Approaching my two-year milestone with mixed emotions

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

What does follow-up look like?

So what happens now? What does follow-up look like now that I’ve largely been signed off by the consultants who’ve been treating me for varying lengths of time since my breast cancer diagnosis one year ago this very week?

At around the one-year anniversary of my surgery, in mid-December, I’ll have a mammogram and an ultrasound scan on the good boob (if you’ve had cancer in one breast you’re at increased risk of getting it in the other) and an ultrasound scan on the reconstruction (there’s no point in having a mammogram as there’s no, or next to no, breast tissue there). The plan is that I’ll have those tests anually for at least five years.

I’ll have my next and third round of the bone hardening drug, zoledronic acid, in September. I’ve changed from having that every three months to every six and the plan is to continue on that basis for the next couple of years. I’m on letrozole, daily hormone therapy. Letrozole lowers oestrogen levels in the body and so increases your risk of developing osteoporosis. The bone hardening drug is to counteract that. It’s also been shown to reduce the risk of the cancer coming back in post-menopausal women like me.

I’ll have a bone density scan once I’ve been taking letrozole for two years to measure the effect letrozole has had on my bones so far. The scan I had before starting hormone therapy showed I had strong bones to start with, which is good.

And that’s it.

Or is it? This follow-up plan only works, of course, as long as there’s no recurrence. If that happens, all bets are off, as you’ll know from posts I’ve already written. In between your formal follow-up scans and whatever other ongoing treatments and/or appointments you have, you need to stay aware of the symptoms of secondary breast cancer, not panic at every ache or pain but get any worrying signs checked… and hope like hell that the concern that led you to go and get checked was misplaced and that you are in fact still cancer free.

 

 

Starting to feel free again

The consultants who’ve essentially been in control of my life for the past seven months have done what they needed to do in terms of treating me and are now starting to sign me off. I’m beginning to feel independent again. It’s a good feeling.

I was at the clinic this past Monday for physio but before that I hadn’t been there for a whole two weeks. A fortnight is not so long in the broader scheme of things, but I don’t think I’d had such a long period without an appointment or treatment related to my breast cancer since July last year.

I also saw the consultant breast surgeon this week for a three-month follow-up so I did in fact have two appointments this week. Nonetheless, I no longer feel I’m tied to the place.

People are warned that they may feel abandoned when their hospital-based treatment (chemotherapy, surgery and radiotherapy) finishes as they’ve got used to all the appointments and treatment and to having people caring for them. I haven’t any sense of abandonment – yet? – perhaps because for me there was no sudden end to things. Most people walk out of their final radiotherapy session and that’s it, but not me. I finished radiotherapy on the last Friday in February (“…3, 2, 1 and relax. Congratulations!”) but was back almost every day the following week (It’s not over ’til it’s over) as I’d had a bad skin reaction to treatment and was having the dressings changed on an almost daily basis. And there have been plenty of other appointments since then.

I’m still having physiotherapy on my operated side and there will be various other appointments over the next few weeks and months, but it’s good that things are tailing off. Feeling free again has its own challenges but, grateful as I am to everyone who’s been and who continues to be involved in my treatment and care, I can safely say I’m happy finally to feel no longer tethered to what has sometimes over the past seven months felt like a second home.

 

 

 

 

 

Post-op progress report No 4: Passing the Velux window test and “running” 5k

I’m delighted to report two massive achievements in terms of my physical recovery from my operation and more broadly from my breast cancer treatment in general.

Firstly, on a beautiful, sunny Spring morning a little over a week ago, I managed to open the Velux window in our bedroom in the loft for the first time since my surgery last December. Secondly, just this morning, I ran five kilometres round Tooting Common. This was the first time I’d been out running since finishing chemo last November (and even then I’d only really gone running two or three times since starting chemo in August).

If someone had told me a year ago that I’d get excited about something as trivial as opening a window, I’d have said they were having a laugh. But here we are. We didn’t know then that I’d be recovering now from six months of breast cancer treatment that involved chemotherapy, major surgery (a mastectomy, full lymph node clearance and immediate reconstruction using blood vessels and tissue from my abdomen) and radiotherapy. We also wouldn’t have known that I’d develop something called “cording” in my right arm following surgery that would mean I was simply unable to grasp anything tightly with my right hand or indeed to straighten my arm and exert any level of pressure. This time last year I hadn’t even heard of cording.

