It’s back

This is the blog post I hoped I’d never write. A lot of people who aren’t yet aware of my situation will be shocked and upset by it. There are so many people I’d like to break the news to on an individual basis but that’s just not possible. Whoever you are, thank you for reading.

It’s back. I’ve been diagnosed with secondary breast cancer. The primary breast cancer for which I was treated “with curative intent” in 2015/2016 has spread and turned up in my bones – most obviously in my spine* – and bone marrow.

The consultant oncologist who broke the news to me is the same doctor who treated me originally. She knew I knew this very well already but I guess she had no choice but to include it in the conversation; it was “treatable but not curable”.

So here we are, having recently started treatment following a diagnosis of secondary/advanced/metastatic/late stage/Stage IV breast cancer. Call it what you want, they all mean the same thing – a life-limiting illness with a very uncertain prognosis.

I was diagnosed formally on 30 April (though I knew it was coming) and I started treatment on 22 May. I’m on a new combination of powerful and aggressive drugs that are aimed at preventing the cancer from spreading any further for as long as possible. For some women, these drugs are game changers in terms of how long they keep the cancer under control. Like the consultant, we’re hoping they will result in a “durable clinical response” for me. We’re trying to be positive and to focus on the fact that I’m largely well at the moment and we hope treatment will keep me this way for a long time.

The good news is that “bone mets” from breast cancer can often be stabilised and managed for long periods of time, ie for a number of years or more. The fact that it’s also in the bone marrow complicates things. We can but see how it goes. The aim of treatment is to control the cancer, relieve symptoms such as pain, and reduce the risk of fracture – while at the same time trying to maintain a good quality of life for the patient.

It wasn’t inevitable, but anyone who follows this blog will know that I was at high risk of recurrence. Lord knows I wrote about it often enough. While I had in fact made peace with that, there’s very little I wouldn’t give for this not to have happened.

For a long time after finishing treatment for primary breast cancer, I lived in fear of it coming back. I worked very, very hard to get to a position where, while I thought about it often, I really no longer worried about it and just got on with living. Life was good; it was very good. I had conquered my fear and I was in a position of pragmatic acceptance that it might one day return. I’m really proud of myself for having got there. It wasn’t easy.

That mindset of acceptance is really helping me now. It’s a difficult time for us all but life goes on. We’ll aim to keep enjoying it and we’ll keep hoping for the best for as long as we can.

As always, writing helps. I’ve already got a few more posts in the pipeline – about my treatment, how I found out, how I’ve had to cancel big cycling plans I had for this year, etc. You know where to look if you want to read them. Wish me luck.

*As well as being in my bone marrow, the cancer is definitely in vertebrae T8, T9 and L4. There is also a lesion in my left-side rib area as well as “areas of less significant scattered bone disease”. My right hip hurts like hell sometimes but while I’m told there are no obvious signs of cancer there, it could well be related in some way to this new diagnosis – although, equally, it may not.

Living life with a new intensity… and Olivia Newton-John

It’s only June and already it’s been a busy year. I’ve gone skiing – twice, once with family and once with friends. I’ve been to Spain – also twice, once when I took my mum to Malaga for a few days, and then later to Valencia for a tennis weekend with some friends. I’ve been up to Glasgow – for work, but I made the most of it and stayed with my mum – and I’ve gone up to Edinburgh for a friend’s birthday party. I’m not finished yet; in less than two weeks, I’m off to New York to spend a few days with my beloved godmother.

I know my carbon footprint is massive with all these flights but my priority at the moment is seeing people who matter to me and spending time with them. I do look after the environment in lots of other ways.

You’re living life with a new intensity and you’re feeling good. You’re in a running club and on top of that you’ve joined a cycling club. You’re doing 10-mile runs (this coming Sunday, run number above) and 74-mile bike rides (last Sunday). You’re playing lots of tennis. You’re enjoying work. You’re “giving something back” by doing some volunteering with a couple of charities.

You’re hugely appreciative you have the means and the time to do all these lovely things. It’s all great fun but you’re not fooling yourself. You know that, having had breast cancer, the reason you’re so active is that your drivers are different from most people’s. You’re acutely aware of the fragility of life and of how quickly things can change and you know that you’ll never again take your health or your time here for granted.

