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 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.

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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.

 

Melanoma? You’ve got to be kidding

If you focus all your energies on one particular worry – in my case that the breast cancer I’d been treated for successfully might come back – you kind of forget about all the other serious diseases you could get. Such as melanoma. Or to be more specific, malignant melanoma. Yes, that’s right, skin cancer. And not just any skin cancer; malignant melanoma is the “rarest but the most serious of all skin cancers”.

I have just had a malignant melanoma removed from my right calf. A large, dark brown patch (about 1 cm x 1.3 cm) that I swear had been there for as long as I can remember was in fact very early stage skin cancer. Having cancer once is bad enough. But twice? That’s not carelessness, as George Bernard Shaw might have said. It’s just rubbish. Luckily, this cancer was caught at a very early stage; that means there’s very little chance of it coming back or of it having spread.

I’d spent (wasted?) countless hours since I finished treatment for primary breast cancer at the end of February 2016 worrying about the possibility my breast cancer might come back and that I’d ultimately be one of the more than 11,500 women who die of the disease in the UK every year. I’m at high risk of recurrence because of the stage my breast cancer was at when I was diagnosed (Stage 3a). Following a lot of effort, I’d more or less succeeded in putting my fear in a box in my brain marked “do not disturb” and firmly shut the lid. Emotionally, I was moving on very nicely. Physically, allowing for age, I was probably fitter than I’d ever been. I’d done a 10-mile run in June and a 100-mile charity bike ride at the end of July (Job done).

In short, I was feeling great. Then, not even a month after the bike ride, I’m hit with a melanoma diagnosis. That was really not in the plan.

I was aware this “irregularly pigmented lesion” on my leg was there but at no point, I repeat at no point, did I think it might be anything nasty. So much for awareness. A colleague at work noticed it and remarked that it was “big”. That set alarm bells ringing. I got an appointment with the GP, who referred me to a consultant dermatologist. Unlike the breast cancer where I suspected the worst by the time I consulted a doctor, at no stage this time did I seriously think there might be something wrong. However, when the consultant examined me, she diagnosed the lesion almost immediately as “probable melanoma”. She didn’t mess around with a biopsy that would have confirmed it one way or the other. Instead, she had a plastic surgeon remove the suspect patch and an area of surrounding skin and tissue – in a procedure called a wide local excision – that same day.

Not only that, the dermatologist had the surgeon take some skin from another, much lighter, area on my upper left chest near my collar bone to be biopsied.

The patch on my leg turned out to be very early – Stage 1a (at least I think it is, I’ve worked that out myself) – melanoma. The patch on my chest turned out to be clear.

Melanoma’s not like breast cancer where we know what the risk factors are but don’t know precisely what causes it. It’s pretty much accepted that the leading cause of skin cancer by far is exposure to ultraviolet radiation from the sun and sun beds or lamps (surely these should be banned?).

I guess the seeds were sown in my childhood, youth and young adulthood. I was a pale Scot with lots of freckles who burned easily. But I tanned and I loved the sun, loved sunbathing and loved getting a tan. I studied French and Spanish at university in Glasgow and spent my summers in the south of France, the Costa del Sol or Mallorca. I followed this with three years in Madrid. Severe sunburn, blistering, sun beds – been there, done that. We’re stupid when we’re young, aren’t we? In fact a lot of us are still stupid as adults.

In later years, I started appreciating the risks more and became so much more responsible. I couldn’t have been more careful. I’m 54 now and, while I still love the sun, it’s been decades since I’ve done what you would call sunbathing, ie deliberately lying out under a hot sun for hours on end. I would love to lie out, but I don’t. It’s as simple as that. I am so careful. I’m outdoors a lot (tennis, cycling, running) but I always splash on the sun cream – most often Factor 50 and, if not that, Factor 30 (why is there no Factor 40?). I’m the one who’s always offering sun cream around and my two sons will tell you I’m a real nag on this particular issue. They’ll tell you I’m a nag on a lot of things but they know on this one I really mean it.

But I guess the damage was already done. I have to say that, given the battering I let my skin take when I was younger, I’ve thought for years now that I’d be lucky not to get melanoma at some point. Even when the evidence was there, though, I failed to see it. It took a colleague/friend at work, to whom I will be forever grateful. You’d think I’d have learned after the breast cancer. It’s starting to look like I have some sort of death wish. Trust me, I really don’t.