Anyway, the fact is that I’d tried and failed to open the Velux window on many occasions since my operation three-and-a-half months ago, on 19th December, so I was delighted when I finally managed it the week before last. It hurt but I’d done it. It meant the cording was loosening up. It still hurts to do it now, but it’s easier every time.

As for my jaunt round the common today, it was very slow but I think it just about qualifies as running*. I’d asked the plastic and reconstructive surgeon at my most recent appointment with her whether I could start running again. She’d said yes so I kind of felt I had to get out there and put my money where my mouth was before I meet her again, on 12th April, for my next six-weekly review. Also, the Saturday morning 5k running phenomenon that is Parkrun has come to Tooting Common and I’ve been gearing myself up to do that. The plastic surgeon had said to double up on the upholstery front if I did go running (It’s not over ’til it’s over) so, this morning, supported by the Sweaty Betty crop top that I bought for my sailing trip across the Atlantic at the end of 2014 (What a difference a year makes) and a sports bra, I set off.

When I look back on those first few days and weeks after the operation when I could hardly move (Post-op progress report No 1: Biting off more than I can chew), I find myself totally in awe of the capacity of the human body to repair itself. (Yes, I know the human body is equally “good” at destroying itself but we’ll set that aside for the moment.)

I knew I was getting stronger as I’d caught myself running up the stairs in the house a few times in recent days. That’s how I went up the stairs as a matter of course before I started treatment but at some point towards the end of chemo, I’d started walking instead. I’d also at some stage gone back to getting out of bed the right way without thinking about it but I’ve gone backwards somewhat on that front recently. The swelling and tenderness in and around the breast area (Breast cancer “reminders”) means that when I wake up now I have to work out which way to move that will cause least discomfort. Also, I have to confess that I’m already stiffening up after my run and am feeling a like an old lady sitting here on the sofa. All in all, though, I’d have to say things are looking up.

*To illustrate just how slowly I ran, I should tell  you that Andy, not the world’s fastest runner, accompanied me round the common and said he’d to make a real effort to keep down (is that the opposite of keep up?) with me!

It’s not over ’til it’s over

The hospital-based phase of my breast cancer treatment has finished but there’s still lots going on. My final radiotherapy session was a week ago now (Bike 8 – Car 7. Victory is mine) but by tomorrow afternoon I’ll have been back at the centre every day this week except today. Given that I started radiotherapy on 4th February, that means I’ll have been there every weekday – including two days as an in-patient – for precisely a month. No wonder I’m tired. And there’s more to come.

On Monday, I had my post-radiotherapy appointment with the consultant oncologist who organised the radiotherapy treatment. Also on Monday, I had to have new dressings put on those parts of the irradiated area that are worst affected by the radiation. On Tuesday, I had a six-week check-up with the plastic and reconstructive surgeon. On Wednesday, I was back at the radiotherapy department to be checked over and to have fresh dressings applied. I’ll be there again tomorrow for the same.

Let’s start with the “radiotherapy-induced skin reaction”. This is really common in people receiving radiotherapy (Sunburnt backs, patchwork dressings and crop tops (Radiotherapy part 2)) and can involve redness (yes), dryness (yes), itchiness (yes) and skin breakdown, ie cracking or weeping (not quite, although one or two areas are still at risk). The reason they’re keeping a close eye on things is that radiotherapy side effects can continue to develop after treatment ends and indeed can be at their most severe around 7-10 days after your final session. While the radiographers don’t think the skin will break down now (if it did, I’d be at increased risk of infection), they’re continuing to take precautions until the 10 days are up. Better safe than sorry, especially with my record on infections.

On to Monday’s meeting with the oncologist. She examined the irradiated area and said she was “hopeful” the infection that had me in hospital for two days on iv antibiotics was resolved (It went downhill from there). I finished my course of antibiotics later on Monday and there’s been no flare-up, so it’s good news on that front.