It’s nearly two years since you were diagnosed with Stage 3a breast cancer. Your treatment went really well. You’re tolerating well the daily hormone therapy you’re taking to reduce the risk of your cancer coming back. You’ve got nothing to report to the consultant breast surgeon when you see him for your latest six-month check-up a couple of days before you fly to New York.

The thing is, once you’ve had breast cancer, it’s never really over. Just ask Olivia Newton-John, or rather Sandy from Grease, who announced a few days ago that the primary breast cancer she was successfully treated for 25 years ago – yes, you read that right, a whole quarter of a century ago – has come back in her spine. That pain in her lower back that she thought was sciatica was in fact metastatic or secondary breast cancer. And secondary breast cancer, while treatable, is currently incurable. Not that you’d know that from most of the reporting of the Newton-John news.

Everyone who’s had a cancer that can return deals with it differently. My way, for the moment at least, is not to leave for tomorrow what you can do today. I know too well that what’s just happened to Newton-John could happen to me at any time – tomorrow, next year, in five years or indeed in 25 (although I have to say if I’m still here and it comes back in 25 years’ time – at which point I’d be 78 – I reckon I’ll have done well).

Even if I hadn’t had breast cancer, the news about Newton-John’s recurrence would have been upsetting. As Rosie Millard writes in a brilliant article in The Independent newspaper, “the news that the Grease star’s cancer  has returned grips women of a certain age who grew up looking to her as something of a lodestar of our own happiness and maturation”. I saw Grease for the first time as a teenager in the summer of 1978 in Vancouver, where I spent the whole of the school holidays – courtesy of my great uncle who lived there – enjoying a freedom I’d never had before. The film hadn’t come out yet in Britain and so for a few months back home in Glasgow I had rare bragging rights among my friends!

Sandy’s transformation from good girl to bad scandalised and thrilled in equal measure us 14- and 15-year old Catholic schoolgirls. My mum didn’t approve of the film. I remember her telling me that she’d heard there was “a not very nice scene in the back of a car”! I bought the album. I’ve still got it. I know almost every word to every song. I feel I’ve been singing along to the soundtrack for much of my life. I even dragged my husband and some friends – some were willing and some were not so willing – along to the sing-along version as part of my 50th birthday celebrations a few years back.  And yes, we dressed up!

If you follow this blog, you’ll know I’m doing a 100-mile bike ride in July to raise money for a breast cancer research charity. One of the fundraising events I was planning to organise involved a showing of Grease. I’m not sure I’ll do that now. Instead of being a bit of a laugh, it would just be sad.

The fact that breast cancer can come back and kill is the reason I’m raising funds for Breast Cancer Now. One of the charity’s goals is that by 2050 no-one will die of breast cancer. I’m doing the Prudential London-Surrey 100, on Sunday 30th July. It’s a mass cycling event that starts at the Olympic Park in east London, goes out through the Surrey hills and finishes back in central London in front of Buckingham Palace. If you’d like to sponsor me, you can do so here: https://www.justgiving.com/fundraising/maureen-kenny.

My training’s going well and I’m really enjoying it. I’ll carry on living for the moment and as I’m struggling up a hill on my next practice ride I’ll spare a special thought for Sandy Olsson – or rather, Olivia Newton-John – as she gets on with this next challenging phase.

What does follow-up look like?

So what happens now? What does follow-up look like now that I’ve largely been signed off by the consultants who’ve been treating me for varying lengths of time since my breast cancer diagnosis one year ago this very week?

At around the one-year anniversary of my surgery, in mid-December, I’ll have a mammogram and an ultrasound scan on the good boob (if you’ve had cancer in one breast you’re at increased risk of getting it in the other) and an ultrasound scan on the reconstruction (there’s no point in having a mammogram as there’s no, or next to no, breast tissue there). The plan is that I’ll have those tests anually for at least five years.

I’ll have my next and third round of the bone hardening drug, zoledronic acid, in September. I’ve changed from having that every three months to every six and the plan is to continue on that basis for the next couple of years. I’m on letrozole, daily hormone therapy. Letrozole lowers oestrogen levels in the body and so increases your risk of developing osteoporosis. The bone hardening drug is to counteract that. It’s also been shown to reduce the risk of the cancer coming back in post-menopausal women like me.

I’ll have a bone density scan once I’ve been taking letrozole for two years to measure the effect letrozole has had on my bones so far. The scan I had before starting hormone therapy showed I had strong bones to start with, which is good.

And that’s it.

