Since last we spoke people have taking to asking me how I’m feeling in myself as if I’m some kind of old person who’s just had hip replacement surgery. I don’t know the answer to the question by the way BECAUSE WHAT DOES IT EVEN MEAN – except maybe that after twenty weeks of chemotherapy I look so shitty that people can no longer, in good conscience, tell me I’m looking well all things considered?
The Carbo/Taxol chemo continues to give me an absolute battering. It turns out I’m allergic to the taxol half of the cocktail, but not quite allergic enough to merit abandoning the treatment altogether. So we press ahead – a little more slowly than before. As things stand, I seem to be getting the green light to go ahead with chemo once every fortnight rather than once a week as originally planned. It’s endlessly frustrating, not least because it means that every time I think I’ve got the chemo finishing line in my sights they come along and move it back by ANOTHER week. That said, I’m told the delays are unavoidable if I want my liver to have long enough to pull itself together before it gets the buggery poisoned out of it again. Which, on reflection, I think I probably do….. and so I limp on, battle weary but determined to finish what I’ve started.
Some people sail through chemotherapy without so much as a second thought but for plenty more, it doesn’t quite work out like that. For a while, it looked like I might be one of the lucky ones, that I would just breeze through it with very little detriment to my life, but alas, it wasn’t to be. It isn’t so much that I hit a brick wall (as I was so often warned I would) but that the taxane based drugs came along and brought a tonne of bricks crashing down on top of me. For the first four cycles, chemotherapy was just something that happened alongside my normal life but now it is very much something that I find ways to endure. It seems like such an obvious thing to say, but I’ll be glad when this is all over.
Of course, it isn’t all bad because nothing ever is. There are always little chinks of light, tiny reasons to be cheerful, small pockets of hope. For one thing the sun is shining in Harborough once more. For another thing I’m off work now and so I stayed up way past my bedtime reading Pat Barker’s new novel ‘The silence of the girls‘ last night and after 100 or so pages I can categorically confirm that it is a THING OF ABSOLUTE BEAUTY. And for yet another thing, there’s Gryff because if he isn’t a reason to be cheerful, I’m sure I don’t know what is….
And for another, final thing, I’ve made it through twenty weeks worth of chemo already. Even if the worst case scenario comes to pass I’ve got less than that left in front of me. I guess what I’m saying is that if I could do what I’ve already done, then I can certainly do what’s left to get done – if you see what I mean.
Like I said – I limp on.
Meanwhile in other news I have now grown a convincing fuzz on my head and – this is the good bit – it very definitely isn’t looking grey so far. Huzzah! Still no sign of the eyebrows returning though, which is a source of constant consternation. I honestly didn’t realise how attached I was to them before they went and fell out….
Nothing else from me today save that I hope you are busy being out there in the world having all the fun it has to offer. I’ll leave you with a song, one of the prettiest songs I know, and bid you farewell – until next time of course…..
Hello there you lovely lot. How on earth have you all been?
There’s not an awful lot I can tell you about the past week here in WeeGee land. I mean, it’s been pretty boring. I got my head around the whole blood clot thing, dragged myself through the post-taxol side effects, and survived my first blood test since the demise of the PICC line. And that, as they say, is that.
Or at least that should have been that. Sadly, there’s a small matter of some sub-par blood results and the yet-again-postponed-chemo to throw into the mix but I’ve decided I’m just going to go ahead and be philosophical about that. I’ll get chemo when my body is good and ready to get chemo and in the meantime, there’s a bank holiday weekend without any post-taxol side effects to look forward to.
The good news is not having any chemo today has also given me a bit of extra time to write a post I’ve been meaning to write for a little while now. So, ladies and gentleman, I give you….. the one about triple negative breast cancer (TNBC). Huzzah!
Before I start though, I want to sound a huge note of caution: if you are diagnosed with TNBC please (please, please, and pretty please) don’t Google it unless and until you have discussed the diagnosis with your team. TNBC is often portrayed as the Bogeyman of breast cancer, particularly in the popular press where the available word count doesn’t necessarily lend itself to subtleties or nuance in cancer reporting. The best advice I can give someone with a recent TNBC diagnosis is to listen to your doctors and take some time to understand what they’ve said before you head off to explore the quagmire that is the Internet unaccompanied.
Before this whole thing kicked off I hadn’t even heard of the thing that was going to come along and change my life forever. In fact, prior to my diagnosis, I didn’t fully appreciate that there were different types of breast cancer at all. So, when I first heard the words ‘triple negative breast cancer’ they barely registered. I heard the breast cancer bit loud and clear, but the other bit? Yeah, that sailed right over my head.
