to be don’t hurt and the one in the midline, just below the sternum, is barely noticeable but the belly button and whole lower abdomen is another story. Maybe that’s because it’s been used before for other surgeries or maybe it’s because this surgery involved pumping carbon dioxide into the area leaving my whole abdomen distended like the alien in alien autopsy. Almost a week on and it is still out of shape.

In the recovery room where it took some time to recover (and was a little worrying at first) they showed me the offending gall stone. Just one but of sizeable proportions and certainly enough to have caused all the previous symptoms. The consultant came to visit on the ward and said “it was nasty in there.” I’m still not sure exactly what he meant and didn’t have the heart to tell him it felt pretty nasty living in here post-surgery too. It’s the one time when I’ll gladly declare opiates have been my friend.

Since parting company with the gallbladder and its unwelcome occupant all the unpleasant feelings and malaise thought to originate from there have gone away. Early days but with luck those problems are gone for good. As for the scars, they are healing well. (That purple stuff is medical super glue and it flakes off in 5-10 days.)   One of the worst things about surgery is recovery. It can’t be rushed which means being careful, nothing strenuous and giving things time. But time is precious and aside from piling on pounds when I sit around, every day spent in inactivity feels like an opportunity missed. It’s frustrating. Twenty-one scars in a 30 x 50 cm area is more than enough so hopefully this surgery is the last. Precious days are passing and I’m all out of love for sloth.

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Scar Tissue, Tattoos and “Are we there yet?”

“Are we there yet?” The question anyone making a long journey with a small child is sure to have heard. You don’t expect to hear it asked in many other situations but breast cancer is one where the thought occurs even if the words remain unspoken.  Pre-diagnosis I heard many media stories about how we no longer need to be afraid of  breast cancer, how treatable it’s become and how many more women survive these days. Bearing in mind none of the women in my family have survived I try to look on the bright side and hope these stories are all correct. I’d heard that treatments had moved on, surgery was less debilitating and with the help of pink ribbons the world was now full of courageous cancer warriors – previvors, survivors and thrivers.

Until I was faced with aggressive breast cancer, a type that brings a high propensity to metastasise, I had  not heard that diagnosis, surgery and treatment may well take over a year. I had not heard that diagnosis itself requires multiple steps which can (and did) include many false starts, lots of potentially conflicting information and significant additional stress. Post diagnosis I had not heard that surgery and surgical revisions, follow-up treatments and regular check-ups can extend for a minimum of half a decade – and that’s if you happen to fall into the ‘best case’ scenario.  Nor had I heard via any popular media sources that in the case of those  diagnosed at Stage 4 (or the 30% of us who go on to develop mets in spite of treatment), the journey is never complete. Check-ups, treatments and various surgeries just keep going until we ourselves come to an end. “Are we there yet?” takes on a whole new meaning in this realm.

My own breast cancer journey has been tracking along for over three years now. We are still moving forward yet still unable to answer the “are we there yet?”  question.  Major surgery is complete and I am in remission as far as we know but only time will tell if that will remain the case. Meanwhile there are a number of minor things to tackle including surgical re-work to address unintended consequences arising since the original reconstructions.  When these revisions happen depends on waiting lists, beds and Government spending reviews but in the meantime there are highly recommended ‘finishing touches’ designed to help me believe that life is as it should be.  This involves the creation of an illusion of a more normal appearance, but in truth there is nothing normal about any of this.

It is at this point that the scars and tattoos become relevant. Post-surgery, chemo and Herceptin I am the owner of a Barbie-esque chest that is almost as unnatural, shiny and pink as Barbie herself. Were it not for the scars running across the front of mine (and the vampire bites – double drain scars that adorn either side of my rib cage) my torso might be that of a plastic toy. Fortunately the vampire bites are not obvious and there’s little to be done with them in any case. The same is not true for the front facing scars and on top of all this (no pun intended) is the small issue of absent areola/nipple complexes. You won’t be surprised to learn that this tends to give the game away.

