A bit of a trial

One of the most fortunate aspects of being diagnosed with breast cancer in October last year was being one of the last people in the UK to be eligible to take part in a trial of a new chemotherapy drug.

This was the sister drug to Herceptin, which is used in hormone-dependent (or HER2 positive) breast cancer to stop HER2 protein receptors on the surface of the cancer cells picking up too many ‘Grow, you buggers!’ signals. The new drug, codename pertuzumab, works alongside Herceptin to separate these same rogue receptors to reduce the strength of the signal they are receiving. It’s being developed by Roche, and I was on phase III of the trial. The earlier phases had shown excellent results in older women with metastatised (secondary) breast cancer, and this phase was to see whether the outlook was as good for younger women with advanced primary breast cancer, like me.

And, as you may recall, the results have proved to be amazing. All three tumours in my breast and lymph disappeared within a couple of arduous sessions, with the two hormone treatments followed with the traditional chemotherapy drugs carboplatin and docetaxel. So far, so good. High five me, high five Roche. The trial also meant I had my wonderful, dedicated research nurse Celia to look after me, co-ordinate all my treatments and appointments and scans and tests. Because when you’re on a trial, you see a lot more of your consultant, and have a lot more scans and other checks, than you would otherwise.

At the start of that long journey into the unknown, this was hugely reassuring. I kept being told that people on drugs trials generally do a lot better in terms of response and recovery than those who aren’t, and this is probably at least partly down to being so well looked after, and being kept a very close eye on. It’s practically like going private on the NHS. I feel very lucky and hugely privileged to have benefited from a drug that won’t hit the market for years and will almost certainly be as controversial as Herceptin was in terms of its cost to the NHS, and might not even get approved by NICE.

The Herceptin lasts a year, so keeps going (albeit with no side effects) for another six months after you’ve finished what everyone thinks of as the real chemo. And it’s bloody expensive: I have to call the pharmacy the day before my three-weekly appointments to confirm I am fit and well enough to have it because each little drip bag costs £1,500 (yup, you read right) and once made up to order for each patient, only has a shelf life of 24 hours. Once my 17 Herceptin cycles are over on 1 December (second to last one this Thursday!), that drug alone will have cost the NHS £25,500. And that’s not including the new drug, the other two chemo drugs, all the scans and tests, the medication to offset the side effects of the chemo, the surgery, the radiotherapy, five years of tamoxifen, or my unscheduled week in hospital after my first chemo when my immune system went awol.

So why I am bringing up the trial now, as I approach the end of the invasive aspects of the cancer treatment? Well, as well as all the general fabulousness of being on a trial, there are also significant downsides. You all know I’ve never defined myself as a ‘cancer sufferer’ or a ‘cancer victim’ or a ‘cancer survivor’. Some people find cancer is a springboard to getting really involved with the disease, fundraising and raising awareness and generally ensuring that their experience leads to some good. But, like Jennifer Saunders as interviewed in this week’s Sunday Times Style magazine, that’s not really something I’ve ever had any interest in. I did the Pink Ribbon Walk to raise loads of dosh for the admirable work of Breast Cancer Care, but to be honest, I’m more into taking cancer on the chin as a really important life lesson, and then moving onwards and upwards. For me, my cancer journey is coming to an end, fizzling out, and then it will be over, behind me, and I can just forget about it, while continuing to work on my physical, emotional and spritual health to ensure it doesn’t happen again.

But being on a drugs trial means that it’s very difficult to maintain that stance. There’s just so much hospital contact. And over the summer, after I finished my radiotherapy, I had started thinking that I might opt out of the trial at the end of this year, just to get my life back a bit quicker. I didn’t really want to be seeing my consultant every three weeks during the Herceptin and then every 12 weeks for the whole of next year.

As it is, I’ve had to rearrange almost every appointment to fit around the children and work, neither of which has been taken into account by anyone on my medical team at any time. There’s only so much logistics and childcare I want to arrange for an appointment that is essentially a box-ticking exercise for a pharma company rather than being of any further benefit for my health. My suggestion for the research teams who identify and recruit candidates for drugs trials is that they really need to make it work around people’s lives so they can easily stick with the regime, rather than making it so stressful and time-consuming.

