If cancer’s a gift, you can have it right back

Precisely one year ago today, I had my final radiotherapy session, thus ending the hospital-based part of my treatment for breast cancer. I couldn’t let the occasion pass without writing something. Here goes.

Each to their own, but I want to say for the record that it’s beyond me how anyone can view cancer as a gift.

Everything changes when you get a cancer diagnosis. “Whatever your prognosis, whatever your hopes, whatever your personality, the second that you know that you have cancer your life changes irrevocably,” says Peter Harvey, a now retired consultant clinical psychologist whose essay on life after cancer treatment is one of the best things I’ve read on the subject.

Yes, good things happened to me as a result of having had cancer. I met some great people, made new friends. A huge amount of love, affection and support came my way. I learned a lot. I wrote. And as you’ll know if you follow my blog, I’m enjoying the benefits of the positive lifestyle changes I made as a result of my diagnosis.

I accept that I’ve experienced to some extent what’s called post-traumatic growth, ie positive change experienced as a result of the struggle with a major life crisis or a traumatic event. But that’s not the point. I’d really far rather not have experienced the trauma in the first place.

You do come out the other end of your cancer treatment with a certain freedom you didn’t have before. Lots of things that I would have worried about before now just don’t bother me. On other levels, though, despite trying hard not to, I still sweat the small stuff. I still get annoyed at things I know are really not worth getting annoyed over. I’m very aware now that you do only live once but, trust me, I really haven’t had a big spiritual awakening like some people who’ve had cancer (I still can’t bring myself to use the term “survivor”) claim to have had.

A friend asked me a while ago if I thought cancer had changed me. In fact she may have said damaged rather than changed. I pondered the question and said I thought it had made me sadder. I’ve thought about it a lot since and I’d say that’s a fair assessment.

I’m aware the bottom line is that I’m alive. I’m hugely grateful to the doctors who treated me and to all the other people who had a part in my care. I’m hugely grateful to the family and friends who supported me during treatment and beyond. But that doesn’t mean I’m grateful I had a disease whose treatment is, frankly, brutal and leaves you at risk of serious side-effects for the rest of your life. I’m not grateful I now have to take anti-oestrogen tablets every day for ten years or more that increase your risk of developing osteoporosis and womb cancer. And finally, I’m not grateful I had a disease that can hide undetected in your body for years and come back at any point and ultimately destroy you.

One year on from finishing what’s called “active” treatment (“…3, 2, 1 and relax. Congratulations!”), I’m well into what Peter Harvey calls “the long, slow process of putting [your cancer] in the right box in your life – not forgetting about it, not denying its importance or power, not pretending it didn’t happen”, but incorporating it “into your own life pattern and experience in such a way as to not interfere and interrupt any more than it has to”.bad pressie

The impact cancer has on you as an individual is just one part of it, though. A cancer diagnosis doesn’t just affect you. It has a massive impact on those around you. Wouldn’t saying it was a gift be insulting to them?

Everyone has their own way of coping. If some people do that by viewing having had cancer as a gift, fine. As for me, I’m pretty sure I’ll never feel that way. I’m not sure I’ll ever want to feel that way. At most I’ll concede that if cancer is a gift, it’s one where you know the second you open it that you’ll be taking it back pdq to exchange it for something you actually like and are happy to take possession of.

 

 

 

 

 

Defying gravity – well, one of them is

I need to say at the outset that this seems such a crazy thing to be writing about. I never thought in a million years that I’d be considering having a breast lift. On just one side. You are allowed to laugh. Believe me, I have, lots. That in itself, I guess, is something to be thankful for.

OK, background first. After finishing four months of chemotherapy for breast cancer, I had a right-side mastectomy last December followed by an immediate “own-tissue” reconstruction known as a DIEP flap reconstruction. This is a major operation involving complex microsurgery in which skin and fat is taken from your abdominal area and used to build a natural-looking breast after mastectomy.

A key benefit of an own-tissue, or autologous, reconstruction over an implant is that it changes with the rest of your body as you gain or lose weight and as you get older.

