Since starting my new treatment, I’ve been asked lots of questions by fellow patients and concerned friends/family about what it really involves. So I thought it would be helpful to explain a bit about my experience so far, after my first two weeks of chemoradiotherapy. Apologies if it is boring; I prefer ‘thorough’ or ‘comprehensive’.
Before anything can start, you need to attend a planning session to get set up. Just like chemotherapy, there are lots of different types of radiotherapy and so the team need to make sure you are getting exactly what you need for your cancer type and location.
In my case, because mine is located in the pelvic region, there are lots of other pesky important organs which need to be avoided as much as possible – most particularly the bladder and bowel. In order to protect them and move them out of the way slightly, it is vital to go into each treatment with a full bladder.
However, because the measurements the radiographers need to take have to be so specific to line you up perfectly for every session, your bladder needs to be exactly the same amount full each time. So part of the planning session involves starting a routine you will continue whereby you empty your bladder an hour before a treatment, then drink a set amount of water and hold it until after the treatment is complete.
For the planning, you are then put onto a CT scanner and lined up to laser beams. Once happy with your position, the radiographers mark small tattoos onto you to ensure consistency in each session. It’s very quick and no more than a tiny scratch, leaving you with some extra, black freckles (four in my case). Don’t ask them to do any other sort of design, like a flower or a skull – they obviously get asked it by EVERYONE (I totally thought I was a hoot, naturally).
The technical bit
The type of radiotherapy I am having is called Intensity-modulated radiotherapy (IMRT). It uses little teeth inside the scanner arm, something like typewriter keys, which are arranged into different shapes to direct the rays to target the precise shape of the tumour, protecting the surrounding area as much as possible so there’s minimised long-term damage to other organs.
Carlyle’s the name, IMRT’s the game… meet my friendly radiotherapy machine. As you can see, it bears a resemblance to an MRI or CT scanner, but is less like a doughnut and more like an octopus. You lie on a flat bed and let the radiographers wiggle you into the perfect position. Once in place, they leave the room and the ‘arms’ of the machine rotate around you. They get into place, move the teeth mentioned above, and then deliver a short blast of radiation. This sounds like an insect buzzing, and doesn’t feel like much really. I have about 8 blasts and then it’s over. Once a week, I am seen on a different machine which has a scanning arm too, so the doctors can check that everything is still in the correct position.
Every day I dutifully follow my timetabled and measured water evacuation and intake. However, as my bladder hasn’t been normal since the surgery in February, it is still hard for me to know how much I actually need to go. Most days I am, apparently, ‘over-full’ (which is better than being too empty, just annoying for their measurements and lining up). I am asked a lot if I am “okay to hold on for another 10 minutes”, which is usually met by me with some bemusement, as I don’t even feel like I need to go. Still, I’ve got another few weeks to perfect the art!
I’m not going to go into the long-term side effects here, largely because I’m trying not to concern myself too much about them for now. In the short term, the main side effect so far seems to be fatigue. I really struggle to be awake! My first session made me feel very sick, which could be because the treatment goes near to my stomach. I am now taking Domperidone, an anti-sickness drug, three times a day and that has definitely helped with the nausea. I’ve been promised that radiotherapy also causes diarrhoea, news that I greeted with some excitement, but I am still firmly blocked for now (cheers, opiates). It seems that the side effects are cumulative, so the first week or so aren’t too bad, and then they continue for a couple of weeks after you’ve finished. Yay!
Cisplatin puts the ‘chemo’ into chemoradiotherapy. Apparently, the weekly dose makes the cancer more sensitive to the effects of the radiotherapy. It is far less aggressive than the Carbo/Taxol I was on before, and appears to have few side effects (touch wood!). The main one I’ve noticed is a flushed face for a couple of days afterwards, though with all the treatments and drugs, it’s hard to know what’s causing what.
This chemo cycle is weekly, so every Thursday I go in for a long day. The administration of the actual chemo drug itself only takes one hour, but because it is ‘kidney toxic’, it has to be given with copious amounts of fluids. That means that it takes around 6 hours (and I come out significantly heavier than I went in!).
Once the chemo drug itself has been administered and I’m back onto the fluids, I am allowed to wheel my drip down to radiotherapy to have my daily dose. This feels like very keen multi-tasking.
During this regime, I see my Consultant Oncologist once a week, to confirm my blood counts are good to go ahead with the next chemotherapy and also check up on how I’m getting on with any radiotherapy side effects. I also see my Clinical Nurse Specialist every week during my chemotherapy session. In addition, I have been having regular checks from members of the Pain Team as we have struggled to get the pain under control – although that seems to be more manageable now.
For the radiotherapy sessions themselves, there is a large team of radiographers so I won’t always seem the same people. However, everyone is so friendly and what with going in every day I have got to know them pretty quickly.
Last but by no means least, my thanks goes to the heroic team of nurses who work in the Medical Day Unit (aka the chemo room). After the Carbo/Taxol cycles as well as these first two Cisplatin ones, we now know the majority of the nurses on the unit. It makes an enormous difference and I really can’t thank them enough for their care, attention and vein wizardry (and also turning a blind eye to my horrible taste in TV programmes…).
Any other questions?
I think that’s everything… if I’ve missed anything though, or there are other questions people would like me to attempt to answer, please do comment below.
There’s a really useful and informative video showing all of the above and more on the Royal Marsden website.