I’ve had roughly double the normal number of MUGA radioactive heart scans as you would normally have, for instance, to the extent that one of the nuclear medicine team said he had flagged up that I was having far too many for a woman of my age and exceptionally good heart health (Herceptin can damage heart function; no-one’s really sure what the two drugs together do). The last straw for me was on one morning in September when I was due to have yet another MUGA.

The nuclear department was running late, as per; so late that I had to flag up that I needed to collect DS from nursery in an hour. The scan requires two injections, 40 minutes apart, and then the scan itself is about half an hour, plus sundry haning around, so they need to do the first injection about 1.5 hours before it’s finished. They shrugged it off, said they couldn’t speed anything up, and so I left. Well, stormed out ranting, tbh. I was furious. I’d taken the morning off work to have an unnecessary, invasive, radioactive procedure and no-one had any interest in making sure it happened even vaguely on time. I stomped up to Celia’s office and ‘downloaded’, and told her I was opting out of the trial and would certainly not be having any more MUGAs. She was really lovely, and quite upset on my behalf, and sorted everything out so the rest of my treatment would proceed as it would if I was not on a trial. They still need to keep an eye on my heart, but I can even have a quick, non-invasive echocardiogram instead.

I felt instant relief, even more so when at my next consultant appointment, I was told I didn’t have to see Dr Houston for another three months. And even more ‘caancer has been well and truly f*cked’ news was to come in mid October, when I had my one year mammogram, with some trepidation (I’ll have one a year for the next five years). It was extraordinary, tear-promptingly painful, especially as the scars on my right breast were squished, and I was told at the time I’d have to wait three weeks for the results, but the all clear came in the post two days later. Huge sigh of relief all round. Another milestone passed.

If you are ever in the double-edged sword of a position where you are given the chance to take part in a drugs trial, I would still wholeheartedly recommend it, especially if it’s phase II or III. This isn’t guinea pig stuff: it can really improve your outcomes. But don’t be afraid to do it on your terms. Don’t think you have to accept every appointment you are given, or every scan. Establish a good relationship with your research nurse and use them to arrange everything and make your life easier. When it stops feeling like it’s about you and your health, you are at liberty to opt out. Taking part in testing a new bit of science is usually a good thing, not only for the patients involved but people with the same condition in the future. But always remember: it’s your body, and your treatment, and it’s important that you always feel in control of that, especially when you’ve been blindsided by something as potentially power-leaching as a cancer diagnosis.


No cheese, please, Louise

I’ve been meaning to write this post for months. I was finally goaded into action by a bit of half-arsed ‘investigation’ into using food as medicine on Channel 4’s ‘The Food Hospital’ last night. After lots of basic, sensible stuff on how changing your diet can dramatically improve your health if you have diabetes, polycystic ovaries, high cholesterol or migraines, there was a five minute segment on a young woman who had breast cancer.

It had already spread to her spine. That’s not good news: with secondary cancer you can never officially be ‘cured’. So she had done her research and come across a hypothesis that replacing dairy with soya would have a huge impact on preventing hormone-dependent breast cancer (which accounts for around 50% of breast cancers: this is what I’ve had, and it’s more aggressive but there are more tools in the bag to tackle it at the moment.) I am very familiar with this theory, because the book it’s espoused in, Your Life In Your Hands, is practically my bible.

It was written by an earth scientist called Jane Plant, whose breast cancer kept coming back, tumours popping up all over the place. The fourth time, she was given months to live, and says she felt like giving up. But she didn’t. Instead, she used her scientific background to examine research papers from all over the world. She discovered that while in the UK, one in  ten (I think this is now one in eight) women will contract breast cancer, in China it’s more like one in 10,000. As she looked into this startling discrepancy, Jane Plant became convinced she had discovered the first causal link between diet and breast cancer.

Her story, and the book’s premise that the hormones in dairy produce can cause hormone-related cancers such as breast, ovarian and prostate – is compelling. After her last bout of cancer, she was given only months to live. Nearly 20 years later, she’s still alive and kicking, and the cancer is still in remission. Jane Plant suggests that the only living beings that need and can properly digest and process cow, goat or sheep milk are baby cows, goats and sheep. She intriguingly repositions dairy from ‘healthy and natural’ to ‘poisonous junk food’. There’s a bit of conspiracy theory involving two baddies – Big Pharma and the Global Dairy Industry – but I don’t have a massive problem with that.