Or is it? This follow-up plan only works, of course, as long as there’s no recurrence. If that happens, all bets are off, as you’ll know from posts I’ve already written. In between your formal follow-up scans and whatever other ongoing treatments and/or appointments you have, you need to stay aware of the symptoms of secondary breast cancer, not panic at every ache or pain but get any worrying signs checked… and hope like hell that the concern that led you to go and get checked was misplaced and that you are in fact still cancer free.

 

 

Recurrence 4: Fasting, aspirin, statins… is there anything that doesn’t reduce the risk of breast cancer coming back?

Every week it seems we’re being told that scientists have found yet something else that reduces the risk of breast cancer coming back or spreading. Prolonged nightly fasting, low-dose aspirin, cholesterol-lowering drugs, taking anti-oestrogen tablets for a decade instead of five years… you name it, it’s all meant to help improve the odds that women who’ve been treated successfully for primary breast cancer will live the rest of their lives breast-cancer free.

There’s been a lot in the past few months alone*. First it was reported that prolonged nightly fasting – of more than 13 hours, for god’s sake! – might reduce the risk. Then we were told low-dose aspirin might do the same (this isn’t new as such but there was new research). More recently there was huge media excitement over the possibility that cholesterol-lowering drugs or statins might prevent breast cancer that is fueled by oestrogen – by far the most common type of breast cancer – from returning. Then just a few weeks ago, reports seemed to bolster the argument that women with this type of cancer should take oestrogen-blocking aromatase inhibitors for ten years instead of the currently recommended five.

Read behind the headlines, though, and you invariably find things are never as straightforward as they seem. The research will be very early, or it’ll be based on limited data, or it’ll potentially apply just to some, not all, women, or there will be side effects that potentially outweigh any added benefit. You soon realise developments are nowhere near as earth-shattering as the headlines imply.

It’s easy to see why people want to believe we’ve solved the problem of breast cancer coming back and/or spreading. Primary breast cancer doesn’t kill but secondary/advanced/late-stage/Stage IV/metastatic breast cancer does. Once you’ve got it, median survival is just two to three years (Recurrence 1 & Recurrence 2). More than 11,500 women (and tens of men) die of breast cancer in the UK alone each year.

There’s no shortage of risk-reduction advice out there. Some of it is clearly rubbish, but I kind of understand why people choose to believe it. The novelist Helen Dunmore puts it much better than I ever could in her book The Siege. She writes: “The facts of life have been torn up and scattered, so you might as well believe in theory and rumour as anything else.”

You really do feel when you get a cancer diagnosis that the divine order of things as it were has somehow been disturbed. We complacently believe we’re all going to live til we’re 90 and we’re shocked, stunned, outraged, etc, etc, etc when we realise we might not get there. Dunmore’s novel is about the two-and-a-half- year siege of Leningrad during the Second World War in which hundreds of thousands of people starved to death. At some point during the blockade, people took to believing it was safer to walk on southern side of the street. It had to do with the fact the Germans were bombarding from the south of the city and so the northern pavements were seen as more dangerous. It probably didn’t make any difference which side you walked on. Like people who are desperate for a “cure” for their cancer or want to do everything they can to stop it coming back after being treated successfully first time round (Recurrence 3), it was case of any port in a storm.

Cancer Research UK points out that the fact there are problems with conventional medicine doesn’t automatically prove that alternative “cures” work. I like the metaphor they use: “Just because cars sometimes crash doesn’t mean that flying carpets are a viable transport option.” Sometimes, though, for the best of reasons, we really want to believe they are.

 

Recurrence 3: Keeping my side of a really hard bargain

After you’ve had treatment for breast cancer, you’re told to do certain things to reduce the risk of it coming back. Don’t smoke, cut down on your alcohol consumption or stop drinking altogether, eat healthily, keep to a healthy weight, exercise and keep fit and, for many of us, keep taking the daily anti-oestrogen therapy (One down, just 3,652 to go).

This is all good advice. Really it’s no different from what we’re meant to do anyway (apart, of course, from the hormone therapy). I do have a problem with it, though. It risks making women feel guilty if they don’t manage to follow it – regardless of whether their cancer comes back or not.

I’ll do my best to keep my side of this hard bargain. No matter how well I manage, though, there’s no guarantee I’ll stay “cancer-free” (Recurrence 1 & Recurrence 2). As with getting breast cancer in the first place (How did I “get” breast cancer?), there are factors – some undoubtedly we’re not yet even aware of – over which we have little or no control.

