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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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 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.

A good news update

Now this is the kind of update I like to post. Yesterday’s re-excision went really well; they managed to close the new wound on my right calf directly so I got away without having to have a skin graft. Now that is what I call a result.

This second procedure involved as a precautionary measure cutting out a chunk of healthy skin and tissue from around the site of the original, very early-stage melanoma that I had removed at the end of August (Melanoma? You’ve got to be kidding). The margin of healthy tissue around the cancer that we got first time round fell short of that recommended in the treatment guidelines for melanoma and so a second re-excision was needed. A skin graft had been on the cards since I was told in early September that I might need a re-excision. It was later confirmed this would be the case (Bish, bash, bosh? No such luck). However, I got an email just last week saying the plastic surgeon would in fact try and close the wound directly and would only do a skin graft if that didn’t work.

I knew there were no guarantees. Having heard that, however, it was impossible not to get my hopes up. I was marked up before surgery to have the donor skin taken from my outer right thigh in case a graft were needed (the photo on the left shows the arrow pointing to the donor site) and it was pretty weird going under the anaesthetic not knowing what the outcome would be. I’m delighted to say the non-graft option worked. Twenty-four hours later, I’m sitting here at home on the sofa with my leg up feeling very relieved and happy.

I was told the good news as soon as I came to after the op; I don’t know whether I’d already started moving my hand down to feel my right thigh to find out for myself or whether I did that as I heard! You’re a bit groggy when you first wake up but I’m pretty sure the person who told me said the wound “closed beautifully” – although later, as he was warning me that I had to take it really easy for a while to give the wound a good chance of healing well, the plastic surgeon said it was “tight”. I’m taking no chances. Rest has been ordered and rest is what I’ll do. I see the surgeon in a week’s time and he’ll check the wound. In the meantime, I’ve to keep the dressing dry, so no showers but I can have a bath with my leg hanging over the side. I can do that.

So, I’ve been spared a skin graft. It doesn’t sound much and I know a great many people have far more serious things in their own lives to worry about. But it’s like a weight’s been lifted from me. I feel like I’ve been given a bit of a break after what’s been a stressful few months – which included, mind you, the very welcome distraction of a fortnight’s holiday in Cambodia. It sounds ungrateful but if I’m honest, with this hanging over me, I was ambivalent about going right up until I left. It was, of course, amazing. A massive thanks to Peter, my brother, for the company and for sharing the adventure.

I know that if there are problems with healing, we may still have to go down the skin graft route, but this is a good position to be in. I’m trying – not very successfully, it has to be said – not to look too far ahead, but here’s to a speedy and successful recovery.

A funny thing happened in the hospital. There I was, lying on the bed in my 1st-floor room before surgery, when I heard some strange noises outside, seemingly very close.  I turned my head… to find a window cleaner hard at work! We had a nice little chat through the glass. He said how cold it was; I asked if I could take his photo as this was one of the most amusing things that had happened to me. His unexpected visit certainly took some of the pre-surgery tension away.

Another thing, the anti-DVT stockings you have to wear after surgery were white when I was last here. They’re green now but they’re as unflattering as ever. It seems longer but it’s only two years since I had major breast cancer surgery at this same hospital. I had to sport the white stockings for quite some time afterwards (The least sexy washing line ever). Now I wasn’t planning on ending this upbeat post on a morose note but I have to say I really hope I never get to find out if those stockings change colour again.

On with the healing.

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.

Things are moving… finally

Things are finally moving again, which is good. I was right. My case had got stuck in the system. I chased it up and kept asking for answers until I got them.

My case will now be assessed on October 26th for a second opinion on whether a re-excision is needed on my right calf where a very early-stage melanoma was removed at the end of August. That’s nearly six weeks after I was told a second opinion would be sought. I know there’s no rush and my case is borderline, but that is quite a long time. I’ve been assured “it’s not usually like this”.

