My Radiotherapy Journey
Updated: 6 days ago
The moment I finished chemo on July 24 2019, I was so relieved finally to be jumping into radiotherapy, the ”easiest” of the surgery chemo radiotherapy trio. “It’s just like suntanning!” said my surgeon.
After several discussions with my oncologist, he decided that the more straightforward type of radiation that delivers the beams in straight lines and requires only 15 sessions was not suitable for me. I really shouldn't be blogging about this because my knowledge of the medical terminology for radiotherapy is laughable, but i'm gonna try my best to explain it. The straightforward radiotherapy wasn't suitable because I had an implant inserted rather than a diep flap. The large width of my implant would mean that a straight line cutting along the axis of the implant would cause more of my heart to be affected by the radiation, since my cancer was on my left breast near my heart. By using a 3D radiotherapy machine, the downside would be more dispersed radiation on my lungs, but they could control the beams more accurately to minimize damage to the heart. To me, this meeting was unexpectedly stressful because I could basically hear the doctor asking me if I preferred to have heart disease or lung cancer. The 3D radiotherapy meant that I would have to do 25 sessions instead of 15 (the amount of radiation I receive in both instances are the same, but 15x would be more condensed while 25x would be more spread out, hence also easier on the skin), which meant nearly double the cost of the basic radiotherapy. Seeing my struggle between the two and knowing the huge costs we paid for private healthcare, my wonderful oncologist gave me a hefty discount on his fee, and he helped me make the decision to go ahead with the 3D versa HD with an added active breathing coordinator, which helps you hold your breath and therefore expanding your lungs while the beams are being fired, to further minimize damage to my heart. I was pretty worried about heart disease since my family seems to have a history of high blood pressure and coronary disease, but it was heart warming when my doctor told me that I could change my future through a healthy lifestyle and exercise, it really is possible to do better than the statistics! While you want to be well informed about everything that’s going on, it is a huge burden to be making these medical decisions that could have such a huge impact on your future, and it’s really a blessing to have a great doctor, or family member, who can really advocate for you and make decisions on your behalf, or just take the time to help you brainstorm and evaluate the pros and cons.
At the RT planning session, I paid almost half of the entire treatment cost ($$$$$$) because I later realized this appointment consisted of the majority of work from my oncologists and radiologists. I had to lie down topless on a RT simulator and they made a mold of my entire body, which I was to lie on every single time after this for accuracy in measurements. Then they did several CT scans of me. Based on the scans, they were able to pinpoint the exact location of treatment, and they drew lines on my body to help their lasers match my body up to the machine exactly. The location that the radiation was emitted to has to be totally accurate to the millimeter (YOU LITERALLY CANNOT MOVE, BREATHE, SCRATCH YOUR BUTT, ANYTHING). After that they taught me how to breathe through a tube which would stop airflow when my lungs filled up to the desired point, after which I would have to hold my breath for 20 seconds at a time. I practiced this for almost 30 minutes and the machine still showed that my lungs were leaking air. I was super frustrated and my mouth was bone dry from being open on the tube for half an hour, but after a while I realized that I could limit leakage by biting down firmly on the tube, and also using my tongue to block out the air. They didn‘t teach me how to do that and I really had to experiment myself. When I finally got it right, the planning session was over. They put tape over the markers on my body to protect it (which were super hard to keep on in 34°c weather), and I was able to leave. My body was so sore from not moving, I looked at the clock and it had been 3 freaking hours. The actual RT wouldn‘t start until a week later, during this time my oncologist would review my scans and assign the correct radiation dosage for the radiologists. My only job till then was to make sure the markers on my body wouldn't come off by limiting my shower time and soap usage, which was also PRETTY annoying in the middle of summer.