At first I didn’t think the whole Barbie/nipple thing bothered me. I was glad to be alive and still am – glad and alive. I didn’t plan to show my chest to anyone other than the person I married so missing in action areolas and nipples felt like no big deal.  But having lived with pink plastic mounds for three years I’ve come to realise the absence of those oh so common breast adornments and the obvious scars that took their place serve only to remind me of things I’d rather not dwell on.  Additionally there’s the small issue of any activity involving communal changing rooms, taking one’s top off or the dreaded but inevitable accidental reveal. Being an outdoor type that’s easier to achieve than you might at first imagine.

So after much deliberation I took my consultant’s advice and engaged in the process of additional fakery – to help disguise the fact that both breasts are completely fake.  A fake to hide a fake is pretty clever stuff but in real terms it consists of multi-pigmented tattoos designed to give the appearance of an areola/nipple complex. There is no need for more surgery to reconstruct fake nipples and as they’ll never be or behave like the originals I couldn’t see that they serve any purpose other than being there.

As with all things breast cancer the tattooing procedure is a multi-stage process and requires more than one treatment. Before commencing work the nurse tattooist gave me some anaesthetic cream. This has to go on an hour in advance in the hope it will numb the area.  On reflection I should have realised it wouldn’t be terribly effective because the same stuff is used by my dentist and never works. I normally end up with multiple doses and have to wait much longer than normal before it kicks in. So the tattoo process was not pain free and although it was reasonably quick it had me wincing and silently chanting ‘I hope this is worth it.’  The nurse did offer to stop but when you’re a third the way through that doesn’t seem like a viable option!

At the end of the process there was some blood. This was followed by more bleeding and weeping afterwards.  It’s fair to say that the area was quite sore for a few days and a little tight and swollen.  Scabs formed then became itchy and began to fall off. I left them alone because picking would cause pigment loss and possibly lead to an infection.  About a week out from the tattooing process the scabs were all gone and the resulting pigmentation is reasonable if patchy in places. This is why the procedure requires more than one attempt.

Looking closely at the scar tissue it seems the pigment struggled to take in the sharp edges of both scar lines. Incidentally this area was hyper-sensitive when the tattooing took place.  Peering less closely and looking from a small distance the scars themselves are much less noticeable and hidden by something that passes as an areola/nipple complex.  Although this is the first attempt it’s probably good enough to fool anyone who might catch a glimpse in a communal changing room – as long as they don’t stare!

The next tattooing episode will happen in about 6 weeks time when the skin is properly healed and the big question is… Is it worth it?  On balance I think it is. After breast cancer nothing is ever the same so something approximating normal is about as good as it gets.  I now know what to expect during the next round of inking and will slap the anaesthetic on well in advance. Once the soreness and scabbing subside I can look forward to having two very respectable forgeries in place of the torso of a badly treated Barbie doll.

I had to think about this long and hard because I am tired of hospital visits, surgeries, re-work, worry, stigma and prejudice. But my consult (who is a miracle worker as well as a thoroughly lovely lady) was right. Looking more normal is helping me feel more normal and that is the ultimate placebo effect.  If you’ve had surgery and are thinking about areola/nipple complex tattoos the following articles may be useful. Nancy’s post gave me the inspiration to try this for myself and like Nancy I am happy with the result

The Oncologist

Tomorrow I’m heading back to see the oncologist.  A quick recap: he is studious, often serious and I was told some people find him rather terse. He also came highly recommended on the basis I could cope with a scientist who holds a passion for his subject, has considerable clinical trials expertise and presents the facts in a sans-sugar-coating, say-it-as-it-is kind of way.  It’s true he wouldn’t be everyone’s cup of tea because small talk and social pleasantries aren’t his thing. I knew I could live without those but the same could not be said for a well-constructed third generation treatment regimen designed to tackle very aggressive HER2+ breast cancer.

When I was in active treatment I made it my mission to find some way to make the oncologist laugh every time I saw him.  Despite the various cancer shenanigans and associated torments I managed to retain at least a smidgen of my naturally playful, sometimes mischievous (in a harmless kind of way) spirit. So tomorrow I’ll be in his office finding another way to make the man who averts death smile and laugh because let’s face it, 12 hours a day 5 days a week managing various forms of cancer is hardly fun, even if your success rate falls in the upper quartile.