The issue is that while the melanoma was removed, they got slightly less healthy tissue from the area surrounding the melanoma than the guidelines recommend (Things are rarely straightforward). I’ve been told again that a re-excision – a narrow one – is probably what will be recommended so they do in fact get the full 1cm clear margin that the guidelines say we should have. It’s precautionary, but better safe than sorry. I’m happy with that. I’ll meet with the plastic surgeon to discuss the results and next steps on November 1st. As I said, there’s no rush. If a re-excision is indeed what we decide on, it can wait until after I get back from the two-week trip to Cambodia that I’m going on with one of my brothers on November 2nd. Yes, yes, it’s a complete self-indulgence but if there’s one thing I’ve learned from the whole breast cancer experience, it’s that life is for living.  If you can, then why not.

The leg wound is now well on the mend and I’m exercising again. I did my local 5k Parkrun last Saturday – my slowest time in well over a year after seven weeks of enforced inactivity – and I’ve been back on the tennis courts. I have four tennis matches planned over the next seven days. I’m clearly making up for lost time.

I’ve been thinking about how I’m feeling about this whole melanoma thing. It’s strange. I was pretty shell shocked initially (Melanoma? You’ve got to be kidding), as you’d expect. Now I’ve got my head round it, I’m at the stage where I see it as more of an annoyance than anything else. Friends who are only finding out about it now are more upset and outraged than I am. I know if this were a first cancer diagnosis I’d be freaking out and I know too that melanoma’s known as the nasty skin cancer because it can spread very quickly. But I really do feel I’ve got off lightly. Cut it out and hopefully that’s it. A possible re-excision? That’s ok too, although a skin graft would not be great if that’s what’s needed – I’m hoping it won’t be.

Perhaps I’m being naive. Or perhaps it’s sheer relief that it was caught so early. That’s not to say I’ll be able to just brush it off. I’m already looking at a couple of freckles/moles/brown spots – call them what you want – and wondering how long they’ve been there or whether they’ve always been that size. But I just cannot “do” worry the way I did with breast cancer. I know how destructive it is; I can’t do that again.

Let’s see what November 1st brings. Re-excision or not, skin graft or not, I’ll be taking my running shoes to Cambodia.

Things are rarely straightforward. Still waiting.

It’s been over a month since we got the histology results for the melanoma I had removed from my right calf at the end of August and I still don’t know for certain whether I’ll need a second procedure.

There’s no doubt that “we” (for want of a better term) got all the melanoma. “Completely excised,” reads the report from September 4th (I was told on September 5th). However, we didn’t get quite as much healthy tissue from the surrounding area as the guidelines recommend. That said, because the melanoma was so thin, and also it seems it’s not an exact science, it could be that what we did get might be considered enough.

Because it’s not clear cut (no pun intended), the doctor(s) involved in the initial diagnosis and procedure asked for a second opinion. I am, of course, more than happy with that but the second opinion – or rather the official second opinion – hasn’t been forthcoming. While the plastic surgeon has been told they will recommend a re-excision, we’re waiting for official word before we make any decisions. That also makes sense but we’re still waiting. And it’s not clear to me why that’s the case.

I had a wide local excision on August 29th (Melanoma? You’ve got to be kidding).  The surgeon cut out what turned out to be a very thin melanoma along with a “safety margin” of healthy-looking tissue around the lesion. The purpose of the safety margin is to remove both the primary tumour and any melanoma cells that might have spread into the surrounding skin. The recommended margins, both at the edges and in the depth, vary depending on the thickness of the tumour. Thicker tumours need larger margins. The definition of thin is a thickness of less than or equal to 0.5mm; in my case it was 0.3mm. Very thin by any normal measure and thankfully in melanoma terms too. I couldn’t be more relieved at that result, but it turns out there’s a question over the margins. Thus the need for the second opinion.

Things are rarely straightforward.

Also, the wound has taken longer to heal than it could have done so I still haven’t been able to get back to exercising. Your calf is not a good place to have a wound as basically you’re putting stress on it with every step. We’re nearly there, though… although if another excision is needed we’ll be back at square one.

The main thing is that the melanoma was thin. I understand a second procedure, if that’s what’s decided, would be a precautionary measure – albeit with potentially considerable consequences on a practical level if it involves a skin graft, as I’ve been told it may well. I also understand that you have to wait until the original wound is “safe” before you re-excise. However, regardless of when we’d do it, I’d really like to know for sure whether it’s happening or not.