Getting an incurable cancer diagnosis is not “a relief”

I’ve heard reports of people who’ve had cancer saying it came as a relief when they were told – perhaps many years after their initial treatment – that their original cancer had come back and was now incurable.

The reasoning behind this sentiment is that some people have such a bad time worrying that they might suffer a recurrence that when it actually happens, they’re relieved as it means they can at last stop worrying about it.

I don’t know if the accounts are true. As someone recently diagnosed with metastatic cancer, I really hope they’re not. It’d be too sad if they were.

Not everyone suffers from it, but fear of recurrence after you’ve been treated for primary cancer is totally normal. As everyone reading my blog should know, it’s broadly true that once cancer spreads beyond its original site, it can no longer be cured. Secondary cancer can be treated and held at bay for a certain length of time but you won’t get better. For as long as you are alive, you will be living with incurable cancer and everything that entails – psychological as well as physical. You’ll die of it or at the very least with it. So of course you’d be scared it might happen.

However, if your anxiety is so bad that you genuinely feel you’d be relieved to be told you have incurable cancer, I would urge you please to seek help. Actor Kathy Bates told a major cancer conference recently that “life after cancer is a precious gift”. If your anxiety around fear of recurrence is preventing you from seeing that, you owe it to yourself to do something about it.

So-called cancer survivors – I never liked that term – talk about “waiting for the other shoe to drop”. That’s the feeling that at some point down the line – five, 10, 20 (or in my case just over three) years – you’ll be told your cancer has come back and can’t be cured. I completely understand the waiting-for-the-other-shoe analogy, but fear of recurrence shouldn’t prevent you from enjoying the currently “no-evidence-of-disease” life you do have.

Let’s be frank. With metastatic cancer or “mets”, the issue is how much longer you’re going to be alive. With fear of recurrence, regardless of your risk, you’re worrying about something that might never happen.

After my treatment for primary breast cancer ended, I never suffered from “survivor’s guilt”, that feeling that some people have at having survived a life-threatening event that has taken and continues to take the lives of so many others. However, I suffered very badly from fear of recurrence. For a while I could think of little else. I wrote about it extensively. Eventually, I sought help.

As I’ve written before, I realised that if my breast cancer did come back, I’d far prefer to look back and see I’d made the most of the “in between” time than to look back and regret that I’d spent that time worrying. I went on two courses, run by two breast cancer support organisations, Breast Cancer Care and The Haven. I learned strategies for coping with anxiety that I still find invaluable. I also talked to a counsellor. I learned to stop worrying. If that hadn’t worked, the next stop would have been my GP.

“Moving forward” after your initial treatment has finished is not easy, but you have to try. While it’s totally normal to go through a period or periods of anxiety, it shouldn’t be a permanent state of affairs.

There’s a saying that no-one on their death bed looks back and wishes they’d spent more time in the office. I think it’s the same here. Surely no-one diagnosed with incurable cancer – or indeed any life-limiting illness – looks back and wishes they’d spent more time worrying that one day the event they were dreading might in fact happen.

Treatment – a reluctant trailblazer

“A trailblazer on a path you don’t want to be on.”

I paraphrase slightly, but that’s what the specialist breast cancer nurse at the hospital where I’m being treated said I was.

I have to say I was touched by the huge degree of empathy with which the nurse said it. This was just after the consultant told me that the treatment she was proposing for my secondary breast cancer was a combination of drugs that has just been made available under the NHS in England for women in my specific situation.

Given together, the drugs have been shown to improve what’s called “progression free survival”, ie the length of time patients live without their disease getting worse, and so delay the need for chemotherapy.

This latest development has been described as “fantastic news” for women such as me. The nurse was spot on with her description. I’m the first person at my stage of the disease and at my stage of treatment to have this therapy at the hospital trust where I’m being treated. I’m definitely grateful, but it’s a funny kind of gratefulness.

I started treatment on 22 May and I’m trying to focus more on the fact that the consultant is hoping for a “durable clinical response” than on the “significant, unavoidable or frequently occurring” risks of the treatment that are ticked on the consent form (see image).

The drugs are abemaciclib and fulvestrant – the brand names are Verzenios and Faslodex respectively for anyone who’s interested.