I haven’t been back to the hospital for some time now and if it weren’t for the follow-ups I’d avoid going back there at all costs.  It’s the place where my life switched from relatively stable to completely FUBAR in a matter of moments. It’s the place I associate with a tranche of memories I’d happily erase if permanent amnesia happened to be available in tablet form. It’s a place where the staff are brilliant, my treatment was excellent and as far as I know all traces of the mutant cells terrorising my body were eradicated. Unfortunately it will always be the place where cancer and me were forced to become far too familiar with one another. That acquaintance lasted much longer and caused far more damage than any of us is led to believe so I might just have to strangle the next person who says breast cancer is an easy cancer, the best kind of cancer or anything that remotely infers treatment and recovery is a walk in the park. Oops… I lost my playful spirit for a moment there.

Thankfully my oncologist chose to be an oncologist instead of an actuary, a computer programmer or an astrophysicist. For that I will be eternally grateful. For cancer I will not.

It wasn’t an accident…

 

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Someone I used to work with died last week. We weren’t close and hadn’t kept in touch but it  was still sad and shocking to hear the news. He was young, super fit and healthy just a couple of years back when we worked together. A clean-living triathlete.

When I found out I thought maybe he’d been involved in an accident, some kind of traffic collision. In the city it’s one of the more common causes of premature death. Or maybe one of those completely out-of-the-blue heart conditions, the kind that take people during marathons and football games.  In the moment between hearing the news and hearing what happened, an accident is what I expected to hear.

It wasn’t an accident and what I’m about to say will sound strange. In spite of the trauma, an accident might have been easier.

He was diagnosed with lymphoma in July and spent the past few months in a hospice. Nine months from diagnosis to death. His world and that of his family undone in the space of three seasons; autumn, winter, spring. His wife and young daughter must be devastated and I can’t help thinking it’s really sad. Sad for him and sad for them. They’ll have some gruelling memories to deal with before the good ones find a way back in.

24 hours ago one of our news channels made a big deal of cancer survival rates. The report was positively beaming about 50% of people in England and Wales now living for ten years post-diagnosis. Cancer no longer needs to be seen as a death sentence is what the story said. The same story reported a one in two chance of living (dying) within 10 years of diagnosis as a vast improvement on the 1970’s position. Back then 24% could expect to live for 10 years.

News of a co-workers death from cancer in less than year just one day after this inappropriately upbeat national TV story seems hopelessly ironic. I don’t deny the numbers reflect some progress for the better, but I can’t shake the thought that creeping from 24 to 50% ten-year survival during the course of almost 45 years is extremely slow. Life threateningly slow. The kind of progress that earns a ‘must try harder’ comment on an end of term report.

It wasn’t an accident that we invented the large hadron collider, wi-fi, hybrid cars and protease inhibitors in the last 25 years. We verified the existence of dark matter and down-graded Pluto to a dwarf planet too. But when it comes to cancer we’re supposed to be pleased by a 50% ten-year survival statistic that’s taken 40+ years to achieve? It’s a statistic that means 50% of people, including my ex-colleague, still can’t expect to see their kids grow up, have kids of their own or spend time with their grandchildren.

Misguided, 10 Myths & Missing the Point

Those of us unlucky enough to be on the breast cancer merry-go-round know all too well that the Media has a strong role to play in raising awareness. It has an equally strong role in conquering a number of misguided, often serious misrepresentations of the truth.

Sadly much of the Press around breast cancer either sexualises or trivialises the disease by portraying it as an “easy” cancer from which we’ll all almost certainly be “cured” and go on to live long, healthy lives. (Myth 1).  A short detour into the land of all things pink and plastic is nothing more than a minor inconvenience for which we receive plenty of help and support (Myth 2).  Post-treatment we’re duty bound to be happy about our good fortune and can celebrate how incredibly lucky we’ve been since developing the “best” kind of cancer (Myth 3).  We’re cured (Myth 4) so can spend plenty of time flaunting freshly reconstructed, completely flawless (Myth 5) new “boobs” that are sure to be the envy of all our friends.

