Radiation

"Sometimes you have to burn yourself to the ground before you can rise like a phoenix from the ashes."

 - Jens Lekman

Radiation is designed to "mop up" any cancer cells remaining after chemotherapy and/or surgery. Sometimes it's needed, sometimes it's not. Here is a rundown of what I learned.

To Start

Scheduling – First you will see the radiation oncologist for an appointment. They will schedule a CT Mapping where they find the guides to where they will be doing the radiation. At this appointment they will schedule all your radiations for the duration. If you need a set time because of your work/life/traffic schedule, ask for it. If they can’t give it to you, back up the radiation until it fits into your schedule. You will start your radiations two to three weeks later (unless you’ve backed it up). They will be daily, Monday through Friday, weekends off.  It won’t matter what day of the week you start.

Gown – When you first go in for CT Mapping, they will show you where the gowns are, the dressing rooms are and where to put your clothes. This will be the same for all radiations. You put the gown on then wait in a waiting room to be called. In hindsight, I should have just bagged the gown and stripped off the t-shirt once I was in the room. It would have saved someone lots of laundry. Your whole top half will be neked for radiation.

Music and Blankets – In the darkened, cold radiation room with the big machine, they will ask you if you want blankets and which music you’d like. This information will go into a computer and you will have the same thing every day. Take whatever makes you comfortable, and if it changes at any time, feel free to bring  it up.

CT Mapping – This is where you lay on a table for one to two hours, in one position. Your gown is removed under you and your arms are above your head.  You lie on a flat, hard table, bolster under your knees. The table moves back and forth, and there is a round, open donut at your head.  They will measure, tape, put wires on your chest and tape them down, and draw marks all over your chest. You need to lay still for all this because this determines the guide for all 16-33 radiations. If you are having breath hold (for left side breast cancer) you will practice this as well. Breath hold is done to protect the heart (you breath and it moves your heart out of the way; you hold your breath to keep it there). Besides the techs, the radiation oncologist will come in as well.  You will also be photographed, which goes in the file.

Tattoos – You will get permanent ink and needle tattoos. They are the box in which you will be radiation. The radiation field is not just on your breast. It is into your armpit and down the side of your chest. I had one in between the breasts, on in the armpit area and one down the side on the ribs. This square is exactly where my chest was radiated.

Techs – You will probably have the same techs/nurses every day. You get into a routine and will see them for a month or two. They are usually very friendly and there are usually two in the room for mapping and setting you up for the radiation. They can also be men, which can be disconcerting. If you are not comfortable with that, let them know. I did have a male and he was very professional. Still, it was awkward because you feel very vulnerable, chest bared and arms above your head.

Timetable – After mapping, there is a couple weeks where they have to get everything “set up”. From there, you will already know how many treatments you will be having. The standard is 33, but they have sometimes gone to 16. The 16 are the same amount of rays, just a shorter period of time. So you are getting a heavier dose each day, but shorter time frame. They tell you three weeks, but somehow it isn’t 15 days, its 16. Same with the 33 – they tell you six weeks, which would be 30 days, but it is actually 33. New math, I guess.

The Day of Radiation

Actual Radiation – On the first day of actual radiation, you are led to a machine that is probably not the machine that you saw. This one has a flat table and a huge arm to the side. The table still moves back and forth, but the arm moves over you as well. You will hear the same music from mapping, and get the same amount of blankets. Once laid down, bared, and arms up, they will start adjusting you. The lines have to match up exactly how they were at mapping. Sometimes you move, sometimes they move the blanket under you, sometimes the table moves. Then the techs shut a huge, heavy door to go behind a two way window and they have two cameras that watch you. They talk to you over an intercom and give you instructions if necessary. The machine will beep and move over you. There is a whizzing sound and a bright red light. You will begin to notice a pattern to where you are in the treatment. Breath holds will occur if necessary. Once the techs have left The Vault, the actual radiation only takes about 10 minutes. The longest part is changing into the gown and getting lined up.

Pain – Nothing hurts while you are getting radiation. It’s not hot,  you can’t feel anything. I kept thinking maybe I was feeling something, like a tingle, but I don’t know that I did.

Breath holds – If your cancer was on the left side, you will probably need to do breath holds to protect your heart. These can be complicated because you have to suck in your breath and hold it, and normal sucking in of the breast moves your entire body. You have to do it not whole body with this because otherwise you move out of alignment. You have lots of practice during mapping. I wasn’t sure if I could even do it after chemotherapy, and would practice. I could never get past 13 seconds. During radiation, somehow, you just manage to do it. Sometimes you will take a deep breath, stop, and they will tell you deeper. For me, I couldn’t do this and we just started over.  I also did have them tell me when I was halfway done with the hold so I at least had some hope. Also, if you breathe or move during a zap, the machine shuts off. I know this for sure because I couldn’t do one of the holds. Sure enough, it shut off.

Side Effects

Skin – They say your skin won’t turn pink until the second or third week. It also might turn pink on Day 1.  Your skin will take a beating. “Like sunburn” they say. Really, no, but it’s the closest thing to compare. It will burn from the inside out, not the outside in. At some point your skin could actually peel and have open sores. Tell the techs and they can help with treating this.

Lotions – This one is all over the place.  Some centers want no lotion, some only want Aquafor, some only Aloe Vera. If you ask patients, everyone will swear by something different. Go with what your center (and techs – especially the techs) says to start. For me it was hydrocortisone cream (from the dollar store; went through four tubes), calendula oil and Cerave mixed with lavender infused lanolin oil. Most centers don’t want it on four hours prior to radiation. After radiation, slather up. I lotioned that poor girl up in the dressing room right after radiation.

