And time goes by

I thought I’d more or less passed all my post breast cancer diagnosis- and treatment-related milestones. But then a few days ago I found myself having to put on a visor halfway through a game of tennis. It was a beautiful sunny morning but it wasn’t because of the sun. It was to stop my hair getting in my eyes.

I hadn’t had to do that since starting chemo in summer 2015. Don’t ask me how I managed it, but I kept playing tennis more or less all the way through chemo (Tennis II). I had eight sessions over 16 weeks. I lost my hair (Learning to live with a wig). I played with a wig on but of course it never grew so my fringe never got in the way.

I finished chemo at the end of November 2015. My hair started to grow back and I stopped wearing my wig just three months later, towards the end of February 2016 (In the end, the wig ditched me). It was very, very short at the time. Now, 16 months on from my last chemo session, I’ve lost count of the number of times I’ve had it cut. Given my experience on the court yesterday, it needs cutting again!

Summer 2015, though? That’s almost two years ago. I finished all the “big” treatments for my breast cancer  – chemo, mastectomy, radiotherapy – over 14 months ago and I still have thoughts every day about whether my cancer will come back. I find it hard to believe that anyone who’s had any kind of cancer that can come back doesn’t. If they exist, I want to know their secret.

But it’s ok. Thinking about something it is not the same as worrying about it. I don’t think you can stop a thought coming into your head. You can, however, decide what to do with that thought. You can dwell on it and let it worry you or you can acknowledge it, process it and send it packing if it’s not helpful. I now regularly do the latter, but it’s taken me a long time to get to this position of strength.

Time does indeed go on. I look back over the half dozen posts I wrote about recurrence last year in the months after my hospital-based treatment ended. I was clearly terrified and was convinced it was only a matter of time before my cancer came back and finished me off. That might still happen, of course. Indeed if I’m being completely honest, I have to admit that I still do expect it to come back at some point. But while I do still think about, I don’t worry about it, at least not in the almost all-consuming, anxiety-filled way I did then.

It’s still hard sometimes. You’ll have been fine for ages then there’ll be a “trigger” of some sort and you’ll be blindsided by a dark thought or a wave of melancholy that seemingly came from nowhere. When that happens, you have to just go with it and remind yourself that it’ll pass and that what you went through was really traumatic so it’s fine still to have big thoughts about it all.

With every little ache or pain I get, my first thought is still that it’s a late side-effect of the various treatments I had, a side-effect of ongoing treatment… or that my cancer’s come back and spread to wherever the pain happens to be. But while you can’t time or measure thoughts, I’m pretty sure these particular ones don’t last longer than a millisecond. If an ache or pain persists, well that’s a different matter; you have to get it checked. When someone suggests booking something for any length of time in advance, my first thought is still whether I’ll continue to be “cancer free” by then. That’s a big improvement on a year ago, though, when my first thought was not whether it would have come back by the time whatever we were planning came round but that it would almost certainly have come back by then. These days, as with the aches and pains, I force myself very quickly to move on and to focus instead on looking forward to whatever it is I’ve just booked. Life is good.

If my cancer comes back, it comes back. John Hurt, the great British actor who died of pancreatic cancer earlier this year, said: “We’re all just passing time, and occupy our chair very briefly.” We might as well make the most of it while we’re here. So here’s to life and to hair getting in our eyes.

This post is dedicated to the lovely Julie, my friend and tennis opponent from the other day who asked me how I was and in doing so inspired this post.

Recurrence 5: How would you know it’d come back?

Your active breast cancer treatment finished months ago. You’ve had follow-up reviews with the doctors who’ve been treating you and they’ve all signed you off. Your first mammogram since you were diagnosed – just over a year ago now – is booked for December. You’re told to get in touch in the meantime “if you’re worried about anything”, which basically means if you think your breast cancer’s come back.

I don’t feel abandoned like some people do. In fact I’d like to be out of the system even more than I am. I still have stuff going on that keeps me involved one way or another: six-monthly cycles of a bone-hardening drug to reduce the risk of recurrence and lower my risk of developing osteoporosis; occasional physiotherapy for the post-surgery underarm cording that’s still there; occcasional treatment for the lymphoedema I have in my reconstructed breast; and a consultation in either three or six months’ time with the plastic surgeon to check the reconstruction.

