I turned down radiotherapy

but then I changed my mind.

Will I, won’t I? Oh, go on then.

I nearly didn’t write this post because, in the end, radiotherapy was pretty straight forward. But then I cast my mind back to a year ago when radiotherapy was this terrifying, ghoulish, old fashioned thing that would ‘bake’ me (someone else’s term). I was really scared of radiotherapy. I was scared because I had spent my whole life hearing about it in hushed tones, about how it was painful, about how it offered false hope because, ultimately, it hadn’t worked. I thought there must be a lot of people with these similar thoughts and ghosts of thoughts.

So this is what radiotherapy is like in 2017:

Towards the end of my (8 months of fairly brutal) chemotherapy, my oncologist started to mention radiotherapy. I had been under the impression that I wasn’t going to need it as it hadn’t really been mentioned. This, as it turns out, is more of a tactic than a treatment plan. The oncologists won’t lie to you, but they don’t offer extra information if they think you’re ‘full up’. Looking back, that’s probably a good idea, but it came as a shock to learn that after chemo, recovery, major surgery, and more recovery, I’d be gearing up for radiotherapy. If I wanted it.

And there’s the rub. While all treatment is technically optional, radiotherapy is the most optional. You see, I’ve had my breasts removed and reconstructed with implants so it’s difficult (but not impossible) for me to get breast cancer again. There are tiny bits of tissue and cells that remain. If you’ve ever tried to eat a spare rib you’ll know how difficult it is to get every last bit of meat. Even after my mastectomy, there’s a 5–10% (maybe a bit more, maybe a bit less) of me getting breast cancer again, probably in my chest wall or the skin that used to hold my boobs. Radiotherapy can reduce that risk by one to two thirds (maybe a bit more, maybe a bit less). You’ll notice how none of this promises to completely stop me getting breast cancer again.

Oh, and did I mention that the radiotherapy could utterly sod up my breast reconstruction? As my body freaks out from the radiotherapy, I could reject the implant, causing my chest muscle to tighten up around the silicone and my boob will harden up and poke out like when you squeeze a stress ball smiley and the eyes pop out. This is unlikely but not unheard of.

My skin will almost definitely react to the radiotherapy. Like a harsh sun tan. This could kill off my skin, exposing the underlying muscle, already strained from the operation. This could cause the whole reconstruction to Fail- a nice word to say that they’ll have to take the implant back out. Reopening my scars, remove and flattening the skin, wait for it all to heal and then try again using skin (and maybe muscle) from my back.

Oh, and this is only for the side that I had cancer in (reminder: I only had cancer in one breast but I had both removed because I have up to a 60% chance of it coming back in the other side, and I’m not up for that. Not one bit). So all these things will only happen on one side of my body, making it more and more likely that I’ll end up completely lopsided.

When I’m deciding about radiotherapy, I’m out of surgery, I’m recovering well and all my efforts have been towards getting my skin and muscles to heal from the recent battering of surgical reconstruction. Do I really want to risk it all when I might but be taking a 5% risk down to 3%? When I’m just starting to be able to pick up my daughter again. When I’m finally feeling well. Radiotherapy is every day for just a couple of minutes, but you still have to get to the hospital and get back, not forgetting the hanging about in between. And I still have an 18 month old daughter who I’d prefer to spend my days with. Not to mention getting back to paid work.

So when you think that people with cancer are bound to take any and all treatment they’re offered, it’s not quite that simple.

Anyway, I decided not to have the radiotherapy, and then changed my mind a few times and eventually decided to have it. I chatted to my surgeons (one of whom said that radiotherapy could burn a whole in my skin — remember, surgeons would prefer their handiwork to be left alone if there’s minimal risk) my radiotherapist (They’re not really called that but it distinguishes them from the other oncologists) and my husband (who loyally promised to support whatever I wanted) and my daughter (that was a pretty one-way conversation to be honest. She’s one.) and I decided to have it.

After all the palaver and back and forth decisions, radiotherapy itself was very, very straightforward and totally pain free. As always, you sign a lengthy consent form about a week before you get going. It takes a few weeks to get scheduled in and, beforehand, you go in for some scans and tattoos. Indeed, tattoos.