Abemaciclib is taken continuously in 28-day cycles as tablets – one tablet, twice a day, 12 hours apart. Fulvestrant is given as two injections – one in each buttock, not pleasant – each of which takes a couple of minutes to administer. You’re given it on Day 1 and Day 15 of Cycle 1, then on Day 1 of Cycle 2 and all future cycles – so that’s every two weeks for the first three doses, then once every four weeks.

You stay on these drugs for as long as they’re keeping the cancer in check and you can manage the side effects. Or, officially, for “as long as the patient is deriving clinical benefit from therapy or until unacceptable toxicity occurs”.

It could be a few months before we find out whether the drugs are working or not. If they’re not, you move straight away on to the next line of treatment. As for toxicity, the big worry with abemaciclib is diarrhoea. It’s a very common side effect and it can be so severe that the dose has to be reduced or a break in treatment is required. Three weeks in and I’m extremely relieved to report that I have got off very lightly indeed on this front. That may be partly explained by the fact that one of the side effects of the painkiller I’m on for the pain from the “bone mets” I have is constipation. I like to imagine the two drugs battling it out together inside me for supremacy.

You’re under close medical supervision, especially in the initial phase of treatment. You have blood tests every two weeks for the first two months, monthly for the following two months, and then as needed. You have scans every few months to check whether the drugs are working.

The cancer is in my bone marrow and bones, most significantly in my spine. Bone mets weakens your bones and puts you at risk of what are called “skeletal related events”. These include fracture, radiotherapy or surgery to the bone, and spinal cord compression or surgery to bone. To reduce the risk of these SREs happening, I’m back on the bone-strengthening drug, zoledronic acid or Zometa. I had that for a while after my active treatment for primary breast cancer ended; it was supposed to reduce the risk of it coming back. I have Zometa monthly too – via infusion, like chemo, on the same day I have the fulvestrant injections. The infusion itself takes 15 – 20 minutes. Zometa can also ease the pain that comes with bone mets. On the downside, as I mentioned when I started taking it before, it can also occasionally cause a very nasty condition called osteonecrosis of the jaw.

Fulvestrant is a hormonal therapy that aims to help shrink or slow the growth of metastatic breast cancer such as mine that feeds on oestrogen. Abemaciclib is what’s called “targeted therapy”, ie it’s a type of drug that targets specific characteristics of cancer cells, such as a protein that allows the cancer cells to grow in a rapid or abnormal way. Abemaciclib is one of a class of drugs called CDK4/6 inhibitors, which work by targeting two crucial cell division proteins, CDK4 and CDK6.

There’s a bit of a debate over whether CDK4/6 inhibitors are chemo or not. In the end, it seems it comes down to definitions.

This new combination treatment that I’m on hasn’t been in use long enough for it to be clear whether it also improves long-term survival, ie whether you live longer overall. In terms of quality of life, though, improvement in progression free survival is hugely important. The treatments don’t get any easier as your cancer gets worse. Not do the effects of the cancer itself, of course, so the longer it can be held in check, the better.

It’s very early days. Let’s hope I fare well on that trail I’m reluctantly blazing.

My final Zometa, a bone density scan and a – clear – biopsy

It’s been a busy couple of months, here in cancer survivor land.

I had my two-year “no evidence of disease” anniversary at the end of February.

Since then I’ve had my final cycle of Zometa, a drug I’ve been taking periodically since finishing active treatment for Stage III breast cancer in November 2015 in the hope that it will reduce the risk of my breast cancer spreading to my bones. I’ve also had a bone density scan that assessed the impact on my bone strength of the anti-oestrogen tablets I’ve been taking daily for more than two years now. That was fine. Finally, I’ve had a biopsy done on a lump in the breast where I had cancer that turned out to be nothing more sinister than – essentially – dead, hardened fat.

My two-years-out-of-treatment anniversary was an anticlimax. I’m not sure what I was expecting but the day – February 26 – came and went, uneventfully.

My final cycle of Zometa in early March was a different matter.

Zometa is the brand name for zoledronic acid, a medicine that belongs to a group of drugs called bisphosphonates. Among other things, it’s used to help prevent breast cancer spreading to the bones in women who’ve been treated for the disease and are post-menopausal. I’m one of those, and I’d been having Zometa initially on a three-monthly and then on a six-monthly basis since my final chemo session in November 2015. I had to go to hospital for it as it’s given as an infusion, ie via a drip.