So what am I doing to reduce my risk of recurrence? I don’t smoke, so that wasn’t a problem. I’ve always been active and done loads of sport but I’ve now started running regularly – not far, but at least I’m doing it. Also, I make a point of cycling to places where before I might have driven. So I’m probably fitter than I was before  I was diagnosed last July. I’ve also shed a good few kilos. I’ve gone from being a regular to an occasional drinker of alcohol… although I did make an exception for the few days I’ve just spent in Madrid (If planning a holiday is a clear sign of recovery…)! Finally, while I reckon I ate pretty healthily before, I have changed my diet quite substantially. I eat far less, for a start. I can’t bring myself to become a vegetarian but I have cut down on red meat and I’ve almost completely cut out processed meats – I very rarely now have things like bacon or chorizo, both of which I adore. I didn’t eat a lot of what I would term “rubbish” before, but I’ve cut out almost completely things like crisps and biscuits. We were on the coast in Norfolk for a few days over the Easter break and I didn’t even have an ice cream. Yes, I agree, where’s the fun in that?

I know these changes are all positive, but to be honest I’d feel better about them if they’d been driven by a genuine desire for change rather than by fear of recurrence.

A while back, I went to two pubs in one day – not my usual practice, I assure you. In one I had a coffee and in the other I had lime and soda. That would have been unthinkable before breast cancer. I’m sure it’ll wear off but I’m still at the stage where I have to force myself not to be paranoid or judgmental about the drinking and eating habits of friends, family members and even random members of the public. I look at folk knocking it back in the pub or tucking into some really unhealthy food and think “I know where you’re heading”. If I’m not careful, I’ll end up healthier and fitter than ever before but I’ll be bloody miserable and a real party pooper!

 

Recurrence 2: So what are my chances?

Some women have no interest in knowing their prognosis once their treatment is finished but I wanted to know as much as possible about the likelihood of my breast cancer coming back or spreading.

So what are my chances? Well it doesn’t take a genius to work out that I’m at high risk of recurrence. There are several critical factors. I was still early stage (Stage 3a) and so was treated with what’s known as “curative intent”, but the tumour was big at the time of diagnosis, the cancer was fast growing, and, as they say in the business, there was axillary lymph node “involvement”, ie cancer cells had spread from the original tumour to the lymph nodes in my armpit. When that happens, there’s a higher chance that cancer cells that can’t be detected have spread elsewhere. The chemo I had before surgery did a great job in both the breast and the lymph nodes. Nonetheless, seven of the ten nodes that were removed during surgery were found to have some active – ie chemo-resistant – cancer cells. The concern is that any undetected cancer cells that may be elsewhere also survived chemo and that they’ll cause havoc in years to come. Letrozole, the hormone therapy I’m taking on a daily basis, is designed to make those cells slow or stop growing and/or spreading to other parts of the body. Zoledronic acid, the bone hardening drug I’m taking – every six months now – should also help.

There are various online tools where you or your doctor can pump in your data – such as NHS Predict, the Nottingham Prognostic Index and Adjuvant! Online (although this last one is offline at the moment) – and get information regarding, for example, your likely five- or ten-year survival rates with and without treatment. The information is often used to help patients who are at borderline risk to choose chemotherapy or not with their doctors. None of these tools deals specifically with women who had their chemo upfront as I did. Still, you get a pretty good idea.

The consultant oncologist has given me a percentage range for my future cancer risk, taking into account all the treatments I’ve had or am continuing to have. The range is so broad that if you focus on the figure at the higher end you freak out while at the lower end you think, ok, I can cope with that. On the positive side, the consultant says my “robust” response to chemotherapy makes her “hopeful” that my real risk of recurrence is lower than my predicted risk. I’m hopeful she’s right.

I’m not repeating here the figures from the consultant as that’s all they are, figures. There’s no way of knowing what will happen in your own, or indeed in any, particular case. You can have a poor prognosis and do well or have a good prognosis and do badly. Recurrence can happen in breast cancers that are caught far earlier than mine was. Early detection of primary breast cancer may result in you having less aggressive treatment and a subsequent low risk of recurrence, but it’s a common misconception that if you catch it early you’re guaranteed a lifelong “cure”. As we know (Recurrence 1: So you think you know about breast cancer), breast cancer can essentially come back any time and while secondary breast cancer is treatable, it cannot be cured… and survival rates are poor.

