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.

 

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Approaching my two-year milestone with mixed emotions

The highest risk of recurrence for women who’ve had breast cancer is during the first two 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.

Laying to rest the ghosts of mammograms past (and making up for a cancelled bike ride)

I’ve had a couple of weeks of laying old ghosts to rest.

First of all, I got the results of the review of the clear mammogram I had in October 2014, nine months before my diagnosis with Stage IIIa breast cancer (The details) in July 2015. The review found nothing remotely suspect in the original images; nothing was missed. The tumour I had in my right breast therefore grew from nothing – or at least from being undetectable on a mammogram – to probably bigger than 5cm* and out into the lymph nodes in my right armpit within the space of eight or nine months.

Secondly, I did a two-day bike ride that a friend and I had said we’d do together once my treatment was over and I felt up to it. This was to make up for my having had to cancel a long-distance bike ride to Brussels last September as by then I’d started chemo.

Clear mammograms

The results of clear mammograms that are followed by so-called “interval” breast cancers – ie cancers that are diagnosed between routine mammograms – are reviewed as a matter of course and the women notified of the results. I don’t know how soon after the fact the reviews usually take place but a couple of months ago I went ahead and requested that mine be done.

I had two mammograms in the 18 months preceding my diagnosis, one in January 2014 and one later that same year, in October (So you think you’re breast aware). Both were reported as clear at the time and, following the review that’s just been done, nothing has changed. The consultant radiologist who went through the results with me two weeks ago yesterday said that the team of five reviewers, four of whom were also consultant radiologists, could see “no malignant features or subtle signs of cancer” in the images. The official classification is “Category 1: normal/benign features”.

At least now I’ve got the results. This had been on my mind ever since I was diagnosed. I can now draw a line and move on.

It’s hard to predict the rate at which tumours grow. My cancer was Grade 3, the most aggressive grade. I’d known it was possible for the tumour to have grown within the space of eight to nine months to the size it was when I was diagnosed (it won’t surprise you to hear I’d discussed it with my oncologist). Nonetheless, I found getting the results of the reviews very upsetting. I’d been proactive in ensuring I was screened. I thought I was pretty “breast aware”. I felt, however misguidedly, that to be diagnosed with Stage IIIa breast cancer (after Stages IIIb and IIIc comes Stage IV, which is incurable) after having had two clear mammograms was not just ironic but massively unfair. I’d been doing pretty well with the whole “looking forward, moving on” thing, but this brought everything back. I felt I was in the middle of it all again instead of almost seven months out of treatment. The consultant and the breast care nurse who was also at the meeting were very sympathetic.

Of course I’m pleased that nothing was missed. If I’m completely honest, however, I think that if things had gone the other way a tiny, tiny part of me would have been relieved that I could put at least some of the “blame” for my cancer having got to Stage IIIa by the time I was diagnosed on something or someone else other than myself. People have said I did well to act when I did but I will always wonder whether I could and/or should have acted sooner. The further I get from last July, though, the less I’m able to remember how long I might have been wondering whether something was wrong. Anyway, you can’t change the past but you can change how you feel about it. There’s no point beating myself up about something I can’t change.

I turned 50 in July 2013 and, instead of waiting to be called in for a routine mammogram under the NHS breast cancer screening programme, towards the end of the year I phoned and asked for an appointment. I had my first mammogram in January 2014. They kept me on the system and nine months later, in October, I had what would have been my routine mammogram.

Mammograms are no more than a snap shot of a moment in time and screening picks up around one third of breast cancers. Considerably more breast cancers are found by women themselves than are found through routine mammograms so what happened to me is not unusual. I do wonder whether having had two clear mammograms in relatively quick succession gave me a false sense of security. Also, I wonder at which point my tumour would have shown up in a mammogram before I’d have been able to feel it. What if I’d had that second mammogram three or two months or even one month later? Would it have shown up then, when it was perhaps at an earlier stage? If it’d been found earlier, my risk of recurrence would be lower than it is and perhaps I wouldn’t have had to have so much treatment. I know better than to dwell on thoughts such as these but I don’t stop having them in the first place.

Bike trip
There are only so many tears you can cry in one day so a few hours after getting home from the review meeting I finally called a halt to my pity party for one. pity-partyThat evening I headed off to the pub to meet my friend Juliette to plan the bike ride we’d be doing the following week in the New Forest in Hampshire. I’d done a 63-mile bike ride with Juliette just days before I was diagnosed and, at some point after I’d cancelled the long-distance ride to Belgium that was planned for last September, Juliette suggested we do a trip together the following summer to make up for it. bikesAnd so we did. And what a fabulous couple of days it was.

Getting the results of the mammogram reviews helped me put one ghost to rest. Two days last week spent cycling in the sunshine through forests and along coastal roads, and past ponies, thatched cottages and duck ponds, enabled me to put another one to rest. I’d been worried about how long it might be after surgery before I’d be able to cycle long distances again… or indeed whether I’d be able to do such bike rides at all (Stopping the downward spiral). So a huge thanks to Juliette.

yorkshire-dalesThere’s more. The day after I got the results of the mammogram reviews, Andy, the boys and I headed up to Cumbria and Yorkshire to join our friend Dave Clark on a 14.5 mile leg of the 200-mile coast-to-coast trek from the Lake District in the west of the country to Robin Hood’s Bay in the east that Dave had started out on a few days earlier. Dave was diagnosed with Parkinson’s five years ago. He’s just turned 50; I’ve mentioned him before (Don’t wait for the rain to stop, dance – or cycle – in the rain).

Dave completed the walk in 13 days (https://www.justgiving.com/fundraising/ClarkysC2C, #ClarkysC2C & http://bit.ly/2dswuyQ) in an effort that was nothing short of heroic, helping raise £100,000 for Parkinson’s UK along the way. I’m sure Dave has his dark days but every step of that walk was life-affirming and a lesson to us all that what matters is the present and that making the moment count beats the hell out of dwelling on regrets about the past or worries about the future. This post’s for you, Dave.

*While my tumour was estimated to be probably bigger than 5cm, we never found out the precise size because I had chemo before I had surgery. I had such a positive response to the chemo (A busy week with welcome news – “no mass identified” and “no further surgery necessary”) that by the time I had my mastectomy there was essentially nothing left of the tumour to measure. Can’t complain about that although at the time it did freak me out that I’d never know the exact size of the beast growing inside me.