This quick, simple and largely painless path from diagnosis through surgery, neo-adjuvant or adjuvant treatment (Myth 6) and on into the realms of pretty-pink, happily ever after la-la land (Myth 7) is one I’m sure my friends with breast cancer all recognise and are, like me, so very pleased about. Breast cancer is a highly desirable form of cancer and of course we’d wish for it because it’s better by far than other types of cancer. We’re very “lucky” don’t you think? (Myth 8)

No. I’m sorry to disappoint but this is not a disease anyone should ever wish for.

Unfortunately the Media recently helped perpetrate another misguided appeal that misses the point about cancer by a country mile. An advertising campaign for pancreatic cancer helps further the myths that breast cancer, or prostate cancer for all the guys out there since breast cancer is an exclusively female disease (Myth 9), is a “good” kind of cancer.  It’s so good that it’s obvious we’d all chose breast, skin or prostate cancer given chance to select from the smorgasbord of available human cancers running rampage through our world. Those kinds of cancer are so much better for us should we feel the need to acquire some form of the disease (Myth 10).

Having lost a colleague and friend to pancreatic cancer several years ago I understand the stark reality of that particular form of this insidious disease. There’s nothing good about it and survival rates are low because it’s often discovered late, when locally advanced or already metastasized to other areas of the body. When diagnosed early the outlook for pancreatic cancer is often very poor and I fully agree that further research, better diagnostics and improved treatment regimes are all desperately required.

However I also have a long standing, close-up and personal relationship with breast cancer so will offer thoughts for those – including advertising companies and the Media – who might think it’s “easy,” “curable” or presents a “better choice.”  I urge you to consider the following then tell me that you’d wish to have breast cancer (or any other cancer that might be worth wishing for) if you’re given a choice:

  • You BRCA negative but you’ve lost at least five generations of women in your family to breast cancer, all before the age of 50. Each woman lived healthily pre-cancer, went through extensive and life-threatening treatment yet still developed metastasis within a few years of initial diagnosis… Will you choose to invite this disease into your life or the lives of those in your own family?
  • You never met your Grandmother, she died of breast cancer when your Mother was 5 years old. As a teenager you watch your Aunt (in her 30’s) go through surgery, radio and chemotherapy. A couple of years later she’s in palliative care, steadily succumbing to brain and bone metastases that eventually break her hip causing unimaginable pain for the last few weeks of her life… Does this sound like a better option than other forms of cancer?
  • At 23 you see your Mother endure surgery, radio and hormone therapy. She then faces surgery and chemo for secondary liver, ovarian and bowel cancer. You’re sitting at her hospital bedside, she’s encountered yet more side effects and as you talk a treatment induced blood clot drifts into her lungs. Panic ensues and you’re ushered away. Some time later, you’re unsure how long because your head’s spinning and your heart threatens to break through your ribcage, you hear the words “I’m sorry.”  In your final moments with your Mother she’s desperately gasping for breath and has time to realise something’s terribly wrong. Decades later that image, the noise and the violence of her death are indelibly etched on your psyche… Are you going to vote for breast cancer now?
  • You’re 41 have a teenage son and partner to support. You worked your socks off for over 20 years as you’re the only source of income. Despite regular screening you’re diagnosed with aggressive, invasive HER2+ breast cancer. Your life disintegrates in a matter of months, long-term friendships, your livelihood and your son’s mental health all dissolve. You undergo gruelling treatment for 18 months that causes persistent side effects and no guarantee of success. Your family knows this as well as you do…. Can you imagine finding any of this easy?
  • You begin rebuilding knowing you’re at high risk of recurrence in the next 3 years, need to make it past 5 years and even then the spectre of breast cancer can resurface with a vengeance 20+ years later. You avoid looking at your mutilated body, your confidence wanes and though your hair’s back your scars remind you that you’ll always be a cancer patient. The physical scars are ugly, the psychological scars are worse … Answer honestly, are you still going to wish for breast cancer?

I think you’re going to say no.

No sentient being wishes for hell on earth and that’s exactly what breast cancer is, creates and leaves behind.