There’s still swelling/fluid build-up in the reconstruction and under my arm and the cording  (where the lymph vessels have hardened following the removal of the axillary lymph nodes) there has got worse. The cording now stretches from where the reconstruction meets my chest to past the crook of my arm. The oncologist suggested that a massage treatment called manual lymphatic drainage or MLD might help with the swelling. From what I can tell, this could require sessions three times a week or more for up to three weeks. So much for finishing treatment. Except now, of course, instead of treating the cancer, we’re treating the side effects of cancer treatment. Major difference. The physiotherapy I was having – and loving – for the cording is on hold until the skin reactions from the radiotherapy clear up. The MLD wouldn’t start until then either.

As for the plastic surgeon, there’s good news there in that she didn’t seem overly concerned at the appearance of the reconstruction and surrounds… despite the swelling, redness, inflamed scars and indentations. She did agree it was not the “lovely” – my word, not hers – thing that it was in the aftermath of the operation. However, she said reassuringly that while it might take six months (yes, six months!) for everything to settle down and will likely require a second round of surgery to tidy things up, “I don’t think you’ll have any problems” in the longer term. Phew. My claim to fame is that she took a couple of photos for her collection. She didn’t often get to see her reconstructions like this, she said, ie in their full, immediate post-radiation, scarlet glory! I’m really not used to having this part of my anatomy photographed but I was happy to oblige.

The abdominal scar has healed really well. I got some advice on how best to massage the area above the scar to loosen it off (it’s still quite tight) and on scar care in general. Also, not that I did that that much of it before, but I can start running again. I’ve to wear two bras, though, a regular sports bra and a crop top!

Next week is shaping up to be a lot quieter on the appointments front. Hopefully the radiographers will sign me off at the beginning of the week and then I’ll have nothing until the following week when I’ve got appointments with the two consultant oncologists involved in my care. The oncologist responsible for the radiotherapy – a clinical oncologist – will review how the skin reactions and swelling are looking and perhaps I’ll get an idea of when I can restart physio and perhaps start this new MLD treatment. The oncologist who’s been responsible for all my drug treatment to date – a medical oncologist – will arrange a date for me to come in to the chemo unit for my next cycle of the bone-hardening drug, zoledronic acid (Breast cancer does indeed “come with baggage”). I’m to have this initially every three months and then every six months during the five years I’m on letrozole hormone therapy. I had the first cycle with my final chemo session last November. It’s hard to believe that was only three months ago. It seems like an absolute age.

 

 

 

 

 

 

 

Appointments, appointments, appointments

Breast cancer-related appointments between now and mid-September:

Monday 24th August – appointment to look at wigs at the London branch of Trendco, “one of the UK’s largest alternative hair suppliers”. There’s no guarantee against hair loss with scalp cooling and, as they say, forewarned is forearmed.

Friday 28th August – blood test at hospital to check white blood cell levels.

Tuesday 1st September am – pre 2nd chemo cycle review with oncologist & pre 2nd chemo cycle blood tests.

Tuesday 1st September pm – Look Good, Feel Better workshop, a two-hour skincare and make-up session “to help women and teenagers combat the visible side-effects of cancer treatment at what can be a very difficult time in their lives.  We aim to help them literally look good and feel better”.  It seems my days of being the woman who has always worn as little make-up as she could get away with are finally over! I have to admit I am so grateful this charity exists as while I think I can cope with the head hair loss, I am struggling to imagine life eyebrowless and eyelashless.

Wednesday 2nd September – 2nd chemo session, assuming blood tests ok.

Wednesday 9th September – MRI scan to check progress after 2nd chemo session.

Monday 14th September am – pre 3rd chemo cycle review with oncologist to review MRI scan results.

Monday 14th September am – workshop on The Effectiveness of Mindfulness organised by the hospital. Can’t do any harm, I reckon.

Tuesday 15th September – workshop on Diet and Cancer organised by the hospital. Healthy eating is one thing but I just can’t bring myself to start juicing. It’s just not me, but I will listen very carefully regardless of what they say.

Wednesday 16th September – 3rd chemo session, on same regimen if MRI scan shows expected progress. Regimen change if not.

Husband and boys have gone camping in Sussex for the weekend and so I am writing this while enjoying a peaceful weekend at home. Posting now as I’m off to switch on the tv and watch Mo Farah hopefully win the 10,000m race at the World Championships in Beijing. Fingers crossed. Go, Mo! (Him and me both, I guess.)