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.
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28 thoughts on “No gloss or glamour just grit and determination

  1. Tracy,

    I found this post through Scorchy’s reblog. This is such an excellent post that says so much. Like in your situation, a mammogram missed my tumor and, like you, I found a dimple in my breast and brought it to the attention of doctors. Had I not done that and relied upon a mammogram as the gold standard, I might be dead by now.

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    • Hi Beth, I’m sorry you had this happen in your life too. It’s not what we want. I gained an important lesson through the experience – to listen to my body and trust my instincts. There are still some women who get “persuaded” there is nothing wrong because they’re “too young” or don’t present with typical symptoms… Giving this thing any extra time can be life-threatening, I wish more people realised that.

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  2. I am next to you on the ugly slog at this point, Herceptin treated, starting Tamoxifen, more surgery and round faced, fluffy patchy hair…so not what I used to be. It isn’t pretty, I’m not pretty, and I hate the people keep trying to pretty it all up for me, no matter how good their intentions. My heart function has dropped 10%. I am 33. I shouldn’t have to think about my cardiac function at 33.
    Thank you for describing the reality so very well. I no longer have “real” breast. Or hair. Or the body shape I used to. My metabolism is shot. But grit and determination? Those I have.

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    • At 33 you shouldn’t be facing this, I felt cheated at 42 but no-one should be going through this in their 20’s or 30’s? The reality is there are more and more of us younger women finding our lives turned upside down well before we meet old age. My heart function has dropped too, not enough to stop treatment but still more than I’d like. It’s a good job we have grit and determination, without it we’d probably all line up like lemmings and jump off the nearest cliff! I wish you all the grit and determination you need to beat this thing and regain the life you deserve to have, free of side effects, hospitals and everything that goes with them

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  3. Excellent post, Tracy… You capture the essence of this nasty disease so well. It is so often painted as a curable and survivable bump in the road. But, as we know, this is just not what it is. Thank you for painting a more realistic picture. This is such an important post. And thank you for sharing your photos. You are a beautiful person, both inside and out.

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    • Mostly everyone (without breast cancer) assumed when I told them about it that I would be cured – because it was quite small, found early etc etc, and of course everyone who gets it gets better now don’t they? When I told them my oncologist said treatable, not curable, they were shocked. It seems the pink ribbon has created an illusion that every breast cancer patient survives… I’d like there to be more focus on the fact that too many still die and far too many of those who do are young women who should be in the prime of their lives, not dealing with this disease and all it’s accoutrements.

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      • So true, Tracy! You explain it perfectly. This message gets lost entirely too often! I can’t tell you how many people walked up to me when I was bald from chemo and told me that I was young so I’d be fine! I’ve been amazed by all the misconceptions caused by the pink ribbon.

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  4. Never did care that much for Disney. To much attention given to that which is only visible on the surface. Always the expectation of an easy solution. The real truths generally lie far beneath and only reveal themselves–partially–to those who are willing to look that much harder and who are willing to accept less than complete understanding but are still ready to push on…and just go with it. You can do that.

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    • Thanks for the reboot Scorchy, much appreciated. I’d like if our mantra was all candy floss and happily ever afters but its not so we all have to keep telling it as it is and hopefully we’ll get heard

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  5. A brilliant and insightful article Tracy. Your ability to carry out thorough in-depth research and to present the results in a precise but readable manner does you much credit. A note on the photos; And I know I can be accused of being biased; You are just as beautiful 345 days on from the first photo and you will remain so always. Much love and {{{hugs}}}. Dad xxx

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    • Thanks Dad. I have the picture on the left pinned to my fridge. That’s what I’m working towards again. No fluid retention, no aching joints, no walking around as if I’m 800 and feebly asking whoever I happen to be with if they can open my water bottle because I can’t unscrew the cap for myself. When I’m 75 I won’t mind any of those things but that’s over 30 years away so all these extra side effects have got to go! Sending love always, xxx

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  6. I agree with Rara. You are beautiful, Tracy. You have a glow that reveals an inner beauty. You also look like you can kick some serious cancer butt if it dares come round again. {{{hugs}}} Kozo

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    • Ha ha, kicking cancer butt, that’s me Kozo. Thank you for being so kind and supportive, I wish there were more Kozo’s in the world xoxox

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  7. Pingback: A Bouquet of 3 Awards | Ajaytao 2010

  8. If only life could be like the glamorous life of Disney World wouldn’t it be wonderful alas it cant be so its nice to hear you have the Grit to carry on .

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    • You know what this is like Elizabeth, especially when you’re responsible for yourself as we’ll as a teenager, how confusing it is for everyone and how sometimes it seems we take two steps forward and three back. I know it will get better, it’s just a question of hanging on in there until it does.

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      • That is an interesting perspective. There’s so much of life that does not proceed in a linear fashion. And yes, adolescence was one of those times. I am struck with how quickly my daughter’s life progresses. She has so many experiences and ups and downs every week. Here’s to a time when life gets a bit less exciting!

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    • Thank you Rara, you have a unique way of bringing sunshine to all those whose lives you touch, just as much in this virtual world as in the ‘real’ one I’m sure.

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