At least that’s the idea, but here’s the rub. It seems that the radiotherapy I had after surgery to reduce the risk of my cancer coming back has robbed the reconstruction of at least some of the elasticity it otherwise would have had. Don’t get me wrong, I’m really happy with it and it looks great. Don’t just take my word for it. I had an ultrasound scan on it recently and the doctor performing the procedure remarked admiringly as she rolled the probe over it that it looked “just like a real breast”. I almost said “Thanks” but stopped myself. After all, the credit’s not mine. The doctor asked who’d done it and we agreed they’d done an amazing job.

It does indeed look “real”, but the radiotherapy damage means it may not change very much from here on in. I met with the consultant plastic surgeon earlier this month, three months after our previous appointment, and she said what I’d already pretty much worked out for myself, that the symmetry that we hoped would come with time (Looking forward to a “much more symmetrical overall shape”) was not now going to happen… at least not without surgical intervention.

Things have undoubtedly continued to improve since I last saw the surgeon. The skin tethering of around an inch long down the right-hand side of the reconstruction and the scar tissue where the underarm lymph nodes were removed are less pronounced. And there’s very little – if any – swelling left in the reconstruction. But I’m pretty lopsided. And let’s face it, that’s only going to get worse. I’m 53 and I breast-fed my two children. The reconstruction may be defying gravity but the real boob on the left is most certainly not!

I wrote back in April about the potential side effects of radiotherapy on reconstructed breasts (Side effects you really don’t want to think about) so I can’t say I didn’t know this could happen.

I’m quite conflicted about the whole thing. I know I said before that I could live with less than a perfect match. The practical side of me knows the main thing was getting rid of my breast cancer and that there’s more to life than having symmetrical boobs. There’s no denying, however, that it would be nice to be matching once again. Also, the inquisitive side of me would love to see what is in fact possible. As I said to the plastic surgeon, one part of me says why bother doing anything at all, but another part of me is tempted to give you free rein to do whatever you think would be appropriate. That would be a lift on the left and some fat grafting on the right, with fat taken from my hips, to try and even out the area on the reconstruction with the tethering and the scar tissue nearer my underarm.

The pull to be like you were before is quite strong. I know that sounds strange coming from me, given that I really did very seriously consider choosing the “flat” option. I have nothing but admiration for those women who actively make the choice to go flat and stay flat and who are, as it were, “flat and proud”. I totally get the explanation that American comedian Tig Notaro gave when she decided against reconstruction after her double mastectomy. Why on earth would you go through such intense procedures just to have fake boobs, she said. I know there’s a lot more to it than that – and I mean a lot – but I get what she means.

My own decision on whether to have revision surgery or not would be a bit easier if I didn’t have what’s known in the business as wait for it… “good in-bra symmetry”.

It would also be easier – and this is key – if they hadn’t made such a good job of the reconstruction in the first place. That is so clearly not a complaint but it helps explain my dilemma. For example, there are no visible scars on the reconstruction. The scars are in the “intrammary fold”, where the breast and chest meet, so you can’t normally see them. With a breast lift, or mastopexy to give it its proper name, you inevitably have visible scars. It depends on the type of lift you have, but if you want to know exactly where they can be, click here.

I know I heal well – if you saw how faint the horizontal hip-to-hip scar I have from the original reconstruction operation is now, almost 11 months on, you’d see what I mean. The scars following a breast lift would fade in time too, but they’re unlikely ever to disappear completely. So do I really want to disfigure my good boob in the first place? Especially when there are no scars visible on the reconstruction. Then again, I have scars in lots of other places and I’m quite fond of them. They all tell a story – from the two big circular burn scars on my lower left leg from a childhood run-in with a radiator to the one under my chin from just a few years ago when the dry cleaning I’d just picked up got caught in the front wheel of my bike and I flew off over the handlebars in spectacular fashion.

One of the big things revision surgery can be for is nipple reconstruction. Since I had a nipple-sparing mastectomy, that’s not relevant in my case. Also, sometimes the abdominal scar needs revising; mine doesn’t. Or lumps of dead fat tissue develop in the reconstruction that need removing; I have none of those either.

