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.

 

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.