Walking out of the hospital after my final session, I was completely blindsided by a wave of utter panic. I remember walking along the long corridor to the exit feeling like a support had been kicked away from me and that all that was now between me and a recurrence were those little yellow letrozole tablets I take every night before I go to bed. I was, literally, panic-stricken, but I knew what to do. I know it sounds a bit new-agey, but I stopped, acknowledged what was happening, thought about it for a couple of minutes, then gathered myself and moved on – physically and emotionally. I knew that the benefit of Zometa is in the first three years – this final cycle just about takes me up to three years. My oncologist had already talked it through with me and I knew this was to be my last cycle. It was good to be at this stage. I just hadn’t expected to have this reaction. I’ve said before, you can be fine for ages and then out of the blue something triggers a response like this.

As for the bone density scan, I’m delighted to report that things are pretty much unchanged from the “benchmark” scan I had in December 2015, just before I started taking letrozole. This medicine works to lower oestrogen levels in the body and so increases your risk of developing osteoporosis. My “score”, though, has remained normal. I guess that’s down to a combination of things – including the Zometa infusions (this drug is also used to counteract the oestrogen-depleting effects of letrozole on the bones), the calcium and Vitamin A supplements I take daily (also designed to strengthen bones), and all the weight-bearing exercise (running and tennis) I do. And probably also to some extent the luck of the draw.

Assuming everything continues to go well, I won’t have another bone density scan for another two-and-a-half years, at which point I’ll have been taking letrozole for almost five years.

Around 80% of breast cancers are what’s known as oestrogen-receptor positive (or ER+). This means they need oestrogen to grow. The idea is that, by taking letrozole, any slow-growing or dormant cancer cells that may have survived chemotherapy (and/or radiotherapy) are starved of the oestrogen they need to grow and so they slow or stop growing and/or spreading to other parts of the body. Fingers crossed.

Now on to the biopsy.

I’d noticed there had been a change in the lump of scar tissue that had been there for a long time in my reconstructed boob under a scar from my surgery in December 2015. I’d had a right-side mastectomy, immediately followed by a reconstruction made essentially out of my own stomach fat. A “DIEP flap” reconstruction involves taking excess skin and fat from the stomach to reconstruct the breast. The lump of scar tissue was under one of the scars where the “flap” of abdominal skin is attached to the original skin of the breast.

Anyway, that lump had got bigger and harder and was causing some skin tethering. I decided to mention it to the consultant when I went to get the results of my bone density scan towards the end of last month. She had a good feel and decided the best course of action was an ultrasound scan. After doing the scan and quizzing me about the changes I’d noticed, the radiologist decided the best course of action was to biopsy the lump. There was no point in doing a mammogram as there’s next to no breast tissue there; it’s all tummy fat.

For my part, I decided the best course of action was to try and persuade myself not to worry in the period between having the biopsy taken and getting the results this past Tuesday. The worst-case scenario was that it would be a local recurrence of my breast cancer. Nobody had suggested that I prepare for bad news, but there’s always a sneaking doubt. After all, medical tests aren’t for checking that everything’s ok; rather, they’re to try and find out if anything’s wrong. That’s not just semantics, believe me.

I largely succeeded in my task. However, the fact that I kept my worry under control doesn’t mean I assumed things would be ok. Taking things for granted is a luxury I no longer have but I knew that worrying was not going to change the outcome of the biopsy. Of course I thought about it and of course I had visions of what my mind thought my life might be like if it were a bad diagnosis. But I’ve learnt not to dwell on negative thoughts – at least for not too long at any one time. It’s not always easy, but in terms of managing negative thinking, I’ve come a long, long way.

In the end, it turns out the lump is scar tissue, as we already knew, and fat necrosis, which is new. It’s not unusual for fat in reconstructions such as mine to harden.

At the end of April, a few days before I had the ultrasound, I went up to Scotland and, along with some some 6,000 other cyclists, did the Etape Loch Ness, a 66-mile, closed-road bike ride round Loch Ness that I’d signed up for last October.

What a stunning bike ride and what a beautiful day.

It was especially nice to do it with two of my brothers. I also managed to raise a few hundred pounds for Macmillan Cancer Support, which can only be a good thing.

Amid all this, I don’t think it’s an exaggeration to say a war has been raging in the media here in the UK over the value of routine breast screening.