But there’s more in the against camp. With a breast lift, there’s a small risk of reduced or complete loss of sensation in the nipple/areola, often temporary, sometimes permanent. Given that there’s no sensation at all in any part of the whole reconstruction (On very intimate terms with three new people), I do wonder if that’s a risk too far. In addition there’s the recovery period to consider, and the inherent complications of surgery. You’ve also got to bear in mind that nature will again take its course once you’ve had the lift; that lifted breast ain’t gonna stay lifted forever.

Anyway, I don’t have to decide any time soon. Part of me says wait a while and go for a lift when the good breast really has gone south! Or perhaps I’ll end up not doing anything at all. In the meantime I think I’ll park this particular issue and just get on with living life. And on this particular Sunday morning, that means a league match down at the tennis club. Wish me luck!

 

Here’s to remaining forever “entirely unremarkable”

It turns out that being described by your oncologist as “entirely unremarkable” is a good thing.

To be fair, the oncologist didn’t use the term to describe me personally. She used it in the context of the physical examination she did of me one day last month, at the appointment I had with her just before I had my latest round of zoledronic acid. That’s the bone-toughening drug I get a dose of every six months to counteract the bone-weakening effects of letrozole, the hormone therapy drug I take daily to lower the amount of oestrogen in my body and so reduce the chance of my breast cancer coming back.

The oncologist had a feel in various places for lumps or swellings or anything else that might have given cause for concern. Later, in her report to the consultant breast surgeon, she described the examination as “entirely unremarkable” in that there were “no signs of recurrent disease”. Of course, an absence of lumps is only that. All it means is there’s no palpable sign of trouble at this time. There could be lots of other stuff going on that we’re just not aware of (How would you know it’d come back?). But it’s something, and on that front I’ll take whatever reassurance I can get.

As well as having bone-strengthening properties, zoledronic acid has been shown to reduce breast cancer recurrence in post-menopausal women such as myself. It’s given via intravenous infusion (that’s a drip to you and me) over a period of 15 minutes; you’re in and out of the chemo unit in no time but it felt really strange to be back there after six months away.

My next round of the drug is due in March next year. Here’s hoping I’m still entirely unremarkable then and indeed that I stay that way for evermore.

 

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

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

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

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

Clear mammograms

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

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

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

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

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

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

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

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

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

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

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

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

Sod the compression bra, it’s summer!

I decided I’d had enough of compression bras when I was getting dressed one morning about a month ago.

I’d been advised a good few months ago now to wear a compression bra as a matter of course to deal with the breast lymphoedema I’d developed as a result of my breast cancer treatment. I’d been very compliant… up until this particular morning. The sun was shining. It was a lovely day. I’d tried on at least half a dozen summer tops and still hadn’t found one that covered the monstrosity I was wearing. I looked in mounting frustration at the growing pile of discarded tops on the bed and thought sod it, it’s summer. I ripped the offending garment off, put on a normal bra and happily put on the top of my choice. It sounds pathetic but I can’t begin to tell you how good it felt.

So how does the lymphoedema manifest itself? I clearly have a mild case but things are a little swollen in and around the operated area on the right hand side. Andy insists you don’t notice it when I’m clothed. I think you can, but I’m probably paranoid. I pointed it out to Andy in a photo. He peered hard. “If someone was looking at you that closely,” he joked, “I’d have to hit him.”

I don’t know whether it’s down to the surgery (mastectomy, reconstruction and lymph node clearance) or the lymphoedema but there’s still general discomfort and tenderness in the whole area and occasional pain. I’ve stopped running for trains on the tube to avoid bumping into anyone as I dive into a carriage. I don’t run down stairs for fear of tripping or falling. I’m careful in crowds. I brace myself when people give me a hug and hold myself in such a way that when they do they avoid the affected area.