The book so resonated with me when I read it just before my surgery in April (having being urged to read it by two different people on the same day – I’m a big one for following little signs from the universe like that), that I immediately cleared the fridge out of all dairy products.

This was A Big Deal because I’ve had a major love affair with cheese my whole life. In restaurants, I always went for the cheeseboard over a pudding. Cheddar, parmesan, brie and Boursin were staple foods in our house. Fondue? Nom nom nom. Not to mention milk, proper butter, premium yoghurts, custard, and ice-cream. I tried to buy organic – the non-organic dairy industry is as horrific as battery-farmed chickens – but otherwise had never thought twice about dairy other than the potential impact on my hips. Dairy’s good for you, right? And a great way of getting protein into children, yes? Well, perhaps not.

Cutting out dairy was easier than you might think. For me, the book opened my eyes to seeing my diet in a whole new way. It was a no-brainer: if there is even the slightest chance that Jane Plant is right, then why wouldn’t I switch from dairy to soy? We now have Alpro soya milk, yoghurt, and desserts instead of dairy, and dairy-free spread. I don’t exactly love tofu but I do use it. I drink miso soup. I snack on those lovely dried soya nuts and use soya beans (also known as edamame thanks to Wagamama). I love cooking and haven’t found avoiding dairy is even slightly tricky.

After a few months of being strict with everyone in the house, I am now confident enough that I can resist dairy to let the kids have the odd bit of grated cheese or Babybel, and DH to have butter and proper milk in his weekend coffee (soya milk is great in tea and on cereal but curdles revoltingly in homemade cwaffee. Not sure how the coffee shop chains manage it, but I do love my flat white with soya as a weekend treat). And I do have the occasional sliver of sheep’s cheese (Manchego, Pecorino, or Roquefort), since that seems less problematic, hormone-wise. But actually, much to my surprise, I just don’t really like the taste anymore. You know the thing that Chinese people say about Westerners, that we smell of rancid milk? That’s pretty much what all dairy smells and tastes like to me, now. All cow’s milk, no matter how fresh, just smells ‘off’. I don’t think the odd bit of dairy is going to hurt, but broadly speaking, it no longer has a role in my diet.

The kids are completely cool with the new regime. DS, in particular, has benefitted: I always suspected he was dairy intolerant because he was such a collicky baby, especially on my dairy-fuelled breast milk, and his nappies were ‘leave-the-room-retching’ vile. Since the switch, his tummy is absolutely fine, and nursery have been good enough to keep him off dairy as much as possible too.

So why did that Channel 4 show get my back up? The ‘nutritional experts’ briskly waved aside the young woman’s decision to swap dairy for soya as ‘controversial’ and said it was ‘up to her, but they haven’t found any evidence to support it’. Whoever ‘they’ are. The programme also then made some sweeping generalisations about avoiding all cancers, not just hormone-dependent breast cancer, including not drinking to excess, not smoking, and eating plenty of fresh fruit and veg.

Firstly, no causal link (ie x causes y) has ever been discovered apart from smoking and lung cancer. There is no definite link between smoking and any sort of breast cancer, although of course cigarettes do contain about a million carcinogens so it’s not a great idea. The evidence on alcohol is conflicting, and personally I think the benefits of relaxing with a glass of red after a stressful day outweigh any unproven risks, especially if we recognise the extent to which stress affects our immune system, which fights off the cancer cells we all have in our bodies. Plus wine is my only vice, so the nay-sayers can f*ck off.

Thirdly, cancer apparently loves sugar, and most fruit is very high in sugar. Fruit juice is practically all natural sugar with very little nutritional benefit. Yes, we get vitamins and fibre from fruit, but personally I aim for five portions of fresh, colourful veg and legumes or pulses a day, and avoid fruit (and, obviously, other sugary) apart from the occasional treat. I’m not alone – I’ve heard a few rumblings lately about the ‘five a day’ thing being flawed, because we really don’t need five portions of fruit a day, which is the easiest way of following this rule, especially for kids.

So there we are. I’ve fessed up. I don’t watch Martine McCutcheon in those Activia ads and think, ooh, I have to have a yoggy. I can’t say I don’t sometimes hanker over a very ripe, stinky brie ooching across a cheeseboard. But if you were in my position, I bet you’d give dairy a second thought.