Back in the waiting room

This week is busy. For the first time in several months I have two hospital appointments in the space of a couple of days. Yesterday’s appointment was the mammogram. Thirteen months have passed since the mammogram that couldn’t find a 2cm lump just 2mm away from breaking through my skin. Eighteen months have elapsed since the regular mammogram that gave the initial false-negative result at the beginning of 2012.  My experience means I have little faith in mammograms; I think I’m still much more likely to detect any future anomalies myself but after so much treatment I hope the eventuality never arises.

I thought I might be apprehensive about yesterday’s hospital visit but I wasn’t. Dispassionate might be a better description of my thoughts and feelings on the subject. I’ve moved beyond the pointless worrying that accompanies any form of diagnostic imaging because it’s wholly futile. Things will either be OK or they won’t. If they’re OK I continue to live a reasonably normal life. If they’re not OK I already know what happens next.  The radiographer told me she couldn’t see anything that looked to be of concern but the formal result will be with Miss M in a few weeks. Waiting is something else I’ve become accustomed to – the result will either be OK or it won’t and whatever it is, I have no power to change it.  This is the reality people who’ve been diagnosed with breast cancer live with for the rest of their lives; the carpet can be pulled from under their feet again at any point in time.  The experience has altered my perception of many things, made me much clearer about how I lead my life and where I spend my time.

Tomorrow is the final blast of herceptin, the wonder drug for people with Her2 positive cancer. Prior to herceptin disease free and overall survival rates for this kind of cancer were some of the worst; few people made it beyond the 5 year follow-up period. Herceptin is a breeze for many but that hasn’t been my experience and no-one can tell me how long the side effects will last or if they’ll completely resolve over time. The joint pain and immobility have been of greatest concern because these side effects impinge on day-to-day life. Weight gain and the inability to lose even a pound when sticking rigidly to 1200 calories a day is frustrating.  Overall though herceptin is a good thing for those whose cancers are Her2 positive, it has proven survival benefits.

3D Dual Colour Super Resolution Microscopy wit...

3D Dual Colour Super Resolution Microscopy with Her2 and Her3 in breast cells, standard dyes: Alexa 488, Alexa 568 LIMON (Photo credit: Wikipedia)

There are a few remnants of what happened last year scattered throughout my body. The scars and fakery are the most obvious as well as my shorter than pixie-cut hair which is still thinner at the front than I’d like. The early menopause that has, as far as I can tell, gone through the hormone deprivation stage and all it entails leaving few after-effects except the future potential for osteoporosis. Two toes on my right foot have subungual haematomas, one is painful the other isn’t, and all of my fingernails have onycholysis (detachment of the nail from the nail bed).  At some point I expect all the affected nails to part company with me but for now they’re hanging on.  An irritable gut that now appears to have a mind of its own irrespective of what I eat, fluid retention and inflexible joints that make me move like a 90-year-old.  Surviving cancer is not without consequences but surviving is still the preferred outcome.

After tomorrow I’ll be in the ultimate waiting room, the one that takes 5 years to get out of.  Hospital visits will be the exception rather than the norm (I hope) during that period, aside from the additional surgeries I’ve elected to have. Shortly the evidence of my skirmish with cancer will be barely noticeable, with luck my stamina and fitness will return to their pre-treatment levels and my clothes will fit again! Being back in the waiting room has no hold over me anymore.  Life is beckoning and I don’t intend to waste it on things I have little opportunity to influence.

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.