When losing counts as a massive win

I was beaten two sets to one in a two-hour tennis match earlier today but I have no hesitation whatsoever in counting this particular loss as a massive win.

This was the first league match I’d played since I was diagnosed with breast cancer last summer. I carried on playing tennis throughout chemo but I dropped out of the leagues and this was my first league match in ten or 11 months. It would have been nice to win but the fact I was playing competitively again really was prize enough.

As you all know by now, the cancer was in my right breast and the right axillary lymph nodes. Given the type of surgery I was to have – mastectomy and removal of all the lymph nodes under my arm – I really was worried that my competitive tennis days might be over. My concern may have been misplaced but the fact is that some women who have their lymph nodes removed afterwards have long-term problems in terms of shoulder, arm and hand strength and mobility on the operated side. And I don’t have to remind you of how terrified I was of developing lymphoedema (Fear of lymphoedema).

I don’t appear to have problems on the mobility or strength front and while I have developed lymphoedema in and around the operated area (Looking forward to a “much more symmetrical overall shape”), there’s apparently no evidence to show that playing tennis increases the risk of it developing in my arm. At least two consultants have encouraged me to go ahead and play, as long as I feel up to it (Acupuncture, tennis, a haircut and going back to work & Should I play tennis? “Yes, just don’t play Federer.”). And so I found myself on court this morning.

The lovely Grafton tennis club in south London

It’s now five hours since the match ended and my arm and shoulder feel fine. And mentally I feel great, which is not usually how I feel when I lose, especially after winning the first set! There are still aches and pains and problems to solve in and around the operated area but it’s a huge relief that they don’t appear to affect my tennis-playing capabilities.

I lost 6-3, 4-6, 3-6. Not too shabby, all things considered.

Happy Bank Holiday Monday!

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.

 

If planning a holiday is a clear sign of recovery…

The point at which you can look forward to and plan a holiday after you’ve finished cancer treatment is regarded as a clear sign of recovery. I must be doing OK as I am in fact planning – and very much looking forward to – not one but several trips.

The reason planning ahead is seen as such a positive step is that for all the months you’ve been undergoing treatment, your time horizon has been limited to the next treatment or appointment. It really is very difficult to see further than that. In fact sometimes – immediately after surgery, for instance – you’re taking things a day, never mind weeks, at a time. I need to refer here to a really thoughtful essay entitled After the Treatment Finishes – Then What? by Peter Harvey, a now retired UK consultant clinical psychologist. For people who’ve finished treatment, he says, planning too far ahead brings its own worries and fears and to switch suddenly to planning for events months in the future is a step too far. That was indeed the case with me for a while but I seem to have “moved on” on that front – at least enough to plan some holidays.

So Andy and I are off to Madrid soon for a few days, to spend some time with some really good friends of 30 – yes, 30! – years, whom we met when we lived there in the 1980s. Then we’re off to Croatia with the boys for two weeks at the end of July.

I’ve also booked flights for that annual long weekend/short week of skiing that I go on with friends every January (Stopping the downward spiral). Flights are very reasonable when you book them ten months in advance (!), but this trip was hard to book. I guess that’s partly because I was still in that “scared to plan” period when the flights became available a month ago. Also, it was on my mind that I had to cancel this year’s trip because I was in the middle of treatment (I love Glasgow, but it’s not Geneva).  And next January really is a long way off. Planning for something next month or even in the summer is very different from planning for something next year. Not only that, by the time that trip comes round I’ll have had my first mammogram since my diagnosis. That’s due in December, a year after my surgery. Anyway, the trip’s booked, as are the other two. There will be uncertainty and worry along the way but for the moment it seems I’m firmly on that road to recovery.

 

 

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.

 

 

 

 

 

 

Acupuncture, tennis, a haircut and going back to work

Good things are happening.

The biggest thing to report on the physical front – and this is massive – is that the peripheral neuropathy in my feet that was caused by the chemotherapy drug paclitaxel has improved dramatically over the past month.

Don’t get me wrong; that painful throbbing and numbness in the balls of my feet and toes is still there, but to a much, much lesser degree. It’s nowhere near as painful as it was and it’s now only very rarely so bad that I have to sit down and rub my feet to try and ease the discomfort. I used to have to do that pretty regularly. It no longer wakes me up at night. In fact sometimes it’s not even there when I wake up. This is still slightly disconcerting as I’d got so used to it; I wake up and lie there wondering what’s wrong and then I remember and savour the fact that it’s no longer there. It’s a lovely (non)feeling.

Now here’s the thing. This easing off of the chemo-induced peripheral neuropathy has coincided with my starting acupuncture. I know those of you who know me well will do a double take on reading that but, yes, I’ve had three sessions to date and I absolutely love it. Regardless of whether or not that has anything at all to do with the improvement in the nerve damage in my feet, I have to say I have never in my life felt as relaxed as I feel during those sessions. I have them through a lovely charity, The Haven. I did wonder what I’d let myself in for when in one of the sessions I felt a needle being placed in the middle of my forehead right where a “third eye” might be if we had one (think Cyclops), but by then it was far too late. It was half-way through a session and, anyway, I was so relaxed by that point that I really almost didn’t care.

Ironically, the peripheral neuropathy is now at its worst when I’m running. The last five minutes of this Saturday’s 5k Parkrun were a bit of a struggle.

There’s plenty more good news. I’ve been back on the tennis courts twice now, albeit playing with the soft balls children play with when they’re learning. You won’t be surprised to hear that it felt really, really, really – I could go on – good. It was fine in terms of my arm and shoulder and abdomen (where the big scar is), both when I was playing and in the following days. On a related matter, the cording in my chest and arm is really loosening up. While certain stretches are still painful, I’ve more or less regained full mobility in my arm and shoulder.

I’d asked the consultant who’s in charge of managing my lymphoedema when I met her a couple of weeks ago whether I should play. The swelling is currently only in the reconstructed boob and surrounding area (Looking forward to a “much more symmetrical overall shape”). If it develops in your arm, the consultant said, it’s as likely to be caused by (over)reaching for a tennis ball as it is from lifting a too-heavy shopping bag. Her advice then? “Do what you enjoy.” That was just the encouragement I needed. It basically confirmed what the consultant on the radiotherapy side of things had said a few months ago (Should I play tennis? “Yes, just don’t play Federer.”). A few days later, I enlisted my lovely doubles partner to knock up with me and the following week the rest of the stalwarts of the ladies doubles team I used to play for also obliged. (Thanks, Mary M, Mary P, Monica and Julie, and thanks to coach Steve who suggested the soft balls! Hopefully it won’t be too long before I’m whacking those hard yellow balls again and back playing in the team.)

There’s more. Five months on from finishing chemo, I need a haircut. That’s happening later today. And this last one is really huge… I start back at work tomorrow. It’s time.

That’s about it on the physical front. What about emotionally? Well, thoughts of recurrence are no longer always the first thing that pop into my head when I wake up in the morning. When they do, I tell them to sod off. Sometimes it works. That’s a big improvement.

Footnote April 11, 2019. I’m not convinced I ever had lymphoedema. Post-op odoema, certainly, but the swelling eventually went. So lymphoedema? I don’t think so.