I’m keeping up with my daily lymphatic drainage routine. The compression bra (or heavy duty sports bra – they do the same thing) still gets worn with some regularity. I haven’t managed to get 20160529_092548to grips yet with the kinesiology tape, which is also used in the treatment of lymphoedema. Yes, that’s me with the tape on in the photo, when I was having daily manual lymphatic drainage at the clinic back in May (Post-op progress report No 5). Drawing by Andy.

When I met the consultant who assessed the extent of my condition in April, she asked me to go through my recent medical history with her. As I told her what treatment I’d had, I could see her mentally ticking lymphoedema risk factor boxes. shitAxillary lymph node removal, radiotherapy, post-surgery cording, seroma drainage, cellulitis. Tick, tick, tick, tick, tick. I can tell you’re really not surprised I’m here, I said. She smiled.

Anyway, I guess it’s just something I have to get used to living with. It’s manageable, if inconvenient and a bit of a pain. Importantly, it seems to be pretty much under control. Let’s hope it stays that way.

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.

 

 

Recurrence 4: Fasting, aspirin, statins… is there anything that doesn’t reduce the risk of breast cancer coming back?

Every week it seems we’re being told that scientists have found yet something else that reduces the risk of breast cancer coming back or spreading. Prolonged nightly fasting, low-dose aspirin, cholesterol-lowering drugs, taking anti-oestrogen tablets for a decade instead of five years… you name it, it’s all meant to help improve the odds that women who’ve been treated successfully for primary breast cancer will live the rest of their lives breast-cancer free.

There’s been a lot in the past few months alone*. First it was reported that prolonged nightly fasting – of more than 13 hours, for god’s sake! – might reduce the risk. Then we were told low-dose aspirin might do the same (this isn’t new as such but there was new research). More recently there was huge media excitement over the possibility that cholesterol-lowering drugs or statins might prevent breast cancer that is fueled by oestrogen – by far the most common type of breast cancer – from returning. Then just a few weeks ago, reports seemed to bolster the argument that women with this type of cancer should take oestrogen-blocking aromatase inhibitors for ten years instead of the currently recommended five.

Read behind the headlines, though, and you invariably find things are never as straightforward as they seem. The research will be very early, or it’ll be based on limited data, or it’ll potentially apply just to some, not all, women, or there will be side effects that potentially outweigh any added benefit. You soon realise developments are nowhere near as earth-shattering as the headlines imply.

It’s easy to see why people want to believe we’ve solved the problem of breast cancer coming back and/or spreading. Primary breast cancer doesn’t kill but secondary/advanced/late-stage/Stage IV/metastatic breast cancer does. Once you’ve got it, median survival is just two to three years (Recurrence 1 & Recurrence 2). More than 11,500 women (and tens of men) die of breast cancer in the UK alone each year.

There’s no shortage of risk-reduction advice out there. Some of it is clearly rubbish, but I kind of understand why people choose to believe it. The novelist Helen Dunmore puts it much better than I ever could in her book The Siege. She writes: “The facts of life have been torn up and scattered, so you might as well believe in theory and rumour as anything else.”

You really do feel when you get a cancer diagnosis that the divine order of things as it were has somehow been disturbed. We complacently believe we’re all going to live til we’re 90 and we’re shocked, stunned, outraged, etc, etc, etc when we realise we might not get there. Dunmore’s novel is about the two-and-a-half- year siege of Leningrad during the Second World War in which hundreds of thousands of people starved to death. At some point during the blockade, people took to believing it was safer to walk on southern side of the street. It had to do with the fact the Germans were bombarding from the south of the city and so the northern pavements were seen as more dangerous. It probably didn’t make any difference which side you walked on. Like people who are desperate for a “cure” for their cancer or want to do everything they can to stop it coming back after being treated successfully first time round (Recurrence 3), it was case of any port in a storm.

Cancer Research UK points out that the fact there are problems with conventional medicine doesn’t automatically prove that alternative “cures” work. I like the metaphor they use: “Just because cars sometimes crash doesn’t mean that flying carpets are a viable transport option.” Sometimes, though, for the best of reasons, we really want to believe they are.