Less than a week later I was waiting to meet with my consultant oncologist for the first time. My appointment was at 7pm and I was the only person in the waiting room. Thinking back, I suppose it should have struck me as unusual that I was sitting there waiting to see a NHS consultant at 7 o’clock in the evening, just a few days after my diagnosis but at that point in my breast cancer journey my brain was completely fried and everything felt unusual. It was only as the appointment unfolded that I started to get a sense of the urgency that surrounded my recent diagnosis.
What even is triple negative breast cancer?
I’m not even going to try and explain the science here – others like Macmillan and Cancer Research have already got that covered – but in layman’s terms, in order to grow some breast cancers respond to a protein called HER2, some respond to oestrogen, and some respond to progesterone. And then there’s triple negative breast cancer (TNBC), which responds to none of the above.
TNBC accounts for between 15 and 20 percent of breast cancers and, in contrast to other types of breast cancer, comparatively little is known about why some women develop it. It doesn’t share the common risk factors for breast cancer, and for most women with the disease there is no genetic component* TNBC is more likely to affect women under the age of 40 and black women are also disproportionately affected by the disease.
What’s the big deal?
TNBC is often described as the most aggressive form of breast cancer, because it tends to be fast growing. More often than not, TNBC will be diagnosed as ‘grade three’ meaning it is made up of the fastest growing cancer cells of all. Because it is fast growing, TNBC also has a habit of spreading to other areas of the body meaning that the number of women with TNBC who are diagnosed with, or go on to develop a metastatic form of the disease (that is stage four, incurable cancer) is higher than those with other types of breast cancer. The fact that it is both fast growing and quick to spread also mean that comparative with other types of breast cancer, it is more likely to recur within the first three years. This recurrence risk has a knock on effect on survival rates which are measured over five years in the first instance.
That’s the bad news, but it isn’t all doom and gloom. For one thing, TNBC responds well to conventional treatments, like chemotherapy and surgery. For another, although the odds of recurrence are comparatively high that’s only true in the three years immediately following diagnosis. After that, there is no elevated risk of developing breast cancer again at all. And then – and this is the most important thing for me – notwithstanding any of the above, the overall survival rate for women with TNBC is almost eight in ten. It may not be the 93 percent for protein and hormone positive cancers, but it’s still a fairly sizeable majority – a fact that is all too often missing from the literature on the subject.
TNBC and me
Whichever way you look at it, TNBC is a nasty little disease and, given its propensity for growing and spreading, one that requires super fast treatment. Which is why, after my diagnosis had been confirmed, I was sitting in an oncologists office within a week, and a chemotherapy suite within a fortnight. Without wishing to put too fine a point on it, you just don’t fuck about when it comes to TNBC.
My cancer is not, in triple negative terms, particularly aggressive – grade two which is exactly in the middle of the three point scale. Unfortunately, some lymph note involvement was confirmed at the time of my initial diagnosis, or to put it another way, breast cancer cells were detected in the lymph nodes in my armpit. This isn’t ideal as it’s via the lymphatic system that cancer comes to move around the body and metastasise, or grow in secondary areas of the body. At the same time, it isn’t the end of the world because there is no evidence whatsoever that the cancer actually has travelled beyond the lymphatic system.
Even in the event that there were microscopic cancer cells swimming around undetected last December, the chemotherapy will have knocked the stuffing right out of them before they had the chance to take root and start growing anywhere else. And this means that by the time I’ve had my surgery and radiotherapy later in the year, the anticipation, expectation and hope is that there will be no evidence of cancer left anywhere in my body because I will be *whispers it* cured. That’s the plan and I am very definitely sticking to it…..
Before I go, I wanted to come back to the point about TNBC being the Bogeyman of the breast cancer world. It may well have earned its reputation because, as I’ve said, it’s aggressive, quick to spread and eager to recur. But here’s the thing, the most important thing of all perhaps: the majority of women with TNBC will recover and go on to live the rest of their lives untroubled by the disease. I’ve been thinking about it a lot lately and I just don’t think we make enough of that fact. When we talk about TNBC we get all serious and gloomy and ashen faced. But – and I cannot stress this enough so I’m going to risk repeating myself, the majority of women with triple negative breast cancer recover and live the rest of their lives untroubled by the disease.
Pass it on.
Quick song before I dash, to get your bank holiday started like:
Love you all lots, like jelly tots
*As an aside, a small number of women with TNBC carry the BRCA1 (another thing I’m not going to attempt the science on – see here). At the time of my diagnosis I wasn’t recommended for genetic testing, primarily because I don’t have any sisters. Now I’m a bit more comfortable advocating for myself I’ve decided to push for it to happen so it can inform my decisions about surgery and radiotherapy in a few months time. But that’s another story.