A life well-lived

Maureen passed away peacefully yesterday, a week after she was able to celebrate her 59th birthday, something she never dared to plan. This is her husband Andy and I was privileged to be at her bedside when she drew her last breath, along with our sons Jamie and Finlay and a close friend. In her final weeks our house was filled with love, joy and laughter as she faced death with characteristic courage and good humour. She read every one of your responses to her last post and your affection and support gave her great comfort, so thank you.

Maureen hoped that such a frank and personal account of her experience would help others in similar situations but it was also an important part of her own cancer journey, allowing her to organise her thoughts, understand what was happening to her and find some happiness and even amusement in the darkest of places. It gave meaning and purpose to this most difficult and cruel period of her life and your engagement with it brought her immense satisfaction.

Once again, my sincere thanks and best wishes to you all.

Andy Tighe

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.

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.

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 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.