Many people still think that with breast cancer the risk of recurrence goes away – ie that you’re cured – if you’ve been “cancer free” for five years. It’s not true. The highest risk of recurrence with breast cancer is during the first two years following treatment but, with my breast cancer “subtype” – in common with about 70% of breast cancers, mine was oestrogen-receptor positive (ER+), ie it depended on oestrogen to grow – around half the cases of recurrence occur five years or more after diagnosis of the primary tumour. It can come back in five, ten, 15 or even 20 years. I recently came across a statistic that says that one third of breast cancer patients treated with anti-oestrogen hormone therapy currently relapse within 15 years.

So of course you worry about recurrence. Would anyone in my position – not long out of treatment and at high risk – really not? There are some great strategies and techniques for keeping the fear manageable. You have to work at it but they do work. I’m already so much more in charge of my thoughts – remember, folks, you control your thoughts, not the other way round – than I was even just a month ago. It’s funny but it comes as a real relief when you catch yourself worrying about something other than recurrence… such as whether we’d been driving around without car insurance for six months (we hadn’t, we’d just lost the documents)… or whether we’ve properly fixed that leak in the upstairs bathroom (I think we have)… or whether the boys will do ok in the exams they’re smack bang in the middle of (we’ll find out when they get the results in August). On that last point, incidentally, I’m worrying much more than the boys are. I think that’s good.

On the fear of recurrence front, ultimately I’m aiming to emulate the character played by Mark Rylance in the film Bridge of Spies. Tom Hanks asks Rylance repeatedly in the film: “Aren’t you worried?”. Rylance’s reply is always the same: “Would it help?”.

I’m aware I’m at risk of sounding rather flippant there. I don’t mean to. Getting used to the fact that I’m at some level of risk of recurrence indefinitely is not going to be easy. But that’s a damn good attitude to have. Worrying will not change the outcome.

 

Recurrence 1: So you think you know about breast cancer

The opening line of the first book in Lemony Snicket’s children’s book series A Series of Unfortunate Events is “If you are interested in stories with happy endings, you would be better off reading some other book”. I can’t remember what age our was older son was when he first started reading that book, but he stopped right there, after that first sentence.

That’s my way of warning you that this post – about breast cancer recurrence – is not an easy read. As someone who’s only very recently finished treatment for primary breast cancer, I can tell you that secondary breast cancer is not an easy subject. But as you’ll know if you’ve been following my blog since I was diagnosed last summer, I’m a firm believer in the whole “knowledge is power” thing. Here’s another warning… this is the first in a series of posts about recurrence. There’s lots to say.

If you’ve had breast cancer once, your risk of recurrence is essentially never zero. Having primary breast cancer is bad, but getting a secondary breast cancer diagnosis must be a whole lot worse. Primary or early-stage breast cancer is curable; secondary or late-stage breast cancer is not. I suspect a lot of people don’t know that, despite the fact that breast cancer has such a high public profile. You can live with secondary breast cancer, productively, and sometimes for many years , but it seems that median survival once you have it is just two to three years, and that hasn’t changed in decades. In England, only 15 out of 100 women will survive for five years or more after they are diagnosed with secondary breast cancer. In the UK alone, almost 12,000 women die of breast cancer each year.

When you finish your hospital treatment of chemotherapy, surgery and radiotherapy, you’re relieved and happy that it’s over. At the same time, though, you know you can never be sure your cancer has gone completely. As the US organization breastcancer.org helpfully points out, “even a single cell that escaped treatment” may be able to spread and grow into a tumour. In addition, women who’ve had one breast cancer have an increased risk of developing cancer in the other breast (known as second primary breast cancer) for at least 20 years compared with the general population.

Breast cancer can come back in or around the area you had it originally. That’s known as local or regional recurrence. Worse, breast cancer cells can spread from your first tumour in the breast through the lymphatic or blood system to other parts of your body, most commonly with breast cancer to your bones, or to your lungs, liver or brain. This can become apparent soon after diagnosis or many years later. The tiny “micrometastatic” cells leave the primary tumour early on, but the secondary spread they cause can lie dormant for years. When this “distant recurrence” happens, it’s called secondary, late-stage, Stage 4, advanced or metastatic breast cancer. It can be managed but it is not curable. You don’t die of primary or early-stage breast cancer, where the cancer hasn’t spread beyond the breast and the axillary lymph nodes; breast cancer kills when it spreads to other parts of the body.