The heated debate was prompted by the news that over a period of several years a computer flaw had led to up to 450,000 older women in England and Wales not being invited for what should have been their final routine NHS screening. Computer modeling suggested that up to 350 women may have had their life expectancy shortened as a result.

The experts had a field day. Some cried scandal and demanded that every single one of the affected women who were still alive be called for screening as soon as possible. Others insisted screening did not save lives overall and said that women who missed appointments should “carry on with their lives” and only contact their doctors if they experienced symptoms indicative of breast cancer.

No wonder people are confused and angry. It’s hard to accept things aren’t always black or white.

As for me, I’m not taking any chances. I’ll be going along to the next scheduled mammogram on my healthy breast, in December.

I hope things are quiet between now and then – and indeed that they stay that way.

 

A half marathon and feeling grateful

There I was at 10am this morning, running along the banks of the River Thames in the freezing cold, trying desperately to focus on something other than 1) just how bitterly cold it was and 2) the residual peripheral neuropathy I have in the balls of my feet and toes that’s a side effect from the chemo I had as part of my breast cancer treatment well over two years ago.

Peripheral neuropathy is a horrible mix of numbness and pins and needles; I’m mostly just vaguely aware of it but it gets considerably worse 1) when I’m running and 2) when it’s cold. It’s worse on my right foot than on my left.

Bit of a double whammy on the foot front, I was thinking as I ran.

I was only a couple of miles into the 2018 Hampton Court Palace Half Marathon and I knew it was going to go badly if I didn’t manage to divert my thinking to something more positive. So I started thinking about all the people who’ve helped and supported me through what I can only call the shitstormy periods of the past two and three quarter years.

Don’t get me wrong, some of that time has been brilliant. In fact, quite a lot of it’s been brilliant, but some of it’s been pretty damn tough. But it would have a lot tougher without the amazing support I’ve had, from many, many different people. Thinking about all that cheered me up no end. I started writing it all down here but it was getting so long that I decided it deserved its own blog post.

So what’s gone down over the past (almost) three years? Diagnosed with Stage III breast cancer (Stage IV is treatable but ultimately terminal) in July 2015, followed by seven months of treatment involving chemo, mastectomy and lymph node removal, and radiotherapy. High risk of recurrence and many, many months post-treatment trying to find a way of transferring my fear of recurrence from the front of my mind to somewhere less harmful. It’s sometimes still an issue, in fact. [The Scottish comedian Billy Connolly helped recently on that front. He’s got Parkinson’s disease and I heard him say not too long ago that his condition is the first thing he thinks about every morning when he wakes up so he makes sure his second thought is something nice. I bear that in mind when I feel that fear of recurrence creeping back.] Then, late last summer, just as I felt I was really moving on, I was diagnosed with malignant melanoma. Thankfully it was very early stage, but it involved two rounds of surgery to my right calf which amounted to several months of enforced inactivity.

Back to this morning’s run. Having spent an uplifting however long thinking how fortunate I was, I then focused on the fact that I was able to even contemplate doing this half marathon was cause for celebration. The wound from the surgery I had on my calf at the end of November had healed so well that I was able to start running again in mid-January.

There are a lot of people to thank for a lot of things, as you’ll be able to read when I get round to writing them all down. Special thanks, however, goes to my husband Andy, who surpassed himself today – as he has done so on so many occasions over the past few years. Not only did he drive me to Hampton Court Palace this morning at 7.45am, he also came to pick me up at the train station on the way home –  with a flask of steaming hot soup. I can’t describe how welcome that was. To give you some idea of just how cold it was, it took me 20 minutes after I’d finished the half marathon before I had enough feeling in my fingers to be able to use my phone.

Andy would have been to cheer me over the finish line too but I’d said I didn’t want that.

As everyone will know, the brilliant astrophysicist Stephen Hawking died this week at the age of 76. He’d been diagnosed with a rare form of motor neurone disease as a young adult and was told he’d be dead in a couple of years. He’s quoted as saying: “My expectations were reduced to zero when I was 21. Everything since then has been a bonus.”

I was 52 when I was diagnosed with breast cancer. My expectations were far from reduced to zero, and not everything since then has been a bonus. I’m pretty sure it wasn’t for Stephen Hawking either after his initial diagnosis. Having run a good part of 13.1 miles this morning contemplating the good things in my life, though, I know where he was coming from.