You have a CT scan where you’re asked to find a comfortable position (while topless) with your arms over your head in the arm version of stirrups. You lie on a stiff table and machine panels move around you. Its not closed in or claustrophobic. They take exact measurements of where you’re lying, how far down the bed you are, and that’s when they tattoo you. It’s not like you get a Cheryl Cole bum of roses, its just three dots, but I was less than impressed when I found out, I’ll be honest. I don’t have any tattoos and, in the unlikely event that I have one, I’d like it to be the quickly regretted design of my choice, thank you very much. In the end though, I got three blue freckles (like Phoebe in Friends). One between my boobs and one either side of my boobs, one is fairly obvious, one less so, and one is so small that I can barely find it. There’s no buzzing tattoo needle. They drop a little bit of ink into a normal syringe and just inject a tiny bit under the skin. It doesn’t hurt and the guy who did mine was very understanding and made them as small as he possibly could. The ‘dots’ act as little signposts for the radiotherapy team to line up with lasers on the machine.

Anyway, the tattoo fun ends and you leave holding a folded up piece of blue fabric that you’re supposed to take to every radiotherapy session and a list of times for the next 3 weeks. Each day you have to arrive for your pre-scheduled time and by having the list all mapped out, it makes it much easier to arrange your life.

When you finally return for your radiotherapy about a week later, you go in to a changing room with a door at either end. One door leads to the waiting room and one to the machines and team who will look after you. This set up is a nice way to minimise the number of people who see you in a hospital gown. Don’t forget that you can have radiotherapy to some pretty intimate locations so its a nerve wracking time for most people there. Also remember that people could come in from either side and one of the doors leads to a packed waiting room. Lock the doors. Both of them.

Later on, you walk through to a big room that contains what seems like an excessive number of people and the machine that’s going to deliver your treatment. It’s similar to the machine you lay on for your positioning tattoos. You pop your blue sheet down, confirm some details, wiggle into the arm stirrups and lie down in what you think is the same way as the before. The team then spend the next few minutes moving your body around in tiny movements, shouting out how many millimetres they are out (they are very precise). When they are happy that your tattoos line up with where the lasers say they should, they leave the room for 2 or 3 minutes. While you’re there you need to keep really still (no foot tapping to the music they play, no singing along, nothing), then they come back in and you leave. Hopefully you don’t walk in on someone who has forgotten to lock both doors in the changing-room-corridor-thingy.

Sometimes the team might leave the room for up to ten minutes if they are taking extra pictures but, in general, its quick and its always (like I said) completely painless.

About two weeks into my treatment I started to get a square ‘tan’ which continued to deepens for two weeks after the treatment and then started to fade like bad fake tan. As I understand it, the pigmentation is from your skin trying to heal from the treatment, not the treatment itself which is why it deepens even after the course has finished.

Every morning and night I religiously (but gently) moisturised my skin, stopped going swimming and kept up all my stretches and yoga not to stiffen up in my slow healing muscles. My chest skin and under my arms are numb from all the nerves that got scooped out during my surgery so although I can’t feel that my skin is irritated on one side, I could also easily scratch or catch it, and I wouldn’t know, so I have to be extra careful while it’s damaged from the radiotherapy.

Changing room corridor in panorama…There’s an orange ‘theme’ to this floor.
You can just about see the ‘tan line’ starting to appear, and the marker pen they used to see where my positioning tattoos are. On my way back home after the last day of radiotherapy, the bridge opened to let tall boats pass under. I stopped to have some cake and a cuppa. It was nice.

15 treatments go by over 3 weeks, one day they struggled to position me, one day they ran late, and one day I was late because a plumber cut through my hot water pipes (long story), but in general, it went really smoothly, it was very easy and I had nothing to fear.

I know fear doesn’t work like that. I have nothing to fear from spiders and they still creep me out but really, radiotherapy was fine. If you’re scared take someone with you. If you’re tired, take the opportunity for a cheeky snooze. If, like me, you just want to get this over with, just do it. It will all be over soon.

If you like this, pop a click over the little heart at the bottom, would you? I need the validation only internet stats can give. Ta.

Ex-scientist, stalled writer, current mammy. Went on #maternityleave, ended up with #breastcancer. Not mutually exclusive, it turns out. Views my own.