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.