Approaching my two-year milestone with mixed emotions

The highest risk of recurrence for women who’ve had the type of breast cancer I had is during the first two to three years following treatment so it’s clearly a big deal that I’m approaching the two-year mark. I finished treatment at the end of February 2016 and while I don’t want to tempt fate by speaking too soon, the start of a new year seems as good as time as any to put a few thoughts on page.

In broad terms, risk of breast cancer recurrence reduces over time, but it never completely goes away. And – at the risk of folk complaining that I’ve said this a hundred times before – if it comes back away from the original site, it’s treatable but it can’t be cured and it’s therefore ultimately fatal. And I’m at high risk.

With the type of breast cancer I had, the risk falls after two years, and it falls again after five, which is why many survivors (for want of a better term) celebrate their five-year “cancer-free” date. If you plotted it on a graph, however, the “tail” would be never-ending. As many recurrences happen after the first five years as happen before (see Recurrence 1).

Some days I think about it a lot; other days hardly at all. For an example of the latter, take a couple of weeks ago – December 19th, to be precise. It was twenty minutes to midnight before I realised it that was the two-year anniversary of my breast cancer surgery. I was stunned – in a good way – that almost the whole day could go by without me being aware of its signficance.

This was particularly surprising as I’d been thinking at lot “about my breast cancer and me” – the subtitle of my blog – at around that time. Just a week earlier, I’d had the second of the five annual post-treatment mammograms and ultrasounds I’m to have. Everything was normal. When I saw the consultant breast surgeon for the results, we talked about the importance of the two-year milestone. He was clearly very pleased, but it really brought back to me the seriousness of the whole thing.

Almost every night before bed for the past two years – I really have only missed on one or two occasions – I’ve assiduously taken a little yellow tablet containing a drug called letrozole. There’s some evidence that this daily hormone therapy that I’m on to reduce my risk of recurrence should be taken for ten rather than five years.

So are we looking at staying on letrozole for ten years?, the breast surgeon ventured at that appointment in mid-December. I looked at him, my mind suddenly thrust into overdrive as I realised I was finding it impossible to think eight years ahead. I had to answer. Let’s take it a year at a time, I said.

It’s hard to speak in absolutes as no person is the same and, as I’ve said before, statistics are only statistics. That said, NHS Predict, an online tool that estimates how any one woman may respond to additional breast cancer treatment, suggests that taking letrozole reduces my risk of recurrence by almost as much as the chemotherapy I had.

For as long as I can, then, I guess I’ll be taking letrozole. Or rather, for as long as I safely can. It’s complicated. For the moment, I’m one of the lucky ones who seems to have minimal side effects. Lots of women come off letrozole and other similar drugs because the side effects – including fatigue, bone and joint pain, hot flushes – are debilitating.

Importantly, letrozole increases your risk of developing osteoporosis. We’ll be able to what effect it’s had on me on that front in March, when I have my first bone density (or DEXA) scan since starting on the drug in January 2016 (see One down, just 3,652 to go). A scan done at that time showed I had good bone strength, so at least we started from a high baseline.

Nearly two years out of treatment, I look back and feel grateful I’m still here. As for looking forward, well I do that too, if not with confidence, then at least with pragmatism and indeed enthusiasm.

For a while I found it very hard to look forward with anything other than fear. Gradually, though, things got better (see And time goes by). Then things then got complicated again, when I was diagnosed with very early-stage melanoma at the end of August last year (Melanoma? You’ve got to be kidding). At this precise moment, I’m recovering – extremely well – from a second round of surgery I had on my right calf at the end of November relating to that.

Eight years is a long time in anyone’s book, not just mine. I may not manage ever to look that far ahead, but that’s ok. The next few months are busy enough, starting with a big family reunion up in Scotland later this month.

On the sporting front, I’ve signed up to the Hampton Court Palace half marathon on March 18th and to a 66-mile bike ride round Loch Ness at the end of April. I’ve been out of action for a while due to the surgery on my calf (hopefully I’ll be exercising again by the end of this week), so getting fit for these will be quite a challenge. Unlike with cancer though, these are the kinds of challenges I love.

Here’s to the end of February and well beyond. Very best wishes to all for 2018.

Bish, bash, bosh? No such luck

It’s finally been decided. On November 28th, I’m to have a second round of surgery on my right calf where I had a melanoma – thankfully very early stage – removed a couple of months ago.