Is this second cancer, though, in some way linked to the fact I had breast cancer? Did the breast cancer itself or the treatment I had somehow enable something that was perhaps already there, simmering away with “malignant intent” (great phrase from a doctor friend), to start growing? I’ve no idea, but the American Cancer Society says that while the most common second cancer in survivors of breast cancer is another breast cancer, they’re at a higher risk for certain other types of cancer, including – wouldn’t you know? – melanoma.

I have no idea how long this brown patch that’s been removed had been there for. I’d have to say years but I have no idea how many. I have no idea whether it’s changed colour, how big it was when it first appeared or by how much it’s grown or over what period. It’s much the same with the patch that was biopsied. I felt such an idiot not being able to answer any of the consultant’s questions with anything remotely approaching certainty. Again, so much for awareness.

As with breast cancer, melanoma survival rates and the risk of it coming back and/or spreading to other parts of your body vary according to the stage of the disease at diagnosis. Like all cancers that can spread, the earlier it’s caught the better. Most patients with a Stage 1 diagnosis don’t have further recurrence of their melanoma once it’s been treated. It still sucks, though. Not only can melanoma come back or spread to other parts of the body, people who’ve had melanoma have an increased risk of developing certain other cancers. I don’t mean to be flippant but, come on, spare me a third.

I’ve to go back to the dermatologist for regular checks for at least the next year. I’ve to be on a constant look-out for melanoma coming back in the same place or appearing elsewhere on my body. If I was careful in the sun before, I’m going to have to be ultracareful from here on in.

The melanoma was removed under local anaesthetic. I’ll have a scar around two inches long across the back of my right calf. I had the procedure on August 29th and I got the results a week later. Thankfully, the melanoma was very thin. It won’t have grown deep enough into the skin to allow the cancerous cells to break away and spread. So there’s no need for any further testing – of the lymph nodes in the groin, for example, which is where it would spread to first. Another positive is that the “mitotic rate” – a measurement of how fast tumour cells are dividing – was zero.

That’s not quite it, though. The aim of a wide local excision is to remove a margin of healthy tissue all around the melanoma along with the melanoma itself.  I’ve been told that while it’s unlikely, I may need a re-excision, in which case the plastic surgeon would go back in and cut some more tissue out. I’m hoping it won’t be too long before I find out one way or another.

I’ve learnt a lot about how to deal with worry and anxiety over the past couple of years, but getting a second cancer diagnosis is no joke. Waiting to find out what stage the melanoma on my leg was and whether that second patch on my chest was also cancerous and would need cutting out wasn’t much fun. My husband says there were lots of periods when I’d go quiet, followed by long exhalations of breath. I think I can be excused that.

When I was diagnosed with breast cancer in July 2015, I was told more or less straight away that I’d need chemotherapy, a mastectomy and radiotherapy. I knew treatment would be gruelling and would last seven or eight months. With this, if I don’t need a re-excision, I’ll have been diagnosed in the morning and treated in the afternoon. If I’m lucky, that’ll be it… physically at least, emotionally it’s not quite that simple.

I thought long and hard over whether to go public on this. I decided to do so in the name of raising awareness (that old chestnut). Check yourselves, people – there’s an easy ABCD guide: A (asymmetry), B (border), C (colour) and D (diameter) – and take precautions to reduce your chances of developing melanoma in the first place. According to Cancer Research UK, melanoma is preventable in around 86% of cases. For breast cancer, it’s 27%.

To give the wound on my leg the best chance of healing well, I’d to sit with my foot raised in the three days following the procedure and I’ve to avoid strenuous exercise for four weeks (or more, depending on how the healing goes). So no sport at least until the end of September. For those of you who know me, you’ll know what torture that is. I’ve had to cancel four tennis matches that were already in the diary, one of which in particular I was really looking forward to playing. The day before I was diagnosed, I went for an hour-and-a-quarter run. The day before that, I did a 30-mile bike ride.

I’m gutted at not being able to do the 5k Parkrun I do almost every Saturday at 9am on the local common. So much for having set myself the target of beating my personal best time by the end of September. I guess it’ll have to be October or November now, or perhaps even December.

Because instead of focusing on the – frankly-terrifying-if-you-think-about-it-too-hard – notion of two cancer diagnoses in just over two years, you’ve got to, as the old song goes, pick yourself up, dust yourself off, and start all over again. It’s easier said than done, but I’ll give it a good try.