So how would you know your breast cancer had come back? Well, just as most primary breast cancers are found by women themselves rather than through routine screening (So you think you’re “breast aware”), most breast cancer recurrences are found by patients between hospital or clinic visits. You make sure you’re aware of the symptoms. If you have them, you get them checked out and you find your cancer has either spread (to your bones or your liver or your brain or your lungs or your lymph nodes or a combination thereof) or it hasn’t. If it hasn’t, I imagine you breath a huge sigh of relief and thank your lucky stars. If it has, it must be one of the worst pieces of news you could possibly get. Your best hope then will be that it hasn’t spread too widely and that treatment is available that will keep it under control for as long as possible. As you’ll know if you’ve read my previous posts on recurrence, recurrent/Stage IV/advanced/secondary/metastatic breast cancer can be treated and you might live with it for years, but it can’t be cured. It’s currently ultimately fatal.

Frustratingly, some of the general symptoms linked to recurrence – being more tired than usual, low energy levels, feeling under the weather, poor appetite, weight loss, back pain, headaches, etc – are also caused by common illnesses or ailments. They can also be similar to ongoing side effects of treatment you’ve had for primary breast cancer, such as chemotherapy or radiotherapy, and to side effects of ongoing treatment, including hormone therapy.

Essentially you’re encouraged to report any symptoms that are new, don’t have an obvious cause or don’t go away. Some women who’re not long out of active treatment panic at every ache or pain and head off to their GP or the breast cancer unit where they were originally treated at the slightest twinge. At the other end of scale, some women initially downplay or dismiss their symptoms only to find the symptoms persist and their cancer has indeed spread. Both approaches are understandable. Let’s see which camp I’ll fall into. I can tell you I’ve already had a lump under one of my scars checked out; it’s scar tissue, “nothing nasty”.

Better to err on the side of caution, I say, and to persist if you really feel something is wrong. A new report on diagnosis of secondary breast cancer from the charity Breast Cancer Care exposes what it says are “shocking failings” in the system– patients being diagnosed in A&E, facing avoidable delays and having concerns ignored by healthcare professionals. The report also says over half (58%) of people with incurable breast cancer did not know how to spot the signs and symptoms of the disease. The infographic here* is aimed at helping people who’ve been successfully treated for primary breast cancer recognize the symptoms.

People are surprised to hear that generally the only routine follow-up test you have after treatment for primary breast cancer is an annual mammogram (or ultrasound too in my case – What does follow-up look like?). Mammograms don’t check for secondary breast cancer. They check, rather, to see whether you’ve developed a new cancer in the other breast or, depending on what surgery you’ve had on the breast that had the tumour in the first place, to see whether it’s come back there.

It’s quite hard to accept that there’s no way of knowing your cancer has spread before symptoms appear. There isn’t a test that can tell whether you have dormant cancer cells resting somewhere in your body, or that those dormant cells are about to activate and start spreading, or indeed have just begun to spread. No amount of tests will stop the cancer spreading and, as Cancer Research UK says, since no test can pick up microscopic cancer spread, a negative test doesn’t necessarily mean that there is no spread. In any case, again according to Cancer Research UK, finding out about cancer spread earlier often won’t change how your doctor decides to treat you. I have to say I was surprised to read that.

As I’ve said before (Recurrence 3), you do what you can to reduce the risk of your cancer recurring. You try to live healthily, you keep a watchful eye on your body, you comply with any ongoing therapy, and you go for your annual mammogram and ultrasounds and any other check-ups you’re offered. Ultimately, though, you have to learn to live with the fact that you’ll never know you’re going to remain cancer-free and that those symptoms, if they appear, could be very bad news indeed. At this stage, a year after my diagnosis and just five months out of active treatment, that still seems really unfair.

*This post is dedicated to Jo Taylor, a friend I met through the wonderful social media resource that is Twitter and who created this infographic to help raise awareness of secondary breast cancer. Jo is in her mid-4os, has secondary breast cancer and is a tireless campaigner on issues relating to the disease.  Jo (www.abcdiagnosis.co.uk and @abcdiagnosis on Twitter) has just undergone major surgery and deserves a massive shout-out. Recover and be well, Jo. 

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. worryYou 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.