Everyone knows that one in eight women will develop breast cancer over the course of their lifetime. Thus the name of this blog. But how many women who’ve had a primary breast cancer diagnosis go on to develop secondary breast cancer? It’s seemingly not known with any real certainty but a commonly cited figure – in the US – is 20-30%. There appears to be no figure specifically for the UK, although I’ve seen one in five, “up to a third” and  “roughly 35%” all cited. It is known, though, that the earlier breast cancer is caught the less chance there is of it recurring. Most breast cancers are diagnosed at Stage 1 and women in this category have negligible risk of metastatic disease, even though they may have received radiotherapy and even chemotherapy. Some 5% of breast cancers are already Stage 4 at diagnosis.

It is also not known with any great certainty how many of the estimated more than half a million people in the UK who’ve had primary breast cancer are living with recurrent or metastatic disease. I’ve seen just one estimate, of 35,000, and I’ve only seen it used by one organisation, Breast Cancer Now. There’s no firm data in the US, but there’s an estimate of more than 150,000.

A big new report on secondary breast cancer notes that while there has been progress in the scientific understanding of the disease, there have been just modest improvements in outcomes. There have been incremental advances in survival and quality of life during survival but these advances are not realised by all women. The pace of innovation in this field, says the report, appears to have slowed in recent years in terms of treatment advances and clinical research. This is clearly an area where more attention is needed.

I decided to ask my oncologist for her thoughts on all this. She commented that part of the challenge is that there is no one-size-fits-all treatment for secondary breast cancer. Treatment depends among other things on the burden of the cancer in each patient. This, though, she said, is leading to there being a push towards individualising therapy for each patient with the disease in an effort to enable women to, as it were, “live alongside” their cancer. She also highlighted the fact that there is more focus on aggressive treatment for small amounts of secondary breast cancer that might be curable; perhaps small individual metastatic – “oligometastatic” – spots that can be removed by surgery or fixed with local radiotherapy. Lastly, she pointed to the existence or development of “exciting new therapeutic strategies” in fields such as immunotherapy, harnessing the patient’s own immune system to fight cancer.

So things are happening. Immunotherapy and targeted therapies – treatments that target specific characteristics of cancer cells – are the big hopes for the future. Potential new drugs are in clinical trials and research is under way into how and why metastasis happens and what it might take to stop it. But this all takes time.

In the meantime, breast cancer is the second most common cause of cancer death among women in the UK, killing around 1,000 every month. That’s around 12,000 a year (to be precise, 11,643 in 2012, along with 73 men). You might be wondering whether that’s a lot. Well it’s all relative, I guess. Lung cancer,  the most common cause of cancer death in women in the UK, was responsible for 16,067 female deaths in 2012. But compare it with, say, the number of deaths there have ever been in the UK of people with HIV/AIDS. The total number between 1980 and 2013 was 21,718. That’s less than the number of breast cancer deaths in two years. Makes you think, doesn’t it? In the early days, as everyone knows, HIV/AIDS was almost always fatal but thanks to advances in treatment it’s now treated as a long-term chronic condition. It would be good to think this might one day be the same for secondary breast cancer.

I bet much of this will come as a surprise to a lot of people reading this. Breast cancer in the public’s eye has gone from being a disease that was a sure death sentence to one that can be treated and cured and survived, with surviving meaning you’re free of the disease for ever after. That clearly couldn’t further from the truth for many women, and some men too. This quote (taken from an article on the report referred to above) illustrates perfectly the shift that has taken place: “In the 1970s, we had to fight the taboo against talking about breast cancer; now we have to fight the taboo against talking about how breast cancer can kill.”

In very broad terms, risk of breast cancer recurrence reduces over time, but it never completely goes away*. I think it’s important people know that. I think plenty don’t. I’ve heard it said that you only really “beat” or survive breast cancer if you die of something else. That sounds a bit melodramatic but at this precise moment, at just two-and-a-half months out of treatment, I can relate to that.

*April 2019 update: Since I wrote this, further evidence has emerged that with the type of breast cancer I had, ie estrogen-receptor positive, the risk of recurrence essentially stays constant for as much as 20 years.