This second procedure will involve cutting out a chunk of healthy skin and tissue from around the site of the original melanoma and, unfortunately, a skin graft and being left with a shark bite-like scar on my leg. Nice.

So much for hoping I’d get away with essentially being diagnosed and treated on the same day (see previous posts). Bish, bash, bosh? Wishful thinking indeed on my part.

The melanoma was completely removed in the original excision. That’s the main thing. However, they didn’t quite get the full 1cm of healthy tissue around the cancer – “the clear margin” – that the treatment guidelines recommend. In case there are skin cancer cells lurking there that are too small to be seen by a microscope, they take a margin of – seemingly – healthy tissue to reduce as much as possible the risk of the melanoma coming back or spreading. Having been treated previously for breast cancer, I know how much that matters.

I’ll have the surgery under general anaesthetic, as an outpatient.

As for the skin graft, well this time round there won’t be enough skin to pull together and close with stitches. The plastic surgeon will take a layer of skin from my inner thigh with a device that looks a bit like a very sharp potato peeler, place the donor skin over the new wound, stitch it in place then bandage it all up. Apparently after the op the donor site can hurt more than the skin graft site.

I’ve to “take it very easy” for the first few weeks after the procedure to give the graft the best chance of “taking”. You don’t even want to think about what happens if it fails.

The bandages are removed a week later and the stitches a week after that.

So, two or three weeks of as much rest as possible and my leg raised while resting, followed by three months (at least I think that’s what the surgeon said) of wearing a compression stocking on the affected leg.

That means yet another extended period of enforced lack of exercise. You’d think I’d be getting used to it by now, but I’m really not. I’m shelving any plans I had to better my current personal best in the 5k Parkrun I’d got used to doing every Saturday morning in my local park. When the time comes, I’ll just be grateful to be running again. Tennis and cycling will also be off the radar for a good while. At this rate, I’ll consider myself lucky if I get to go skiing on the skiing holiday I’ve booked at the end of January.

I know I’ve really got no choice, but it does all seem rather drastic for something that I keep being told is “purely precautionary” and over which there’s apparently no rush to do.

That said, I know from previous experience that you don’t mess with cancer. I’m not going to be the one who says “let’s not bother and just hope for the best”.

I know the key things by far are that the melanoma was very early stage (1a) and that it was completely excised first time round. Even so, I think I’m entitled to a bit of a moan.

The week before I have this second procedure, I have my three-month follow-up with the consultant dermatologist who diagnosed me initially. Also, I’ll have to postpone by at least a week the annual mammogram and ultrasound that I have because of my earlier breast cancer. The appointment’s been in the diary for early December for six months now. I’ll still be resting at that time and trying to keep any walking to an absolute minimum.

It all feels too weird. Never in my wildest dreams did I think I’d be postponing follow-up tests relating to one cancer because I was having treatment relating to another.

Friends aiming to sympathise say it doesn’t seem fair. We all know life doesn’t work like that. But you know what? I tend to agree with them. I’ve a lot to be grateful for – not least the fact I’m writing this while on an incredible two-week holiday in Cambodia – but, as I’ve said before, you don’t always have to be grateful it’s not worse.

There’s a fuss about the chemo I had, so why aren’t I more worried?

There’s a big fuss around the chemotherapy regime I had as part of my breast cancer treatment almost two years ago.

Some early-stage research has suggested that while the chemo drugs I had – given before surgery, as they were in my case – shrink breast tumours in the short term, they could in some cases make it easier for cancer cells to spread to other parts of the body. The implication is that the very drugs that are meant to kill off any cancer cells that have already spread from the original tumour by the time you start chemo may actually make it easier for cancer cells to migrate in the first place.

Now isn’t that just bloody brilliant? The thing is, though, I just can’t bring myself to be too worried about it. It could be years before we find out for sure. Even if I wanted to, I can’t change the treatment I had and, for the moment at least, there’s no suggestion that getting chemo before surgery (pre-operative or neoadjuvant chemo) has worse outcomes than having after (post-op or adjuvant) chemo.

