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.
Thanks for sharing. I think people forget that sometimes you need to decide what’s best for you and if it’s an option between the trial and your sanity then I think you made the best choice for you!
Thanks Nicki. I think my nearest and dearest might have preferred me to continue to be monitored closely, but it really was starting to do my head in. There is always a tipping point when you sign up to anything, where the disadvantages start to outweigh the advantages, and I do just want to get on with my life and see as little of the oncology department as possible for the rest of my life! xx
You may not feel the need to jump on the fundraising bandwagon but you are doing a lot for cancer research by taking part in the trial to help future patients, as well as helping current patients by researching and translating the gobbledygook in this blog and telling it like it is, especially as sometimes people don’t like to question the professionals, so you may have helped readers to find the confidence to speak up. When my brother was diagnosed with testicular cancer 14 years ago at the age of 25, my mum took to sending all young men in her address book ‘grope yourself’ leaflets with their birthday cards which was a small gesture but made her feel so much better because my brother’s cancer was treatable as it was caught in the early stages because he had examined himself.
You seem to have reached so many milestones already and it will soon be over. Well done you!