 

 

 

 

 

 

Side effects you really don’t want to think about (Radiotherapy Part 3)

I know it’s seven weeks since I finished my course of radiotherapy but I really feel I need to get this off my chest. The potential long-term side effects of breast cancer radiotherapy are something else. There, I’ve said it.

At my first appointment with her, the consultant oncologist in charge of my radiotherapy explained why this treatment was being recommended for me. She talked me through the proposed treatment plan, the practicalities involved in planning treatment and the treatment itself, and, of course, the potential short- and long-term side effects. She then offered me a consent form for signing… or not. I did ask if people refused treatment. Yes, the consultant replied, but not in cases such as yours where radiotherapy has such a clear benefit in terms of reducing the risk of recurrence and improving overall prognosis. There was never any doubt that I would sign.

As with other breast cancer treatments I’ve had – chemo, surgery – or am continuing to have – hormone therapy – radiotherapy has lots of potential nasty side effects. Some are immediate, and some are more long-term and can occur months or years after treatment. If you’re familiar with this blog, you’ll be aware of some of the short-term ones: skin redness, tiredness, swelling and tenderness of the reconstructed breast, swelling from fluid build-up in the treated area, etc. The potential longer-term side effects are much scarier. That said, they’re less likely – in some cases much less likely – to occur than the short-term ones. They include shrinkage and firmness of the reconstructed breast, increased risk of second malignancy, rib fracture, lung scarring and a 10-15% risk of lymphoedema. And, of course, damage to the heart, especially if you’re having radiotherapy on your left side.

Let’s go through them. Around one in ten women who have radiotherapy following reconstruction experience shrinkage and hardening months or years after treatment. What a nightmare that must be. I agonised over whether to have a reconstruction or not and in the end decided to go ahead with one that involved transplanting abdominal fat and required major surgery. It was a massive deal. Nearly four months on, there are some “issues”, but it looks like the result will be good in the end. You really don’t want to wake up one day in five years’ time to find it’s shrunk and feels like concrete. The plastic surgeons, too, must hate seeing what radiotherapy does to their lovely artwork. It’s no wonder then that “with a view to improving cosmetic outcomes“, clinical trials are under way to determine whether it’s safe to do things the other way round, ie to give radiotherapy before surgery.

As for the other potential long-term side effects, well everyone knows radiation can cause cancer as well as treat it, so the warning about a “minimal risk of second malignancy” was no surprise. But rib fracture? And lung scarring? Well it seems a rare potential late side effect of radiotherapy to the breast is “weakening of the underlying ribs on the treated side“, which may “increase the risk of a fracture in later years”. I’d better be extra careful when I go skiing.

An equally rare or even rarer side effect than rib fracture is lung scarring, aka pulmonary fibrosis, which can result in serious breathing problems (guess there wouldn’t be much skiing at all then). If you’re having radiotherapy to the breast and chest wall, it’s impossible to avoid the lung. The reason I had to hold my breath during treatment was to lift the treatment area away from the lung and so minimise exposure.

Finally, with regard to lymphoedema, well I was already at risk of that anyway as a result of having had the axillary lymph nodes removed during surgery. And yes, I have developed it, in and around the breast area, but I’m hoping it can be resolved, to some extent at least.

So what else do I need to look out for now that I’ve had radiotherapy? Well, swelling caused by treatment can persist for months or even years. Also, irradiated skin may burn more easily from sun exposure and be prone to infection and breakdown, so you need to be extra careful in the sun. And here’s a nice one to finish. Breasts that have been irradiated may not grow or shrink in size as much as untreated breasts, or indeed at all. Radiotherapy seemingly freezes own-tissue reconstructions at the size they were before radiation treatment. Again, this is pretty annoying as one of the benefits of this type of reconstruction over an implant is that the new boob changes with you as you gain or lose weight. One of the main causes of asymmetry between the “treated” and “untreated” breast is, apparently, weight gain. While that’s a clear incentive to keep to a steady weight, it’s not much consolation to those women who put on weight as a result of the hormone treatment they may end up taking for as long as ten years after they’ve had chemo, surgery and radiation (or combination thereof) in an effort to guard against the cancer coming back.

I’m aware I’m not doing a very good job here of “selling” radiotherapy. Radiation treatment reduces the risk of recurrence and that is, of course, the main concern. But it doesn’t half add to the baggage that comes with having or having had breast cancer.