Perceiving one form of cancer as more desirable, easier, curable or survivable is misguided. It completely misses the point because there is still no cure for cancer and that includes breast cancer.  It is not a disease to wish for under any circumstances and the sad fact is that men and women across the globe die of breast cancer every day.  As with most forms of cancer if it’s diagnosed late the prognosis is poor but even when diagnosed early (node negative), breast cancer can creep on via micro-vascular invasion taking hold in the brain, bones, liver, lungs or skin at any point.  Treatment is no less gruelling than for other forms of cancer and contrary to misguided Press stories success isn’t guaranteed. Statistics have improved thanks to increased awareness and earlier diagnosis but far too many lives are cut short, often young women in their 30’s and 40’s.  Irrespective of type, cancer is a complex illness and outcomes depend on a myriad of interdependent factors including age, genetics, chemical and environmental considerations most of which remain poorly understood. Geographical location and cultural norms also have huge implications for diagnosis and survival, something Doctors in many African and Asian countries know only too well.

It’s unlikely people like Claire, Cancer in My Thirties or The Sarcastic Boob would wish for breast cancer given any choice in the matter. My Aunt and Mother are no longer here but I’m 99.99+% certain it wouldn’t have made their wish lists either. Unsurprisingly I did not wish for it (it came anyway) and I would never wish it for anyone else. As a sentient being I know what a god-damned awful disease this is, what it does, its consequences and all the things it ruins, breaks or takes away.

Wishing for one form of cancer over another is sadly misguided, misinformed and missing the point. Happily ever after breast cancer remains a myth in too many cases so please think very carefully. A wish for breast cancer is not the same as a carefree, pain free, cancer free life. The treatments are very challenging and you may still end up with just a few months to live. The seven point truth is this:

  1. Cancer, including breast, skin and prostate, is a killer.
  2. There are significant outcome implications based on where in the world you live.
  3. Incidence rates are rising.
  4. We are all in need of a cure.
  5. Prevention must be our ultimate aim.
  6. Cancer research requires improved funding and continued support.
  7. Many more will die before cure or prevention become global norms.

Snowdrops in Fresh Pastures

Thoughts among the flowers

I love flowers.  All colours, all species, scented or unscented.  It makes me happy when I see buds on the plants outside the window because I know in a short time the garden will be awash with blooms.  I was lucky enough to receive some beautiful flowers recently so the house is surrounded by blossoms inside and out.  Flowers buoy my spirits simply by looking serene and picture-perfect, the work of Mother Nature at her very best.  If they smell nice that’s a bonus and the bouquets in the house smell delicious.

Though I am far from picture-perfect (and definitely not delicious) I remain reasonably tranquil, so much so that the newly qualified nurse who carried out my pre-op assessment was amazed at my lack of concern regarding tomorrow’s surgery.  She was a nice person, kind and empathic.  She frowned about my experiences, they corrupted her sense of right and wrong.  This happens to too many good people she said.  I reminded her cancer doesn’t stop to consider whether you’re good, bad or indifferent, it just happens and we have to get on with it.  My way of dealing with it has been to generate some space, a gap between the me who exists today and the me who went through all that crap.  The little distance I’ve created – as much as a completely different life, 4″ scar, bad joints, skin, nails and hair allow – is enough to categorise that as past.  She was inspired by my positivity and resolve.  I smiled.  I never had any other choice.

She asked if I was worried about another operation… how did I feel about a further invasion of femininity after enduring numerous procedures, major surgery and follow-up treatment for months on end.  I smiled again and laughed. At this point she might have considered I was a little insane, shrugging my shoulders like an unruly child who is yet to gain a sense of mortality and would pay it no heed when she did.  No, I am not worried and I won’t be a quivering wreck in the morning.  After all the things that have happened  there’s nothing much left to fear.

I know I should probably be just a tiny bit concerned.  Reason tells me so because there are always risks with general anaesthetic, infection and such. Surgery doesn’t bother me though – like breathing it will happen and I’ll know nothing much about it. As for femininity, it doesn’t feature as highly on my list of priorities as avoiding cancer, keeping clear of more chemo, or facing an imminent death.  With those things on my priority list femininity gets demoted into the ‘nice to have but not essential’ category.  I always knew there’d come a point in my life when my aptitude for logic and unerring pragmatism would prove useful.  Looks like I’ve finally found it.

