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. That 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. And 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.

There’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.

Recurrence 5: How would you know it’d come back?

Your active breast cancer treatment finished months ago. You’ve had follow-up reviews with the doctors who’ve been treating you and they’ve all signed you off. Your first mammogram since you were diagnosed – just over a year ago now – is booked for December. You’re told to get in touch in the meantime “if you’re worried about anything”, which basically means if you think your breast cancer’s come back.

I don’t feel abandoned like some people do. In fact I’d like to be out of the system even more than I am. I still have stuff going on that keeps me involved one way or another: six-monthly cycles of a bone-hardening drug to reduce the risk of recurrence and lower my risk of developing osteoporosis; occasional physiotherapy for the post-surgery underarm cording that’s still there; occcasional treatment for the lymphoedema I have in my reconstructed breast; and a consultation in either three or six months’ time with the plastic surgeon to check the reconstruction.

So how would you know your breast cancer had come back? Well, just as most primary breast cancers are found by women themselves rather than through routine screening (So you think you’re “breast aware”), most breast cancer recurrences are found by patients between hospital or clinic visits. You make sure you’re aware of the symptoms. If you have them, you get them checked out and you find your cancer has either spread (to your bones or your liver or your brain or your lungs or your lymph nodes or a combination thereof) or it hasn’t. If it hasn’t, I imagine you breath a huge sigh of relief and thank your lucky stars. If it has, it must be one of the worst pieces of news you could possibly get. Your best hope then will be that it hasn’t spread too widely and that treatment is available that will keep it under control for as long as possible. As you’ll know if you’ve read my previous posts on recurrence, recurrent/Stage IV/advanced/secondary/metastatic breast cancer can be treated and you might live with it for years, but it can’t be cured. It’s currently ultimately fatal.

Frustratingly, some of the general symptoms linked to recurrence – being more tired than usual, low energy levels, feeling under the weather, poor appetite, weight loss, back pain, headaches, etc – are also caused by common illnesses or ailments. They can also be similar to ongoing side effects of treatment you’ve had for primary breast cancer, such as chemotherapy or radiotherapy, and to side effects of ongoing treatment, including hormone therapy.

Essentially you’re encouraged to report any symptoms that are new, don’t have an obvious cause or don’t go away. Some women who’re not long out of active treatment panic at every ache or pain and head off to their GP or the breast cancer unit where they were originally treated at the slightest twinge. At the other end of scale, some women initially downplay or dismiss their symptoms only to find the symptoms persist and their cancer has indeed spread. Both approaches are understandable. Let’s see which camp I’ll fall into. I can tell you I’ve already had a lump under one of my scars checked out; it’s scar tissue, “nothing nasty”.

Better to err on the side of caution, I say, and to persist if you really feel something is wrong. A new report on diagnosis of secondary breast cancer from the charity Breast Cancer Care exposes what it says are “shocking failings” in the system– patients being diagnosed in A&E, facing avoidable delays and having concerns ignored by healthcare professionals. The report also says over half (58%) of people with incurable breast cancer did not know how to spot the signs and symptoms of the disease. The infographic here* is aimed at helping people who’ve been successfully treated for primary breast cancer recognize the symptoms.

People are surprised to hear that generally the only routine follow-up test you have after treatment for primary breast cancer is an annual mammogram (or ultrasound too in my case – What does follow-up look like?). Mammograms don’t check for secondary breast cancer. They check, rather, to see whether you’ve developed a new cancer in the other breast or, depending on what surgery you’ve had on the breast that had the tumour in the first place, to see whether it’s come back there.

It’s quite hard to accept that there’s no way of knowing your cancer has spread before symptoms appear. There isn’t a test that can tell whether you have dormant cancer cells resting somewhere in your body, or that those dormant cells are about to activate and start spreading, or indeed have just begun to spread. No amount of tests will stop the cancer spreading and, as Cancer Research UK says, since no test can pick up microscopic cancer spread, a negative test doesn’t necessarily mean that there is no spread.

As I’ve said before (Recurrence 3), you do what you can to reduce the risk of your cancer recurring. You try to live healthily, you keep a watchful eye on your body, you comply with any ongoing therapy, and you go for your annual mammogram and ultrasounds and any other check-ups you’re offered. Ultimately, though, you have to learn to live with the fact that you’ll never know you’re going to remain cancer-free and that those symptoms, if they appear, could be very bad news indeed. At this stage, a year after my diagnosis and just five months out of active treatment, that still seems really unfair.

