You are going to get a tattoo
The goal of TARGETED radiation is to get as much of your cancer site as possible and as LITTLE of the rest of you. There is a lot of geometry involved looking for the best angles. They scan your body so they know where everything is, especially your heart and lungs. You REALLY don’t want to irradiate your heart. They measure everything down to the millimeter and they tattoo you so that you are in the EXACT SAME position with every treatment. After they get you into the perfect position, they tattoo you with six tiny dots so that you are precisely lined up every time. The tattoos are tiny, like little blue freckles. Since I did my “dress rehearsal” right after my last inflation, it was hard to get into position. My tattoos for the vertical line up aren’t in a straight line in relation to my body, so now every treatment, I’m a little crooked on the table. In that “dress rehearsal” appointment, get as comfortable as possible. Wiggle around a little bit and try to find a good position; you will be lying that way for a month or two.
It’s going to be uncomfortable
Part of the “down to the milimeter” precision that we love about radiation therapy means that your bed is hard. There is no room for a small pad or a pillow when you need to have your body in the same position every day. So you lay on a hard bench with a hard spot to rest your head and hard brackets to rest your arms (like you are starting the YMCA dance, but you are lazy about it). This is physically uncomfortable, and you have to hold still. The radiation therapists are super efficient, and usually you are in and out of that bed in less than 10 minutes. The radiation itself is maybe 1 or 2 minutes. The rest of that time is getting you perfectly aligned and the machine moving around you to get into different positions.
General discomfort has really marked my time in radiation. I try to keep this in appropriate perspective: “cancer has been inconvenient and uncomfortable for me.” Yeah, that sounds like the best possible thing for cancer to be.
Having a doctor appointment every day is exhausting
The point of radiation is that radiation damages cells. The hope is that all your healthy cells recover and all your cancer cells are too damaged and die. And it works! In general, radiation makes recurrence 70% LESS likely. That is huge. In the more primitive days of medicine, they did large doses, and that turned out poorly. Doctors discovered that you get the same cancer-fighting benefit by spreading out your radiation into tiny doses every day. That is good because no radiation poisoning, but getting to and from the hospital every day is time consuming. I am very lucky that I live a 15 minute walk from the hospital, and I STILL think it’s a huge pain in the ass.
You are going to have to hold your breath (DIBH)
Your rad onc (radiation oncologist, or radonk-a-donk as I call her… she… she doesn’t like that name) does everything she can to avoid your organs during radiation. For radiation of your torso, the worst thing to do is to radiate your internal organs. That is why they have all the scanning: to figure out where you internal organs are, your specific configuration. Usually, your heart is immediately behind your breastbone. When you breathe in, your lungs expand and your heart moves back towards your spine. This gets your heart out of the radiation field during your treatment, and is called Deep Inspiration Breath Holding (DIBH). This is a little bit of a misnomer because it’s not necessarily a deep breath; it’s a deep enough breath to get your heart out of the way, and because of the aforementioned precision, you are supposed to breathe that deeply, that amount, every time.
Practically, this means that you will lay on the slab, and the radiation therapist will say “breathe in.” You inhale into your chest (not your stomach) and hold. If you do it right, the techs will turn on the radiation for 5-30 seconds, then say, “breathe out.” If you do it wrong, they will tell you to breathe out and take a shallower (or deeper) breath next time. Some places have a visual indicator for the patient to show when you reach your “right” breath, but most places, you have the radiation therapists coach you.
This is easier when your body is the same every day. However, through radiation and because of the side effects, your body will NOT feel the same every day. Some days you are “tighter” or “looser.” So during my “dress rehearsal,” the right inhalation was literally the deepest breath I could take. Some days, it is still the deepest breath I can take, but most days it’s an ever-changing percentage of my new lung capacity. It can get tiresome to be re-coached on a regular basis, but this is for your heart. <3<3<3
The side effects can get weird
You hear about the normal stuff from your doctor: fatigue and skin changes. The fatigue is minor, especially compared to chemo; it is cumulative, so it gets worse towards the end of your treatment. I honestly think that most of my fatigue comes from just going to the doctor every day.
The skin changes are also usually minor: dryness, itchiness, and redness. I use aquaphor during the day (doctor’s recommendation) and coconut oil at night. In some ways, I think of this as my “prayer cream” because the peer-reviewed, scientifically-backed jury is still out on the overall effectiveness of topical creams for radiation treatments. Your skin WILL get dry, and it is good to moisturize, so I am constantly rubbing myself down with something.
Always keep your doctor informed, and be very gentle with your poor radiation site: gentle cleansers and loose fitting clothing. You remember the ugly bras from the mastectomy? Keep them, because they will come in handy. You don’t want to ruin your good bras with all those oils and gels.
The doctors don’t usually tell you about the weirder side effects.
Tightness: I had radiation post mastectomy and post tissue expander inflation. I was just getting my range of motion back when I started radiation. Radiation treatment made my muscles tight and sore, like after a work out. So I am going to physical therapy to get my range of motion back while every radiation treatment works against me. It also makes the “holding your breath” more difficult. Every day, the same amount of breath feels different, so I can’t really tell how deep a breath I am going to have to take until I do it wrong. I do stretching throughout the day to combat this tightness. And if I feel a little like a weirdo for standing against the wall will my left hand straight up while in the office, it’s a small price to pay for mobility.
Fullness: Women describe nursing and their milk coming in as a fullness or heaviness. You get the same sensation with the radiation. Your tissues become inflamed (your body fixing the damage to the healthy cells) and you get a little fuller or swollen. It feels a little bit like an expansion with the tissue expander. Wear loose clothing, and sometimes a Tylenol or ibuprofen works wonders (or use some of the leftover medical marijuana from chemo).
Zings: This is a more rare side effect, and maybe only for those of us lucky enough to keep feeling in the skin of the breast (YAY FEELING!!). During treatment and throughout the day following treatment, I get a sensation on the site of the treatment. Sometimes it feels a little like the tingling of neuropathy. Most of the time, it feels like a strong static electric shock. Sometimes it feels like a dog shock collar or briefly touching an electric horse fence. It’s not painful, exactly—just somewhat unsettling and very uncomfortable.
• Exercise (even if it’s just taking the stairs or walking).
• Stretch. If your doctor didn’t talk about physical therapy, ask her. Even if you DON”T do physical therapy during treatment, look online for good exercises, then ask your doctor about it.
• Caffeine or plan your day around your tired times.
• Accept help.
• Use the off days to recover. Rest, stretch, and eat healthy food.
• This too shall pass. Dealing with the discomfort and side effects is way easier when I remember this is a short amount of time. Radiation has short appointments and (generally) lasts only weeks. I can do this for five weeks.
• Don’t struggle (hahahha… but seriously, the more you can keep still, the better your treatment can target your cancer and the quicker you are in and out).
Updated to add that you are going to ruin some clothing. Bras get the worst of it, so use your ugly mastectomy bras or old sports bras. I keep some sort of goop on my skin all the time, and coconut oil /cannot/ come out of some fabrics. Use this as an opportunity to use then throw out shit you don’t really need anymore. How long have I had these sheets for anyway?
Most complete list of side effects I’ve found: http://www.upmc.com/patients-visitors/education/cancer-radiation/Pages/radiation-breast.aspx