 

No gloss or glamour just grit and determination

One of the (many) challenges of breast cancer treatment is the extraordinary change that happens to our bodies.  Not just the obvious changes – missing breasts, scars, hair-loss if chemotherapy is part of the treatment regime – but the unexpected changes too. Weight changes, skin changes, fluctuating energy levels, tinnitus, dry nails, altered metabolism, neuropathy. The list goes on.   The physical transformations are accompanied by psychological changes too; stress, anxiety, depression, PTSD.  Even the most relaxed people can find it difficult to stay permanently upbeat when the whole world seems to be caving in around them.

In spite of the sea of pink, in spite of all the hoopla about survival rates*  and in spite of the endless fighting-talk about cancer warriors, battles and survivorship there is no gloss or glamour about breast cancer.  This isn’t a Disney blockbuster complete with pink princesses, an assortment of vertically challenged helpers and a handsome prince who’ll undo the evil spell and save the day.  It’s more like a Hammer House of Horror production.  Zombies – rogue cancer cells resistant to initial medical intervention – might re-establish themselves in a multitude of locations anything up to twenty years after treatment, possibly even longer.

There’s no Disney is this realm.  All we have, all we ever really have is the grit and determination to make it through diagnosis, surgery, chemo and/or radiotherapy into whatever future lies beyond. That future is not the one most of us anticipate.   Regular medical check-ups, long-term side effects, living in a body that no longer feels like your own, mulling over the question no-one can adequately answer…Will it come back?  Gloss and glamour don’t see us through these things. Just as cakes in a French patisserie look so much better than those in my locale, underneath all the icing and decoration they’re not much more than eggs, sugar and flour just like the cakes in my local supermarket.  Gloss and glamour can sometimes help us feel better about ourselves  – when we look good/healthy/almost normal on the outside it allows us to more easily blend in with the rest of society. But it doesn’t take away what’s on the inside – scars, reconstruction (or not), pain (physical, emotional or both) and whispering niggles that pervade the recesses of the mind.

What if some zombies remained…

What if they reawaken…

What if they take control?

French Patisserie, gloss and glamour galore

French Patisserie, gloss and glamour galore

  It seems there is no easy solution. From the point of diagnosis we’re on the cancer conveyor belt.  For some of us cancer is slow-moving and discovered early.  Treatment, whilst challenging, typically doesn’t involve chemotherapy and its long-term implications for health – the risk of cardiac issues or a second malignancy at some point. There’s a very good chance people who discover a slow-moving cancer will go on to lead a long and healthy life.

For others the cancer is more aggressive, fast-moving and difficult to treat.  Higher grade hard-to-treat cancers tend to affect younger women and several of these sub-types have greater propensity to recur.  Many of my blogging friends have these kinds of cancer.  For others still, the cancer has already broken free of its original starting point via lympho-vascular invasion.  Many people are familiar with the concept of cancer spreading via the lymphatic system.  It also spreads via the vascular system – our blood.  Treatment for individuals with metastatic cancer is life long and although its possible to live with metastases for a number of years, the average is a meagre 26 months.  During the life-span of this blog – 7 months – I’ve already mourned the deaths of cancer blog companions.

As Dr Suzanne Herbert stated in the 2011 article ‘A pink ribbon race, years long’ (NY Times)

While the pink-ribbon campaign has raised awareness about breast cancer, it masks a relentless killer.  People like the pretty story with the happy ending…   you always hear stories about women who ‘battled it’ and ‘how courageous’ they were. Cancer doesn’t care if you’re courageous. It’s an injustice to all of us who have this. There are women who are no less strong and no less determined to be here, and they’ll be dead in two years.

Despite ongoing discussion about the usefulness (or not) or mammograms and the associated potential for over-treatment, the fact remains that our ability to screen cancer is limited and our capacity to predict whose cancer will metastasise is, at present, totally inadequate.  What is clear is that anyone who discovers inflammatory, or high-grade HER2 positive / triple-negative breast cancer will need treatment. These sub-types are not slow-moving and have a much higher propensity to break free of the breast to take up residence in bone or other organs.  Unfortunately hormone sensitive, seemingly small and innocuous cancers can also develop zombie-like characteristics, reawakening years after initial treatment concludes.