*This post is dedicated to Jo Taylor, a friend I met through the wonderful social media resource that is Twitter and who created this infographic to help raise awareness of secondary breast cancer. Jo is in her mid-4os, has secondary breast cancer and is a tireless campaigner on issues relating to the disease.  Jo (www.abcdiagnosis.co.uk and @abcdiagnosis on Twitter) has just undergone major surgery and deserves a massive shout-out. Recover and be well, Jo. 

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.

 

 

So you think you’re “breast aware”

Everyone wants to know what led up to my diagnosis of breast cancer, especially the women. They usually ask one of two questions: “Did you find a lump?” or “Did they spot it on a mammogram?”. In my case, the answer to both is no. The questions, however, imply that we’re not as savvy around our breasts and breast cancer as we perhaps think we are.

With me, there was no lump. There was, rather, a hardening in an area of the right breast. Or rather, sometimes it felt hard and  sometimes it didn’t. I do appreciate the literature on being “breast aware” couldn’t be clearer on that point. The NHS leaflet, for example, says: Any lumps, thickening or bumpy areas in one breast or armpit which seem to be different from the same part of the other breast and armpit [are] very important if new. However, it was really only when the right nipple became less prominent than usual that I realised I needed to do something about it.

I’d always prided myself on being breast aware. Indeed, I’d been proactive in arranging to have a mammogram under the NHS breast cancer screening programme after I turned 50 in 2013. Two friends had been diagnosed with breast cancer that same year so, instead of waiting to be called in for a routine mammogram, towards the end of the year I phoned and asked for an appointment. I had my first mammogram January 2014; it was clear. They kept me on the system and nine months later I was called up for what would have been my routine appointment. So I had another mammogram last October; that too was clear.

So what happened with that latest mammogram? Was the cancer there and they missed it? That happens more often than most of you would probably think. Or was there really nothing there at the time? I’ll find out at some point as they review as a matter of course all cases of “interval cancer”, ie cancers that are diagnosed between one scheduled mammogram and the next. Even if it’s the latter, though, it’s worth remembering that a mammogram is really just like a photo – a record of a moment in time – and that, according to a government report from 2011, only around a third of breast cancers are diagnosed through screening.

I was proactive in requesting a mammogram, but what about that thickening? How long had that been going on? I honestly don’t know but the tumour was already big (probably bigger than 5cm) and had spread to at least one axillary lymph node by the time I was diagnosed. Both those factors have huge implications in terms of treatment options and the likelihood of recurrence. In medical terms, my cancer at diagnosis was Stage IIIa. That’s still counted as early-stage and, as I’ve said in previous posts, it’s being treated with curative intent.  But we’re having to use every weapon in the armoury to get rid of it and to reduce the chances of it coming back down the line: chemotherapy, mastectomy, lymph node removal, radiotherapy and long-term hormone therapy.

How much difference would it have made if I’d gone to my GP earlier? By a week or two? By a month or two? We will, of course, never know. It’s impossible to tell with any precision how long a cancer has taken to get to its current stage, although they can tell the type, ie whether it’s slow-, medium- or fast- growing. Mine, as fate would have it, is Grade 3. That’s the highest grade, and it means it’s fast-growing.

So let’s be clear. The stage of the cancer at the time of diagnosis is extremely important in terms of planning treatment and predicting outlook. The earlier it’s detected, the easier it is likely to be to treat it, the better chance of a cure, and the better the long-term prognosis.

Ladies*, I don’t know whether you’re reading this thinking “well done for going when you did” or “what an idiot not to have gone sooner”. Now ask yourself at which point you think you’d have gone to your doctor if you’d been me. Was I breast aware or not? You decide.

Breast cancer is rare in women under 50. That said, whatever age you are, you need to make sure you know what’s normal for you, that you know what changes to look for, that you look for them, and that you report any changes without delay. Early detection can be key to survival. It’s as simple as that.

*Of course breast cancer can affect men too, but those cases account for around 400, ie under 1%, of the almost 55,000 cases diagnosed in the UK every year and most men who get breast cancer are over 60.