Cancer recurrence is a sensitive topic. Many people – myself very much included as you’ll know if you follow this blog – who have been successfully treated for primary breast cancer feel they’ll never escape the fear their cancer will one day return. They worry that cancer cells from their original tumour have spread and are “hibernating” in their spine, say, or their lungs, where they will one day wake up and form a new tumour or tumours. This is known as secondary or metastatic breast cancer. It’s a valid fear, as well over 11,000 women, and also some men, die of this every year in the UK alone (Recurrence 1). It can’t currently be cured. If you follow my blog, you’ll know I’m passionate about raising awareness around this issue.

Anything that suggests that treatment for primary cancer could in fact cause the original cancer to spread will always cause concern. It’s therefore not surprising that this study – or rather some of the reporting around it – has made a lot of women very worried.

I’m at high risk of developing secondary breast cancer (Recurrence 2). However, in common with many women who’ve been through treatment for primary cancer and are fortunate enough to be living with “no evidence of disease”, I’ve somehow learned to deal with that fear of recurrence so that it’s no longer almost the only thing I think about. I’m very glad the findings didn’t come out while I was undergoing chemo in the latter half of 2015. It was such a tense time and this would only have heightened my anxiety. If it had happened this time last year even, I’m pretty sure I’d have been beside myself with worry.

The researchers who carried out this latest study are reported as saying: “Our finding that chemotherapy, when given in the setting of clinically active disease, may promote cancer cell dissemination, is of major concern.” Another article about the study quotes an oncologist as saying: “I am willing to keep my mind open to the possibility that there are some breast cancer patients in whom things get worse” with pre-op chemo. No wonder people are worried.

There’s a need to keep things in perspective, though. At this stage, there’s no suggestion that having chemo before surgery is less beneficial than having it after. The authors themselves are careful to say that “large clinical trials indicate that the long-term outcome in patients treated in adjuvant post-operative compared to neoadjuvant pre-operative chemotherapy is comparable”. It took a bit of digging to find this out, but it seems the researchers have developed a test that claims to be able to predict when the reaction they describe is likely to occur and they’re looking at whether a particular drug might treat it when it does or even prevent it from happening.

I’m doing a 100-mile charity bike ride at the end of this month to raise funds for the breast cancer research charity, Breast Cancer Now. Breast Cancer Now said of the study on Twitter: “This is very early-stage research and we don’t yet have enough evidence to confirm whether any type of chemotherapy may spread cancer.”

Most women with breast cancer who have chemo have it after surgery. When my oncologist suggested I do it the other way round, I wanted to know why (Understanding your chemo regime). I was told among other things that the evidence was not yet there, but the expectation was that this neoadjuvant approach ultimately would be shown to improve long-term survival rates. I’m hoping that still turns out to be the case. It might not, though.

After finishing treatment in February 2016, I had many anxiety-filled days, nights, weeks and months when worrying about recurrence was the backdrop to my existence. I’m in a different, more accepting place now. I’ve written extensively before about how the fear of recurrence never goes away (most recently here and here) but that you can and do move on (as long as it doesn’t come back, obviously). I think this shows that, for the time being at least, I’ve done all the big, all-encompassing, energy-sapping worrying I can do on this.

Time passing is not the only factor. There’s also an element of fatalism at play. I can’t change the treatment I had. All I can do is enjoy life, live healthily, pay it forward. I don’t mean to sound blasé. I have an intense interest in all new research concerning breast cancer recurrence. Estimates suggest that as many as one in three women who are successfully treated for primary breast cancer go on to develop incurable secondary or metastatic breast cancer. I still find that shocking. We need to know what causes cells to spread and form new tumours if we are to find ways of stopping it from happening.  Incidentally, cancer cells that have spread may never turn into tumours, another point that should be borne in mind with regard to this latest research.

What this shows is that medicine is constantly evolving. There have been huge advances in the diagnosis and treatment of breast cancer in the past couple of decades as there will undoubtedly be in the next two. Along the road, we may discover things we don’t like, possibly relating to our own treatment. That’s how progress works. We can only hope we’re getting the best there is at the time.

Breast Cancer Now’s aim is that by 2050 no-one will die of breast cancer. My training for the 100-mile charity bike ride through London and Surrey on July 30th is going well. I’ve been overwhelmed by the generosity and support of those who’ve already sponsored me. If you’re one of them, I’d like to say a huge thank you. If you’d like to join them and in so doing help support the research Breast Cancer Now is funding, please don’t hold back. You can read my story and sponsor me here: https://www.justgiving.com/fundraising/maureen-kenny.