For many – possibly the majority – of breast cancer patients the future is by no means certain.  This disease can rear its ugly head again years or even decades later and there is no gloss or glamour when, as Dr Herbert puts it, a relentless killer is in our midst.  25 – 30% of breast cancers go on to become metastatic. Metastases are incurable.  Personally, I’d rather risk over treatment now than take a ‘wait and see’ approach.  In my case wait and see would severely curtail the remaining years I might expect on this planet. Cancer may go on to do that anyway but at least I and my loved ones know I went through treatment, lots of treatment, rather than leaving things entirely to chance.  If I’d relied on the clear mammogram result in December 2011, ignored the small dimple and almost impossible to distinguish mass discovered in May 2012 the chances are that by December last year the cancer would’ve set up home elsewhere.  Just twenty weeks after a clear mammogram, the cancer I discovered had already made its way into the surrounding lympho-vascular system and sat 1mm beneath the skin.

I support the view that women shouldn’t be afraid of their breasts, that confusion exists about the implications of  DCIS and whether or not it will go on to become invasive hence its treatment is open to question. I agree that our current screening methods fall short in far too many instances and the sea of pinkness surrounding breast cancer trivialises a life-changing disease for those who are unlucky enough to be over-treated and for those who are unlucky enough to die irrespective of treatment.

Prevention is better than cure but since we know no means to prevent cancer at this time we are forced to rely on detection, treatment and attempts to cure, no matter how crude those processes may be.  Cure does not equal relative five or ten-year survival in the eyes of anyone with breast cancer and whilst predicted ten-year survival is good, in my view it’s still not good enough.

Relative Survival (%)
1 Year 5 Year 10 Year
Sex 2005-2009 2005-2009 2007*
Female 95.8 85.1 77
*The ten-year survival rates have been predicted for patients diagnosed in 2007 (using the hybrid approach).
Note: Survival for one and five years is for England only and for ten years is for England and Wales  (Cancer Research UK)

The photo below on the left is one of my rare attempts at gloss and glamour – I was never particularly good at it but if an occasion arose I scrubbed-up reasonably well. This was an in-laws wedding, before the spectre of breast cancer entered my life.   The picture on the right was taken yesterday  345 days into life in the shadow of breast cancer. Surgery, reconstruction and six rounds of chemotherapy have all come and gone and I’m still a cancer patient.  Part way through herceptin, awaiting further surgery and possibly facing Tamoxifen for 5 years or more.

The events of the past year mean I rarely contemplate gloss or glamour for any occasion these days. Waking up each morning and reconvening herceptin (currently suspended due to side-effects) is excitement enough.  The cancer patient look – moon face, spartan hair, a tiredness that’s etched deep into my eyes and skin – is also impossible to disguise, irrespective of gloss and glamour.   Grit and determination have long-since become my only mantra.  Without them I doubt I’d have reached this point whilst avoiding a major infringement on my sanity.

sarahs wedding   today p

*Survival has improved for some, for others it could be termed lies, damn lies and statistics.
  • According to statistics from NCI’s Surveillance, Epidemiology, and End Results (SEER) program, the 5-year relative survival for women diagnosed with inflammatory breast cancer during the period from 1988 through 2001 was 34 percent, compared with a 5-year relative survival of up to 87 percent among women diagnosed with other stages of invasive breast cancers.
  • A 2007 study of more than 50,000 women with all stages of breast cancer found that 77% of women with triple-negative breast cancer survived at least 5 years, versus 93% of women with other types of breast cancer. Another study of more than 1,600 women published in 2007 found that women with triple-negative breast cancer had a higher risk of death within 5 years of diagnosis
  • Breast cancer treatments such as Herceptin that target a marker called HER2 have dramatically improved outcomes for women with this type of cancer. But nearly half of these cancers are resistant to Herceptin from the start and almost all of them will eventually become resistant. Research has shown that women with HER2-positive breast cancer have a more aggressive disease, greater likelihood of recurrence, poorer prognosis, and decreased survival compared to women with HER2-negative breast cancer.