Brassier or No Brassier – If you can get away with it, do not wear a bra at all during radiation. And don’t even think of underwire. Your skin will be raw and anything tight drives you crazy. My bra got stuffed in my purse for the drive home and heaven help the cop who might pull me over.  A tank top under a shirt will work. Radiation during fall and winter are great because you can wear vests over anything. Or scarves.  Cheap t-shirts from the men’s department at Target or Wal-Mart were also great. At one point I actually needed a size small shirt because the skin under my armpit would rub with my breast skin and hurt like hell. (BTW: corn starch on a large makeup fluffer brush was beautiful in the chaffing of the armpit and under the breast.)

Food – Stay incredibly hydrated during radiation. Just like the sunburn healing idea, water, water, water will help with the fatigue and keeping your insides going.  I also found upping my protein intake helped with healing. I didn’t go gonzo, but we ate a lot of chicken, string cheese, nuts and yogurt.

Fatigue – For some the fatigue kicks right in.  For others it kicks in two weeks down. But it will kick in. Two reasons. One, your body thinks it is being damaged so it is trying to repair itself. Two, you are having to drive to the radiation center every single weekday for weeks on end.  Some say radiation fatigue hits harder for those who have not had chemo. Those who had chemo know fatigue already. Radiation is just a continuation of what they’ve dealt with for months.  Those who haven’t had chemo are a bit blindsided by the level of tiredness, and the suddenness of the fatigue.

Boosts – These are the last 5 you might get. You will find out at mapping if you will need boosts. They are blasts concentrated on the spot where the tumor was (the tumor bed). It is a cone shaped part that comes  out of the machine that comes very close you your body. You don’t have to do breath holds for these, and they are sometimes faster treatment days. At some point during your regular radiations, you will have another CT mapping for boosts, taping and measuring and another tattoo. Sometimes you will be told you need boosts, get the mapping done, and then it is determined you won’t need them after all; it will do more harm to the tumor bed than good.

Costochondritis – Inflammation of the tissue in the ribs. The paperwork says this happens to less than 1% of patients. I know several people it has happened too, and I don’t know hundreds of people, making that bad math.  It can occur in the ribs to the side of the breast, making it feel like you’ve been punched. It can occur in between the breasts making it so you can’t breathe, and it feels like you are having a heart attack. Bring all this up to the radiologist immediately. I was told to take Aleve to get the inflammation down. It really does feel like a heart attack, though, and can scare the crap out of you.

Zingers – These are hot, lightening bolt shards of pain that come and go fast (hence, the term zingers). They start out of the gate after the first radiation and can go on for years. I was told this is because nerves are regenerating. A year and a half later I rarely have them, but when I do, it takes my breath away.

Weekly Radiation Oncologist visits – Once a week (they will tell you what days) you will have radiation as normal, and then you will keep your gown on and go across the hall to an exam room. A nurse will ask you questions. The radiation oncologist will ask you the same questions. Pretty much everyone would “like to take a peek” and see how red you are getting.  Bring up any questions for this. Also, bring someone. Another set of ears and another set of questions are very helpful.

After Radiation

Radiation is over, yeah, I can move on. Sort of. Actually the side effects continue, and get worse, 10-14 days after radiation is over. This is incredibly common and the one thing they actually got right for me. It will hurt more, the skin will get redder, any wounds will open up more, and you will cry with frustration. I’m not saying this to be mean. I’m saying this to be real. I know too many people who have planned celebratory trips leaving two days after radiation is over, only to be miserable.  One lady flew to Paris and has no idea what she did that whole week in Paris! The good news is that once this period is over, it gets better, and it gets better fairly quickly.

Follow up Appointment – Most radiologists set up an appointment for six weeks after the last radiation. For sure, if you feel the need, call and or go in earlier. Some radiologists will release you after that six week visit, some want to see you once a year.

Lymphedema – Since you probably had nodes removed, radiation just pissed that surgical site off. This means you could develop Lymphedema, the swelling of the breast, arm and fingers. Once it catches on, it is permanent.  Start this one out early, long before radiation, even.  A physical therapist that specializes in lymphatic drainage massage is worth the co-pay and cost of the office visit (although you will have probably met your out of pocket max by now, which means you don’t pay either).  They can also teach you how to do the massage on yourself to soften up your breast (it will get rock hard, hot and pissy from being zapped).  Take the time out of your day to have this done, and learn how to do it. BTW, lymphatic drainage physical therapists are hard to find. Keep looking, and you may have to drive. Also, surgeons and radiologists are not completely on board with this. They will tell you its fluff. It’s not. Ask anyone who has done it and had it help.

Changes In breasts – Following radiation there will be a red square on your chest. This may never go away. Even a year and a half later, I can see my box. It is very faded and probably not noticeable, but I can be self-conscience about it, especially in a tank top or bathing suit. My radiated breast appears larger to me, but in reality is actually smaller.  It could also be because a chunk was taken out of it. Bottom line, it does look and feel different than its counterpart. The hotness and firmness can take up to a year to settle down. Yes, it really does take a year.

Rib pain – Radiation can weaken the ribs. Some people more than others. This doesn’t go away, and I’ve heard of people, years down the line, cracking a rib while sneezing. It just weakens them, so be aware.

Last Note

Radiation is not necessarily "the easy part" – This is especially said when a patient has had chemotherapy, “Oh radiation will be a walk in the park after chemo.” For some, yes. For others, no. And it leaves you feeling like you’ve failed cancer treatment or something. No part about cancer is easy. Just like raising kids, you figure one thing out that makes it work just in time to move on to the next thing.