Once my sessions started, I realized that each one was very similar. I took off my clothes in the locker room and put on a robe which I took off when I got to the machine. I would lay down and they would take 5 minutes to match my markings up to the machine. Everyone would leave while I took 2 x-rays (one from the top and one from the side) with my breath held to see if my positioning is right. If it was right, the radiation beams would come 6 times, at under 20 seconds each. Sometimes, and this is the part that I realized gave me a ton of anxiety, the positioning wouldn’t be right and they would come back in to move me like a millimeter to the right and redo the 2 x-rays. If it still wasn’t right, they would move me again and redo the x-rays again. At the first session the main radiologist guy who did my briefing said, "if you have any problems just talk to me, I'll be here for you every time" and that gave me all the warm fuzzies and a sense of security. But then I realized that the radiologists were the same every time UNTIL THEY TOOK THEIR DAYS OFF (THE HORROR!) and that’s usually when the positioning wouldn’t be right. You would think that they literally just match the lines to the machine, right? How could you freaking get that wrong 3 times?? But apparently little things like how far up you should put your arms (this affects how your ribs move), and how the breathing tube should be positioned (this affects how relaxed you are), and how low you pull your pants down (if you have to wiggle it down once you’ve laid down it’ll affect your spine curvature) matter a huge deal. After this experience I feel deeply that no matter how much technology improves, the human sensitivity in touch and observation can never be replaced.
I would be extremely angry every time the new radiologists got the positioning wrong, because more x-rays means more unnecessary radiation to my already butchered body. At the beginning I didn’t know they were x-rays because they would say “okay we’re going to take some photos now!”. How naive I actually thought they were camera photos! Before every session in the waiting room I would pray that they get it right the first time, and sometimes they did, and sometimes they didn’t, and this would make or break the rest of my day. When they tell you that RT will give you fatigue, I can tell you that its true, you will be so sick and tired of going to the hospital every freaking day and hoping that it goes well and sometimes being disappointed. At the end of my 25 day radiotherapy, I had undergone over 60 x-rays, and it made me absolutely livid. I spoke to a radiologist about this and she told me, the X-ray radiation is nowhere comparable to the negative effects of radiotherapy, so it’s important to get the precision exact, no matter how many x-rays you get. If you are going through any kind of medical treatment, I think the level of trust you have in your healthcare providers really makes or breaks the experience. I feel like the service I got was excellent and my experience was great in general, but little things like how many x-rays I got and what the radiation from them would mean was not properly explained to me, resulting in tons of anxiety. Comparatively, when I did the chemo, I was told about all the possible side effects, and when I did not get the majority of them, I felt relieved and relaxed.
When I was briefed prior to the RT, they spent a lot of time going over skin irritations and breakage, itching and redness etc. It was totally unexpected that I got none of these conditions....to a point where I was not sure if it was actually working for me. The photo above was the worst of it for me, my armpit was darkened, and i had these dark spots inside the red outline. The red area was the area of my surgical incision and where my tumor was, so during every session they would put a piece of jelly on that area to help it absorb even MORE radiation. 2 weeks after radiotherapy ended, i was allowed to shower the area with soap again, at first very lightly, and gradually I was comfortable rubbing my skin more. My doctor told me to massage all the dark skin with coconut or olive oil before my shower, and rub the areas during the shower, and lo and behold, the dark areas would come off with dead skin. You just have to give it some time for the skin to regenerate and peel off. Be prepared for a really pink nipple! One weird thing i also developed was a weird acid reflux that happened all the time, not just after I ate. This lasted for several weeks and drove me nuts because every single doctor or nurse I asked did not seem to think it was caused by RT. But I'm convinced that it was. Luckily, it gradually resolved itself shortly after it started.
In terms of my implant, I was really worried that the RT would cause capsular contracture or change the shape of the implant. These side effects were fully outlined as possible on my waiver form, but thank goodness they did not happen. I did notice after a month that the whole treatment area was tighter than before, including my armpit, which kind of exacerbated the cording in my left arm where my lymph nodes were removed, but with a lot of stretching at home, i managed to resolve the pain permanently. For the longest time i had pain in my arm and I had sort of given up hope, thinking that this is something i'll just have to settle for. My parents were really sad that the ease of motion for my arm will forever be impaired, I told them about it over Christmas dinner and my dad cried. But gradually, things changed without me even noticing it. I made an appointment at the Cancer Fund to have my arm evaluated for lymphedema, and I planned to tell the nurse about the persistent cording, but when I got there to show her, I was surprised that the pain was no longer there. The body really is complicated and miraculous and its self healing capacity is something I think we all have yet to comprehend. So don't you underestimate your strength and resilience to overcome ANYTHING!
Well, in conclusion, my experience was underwhelming albeit anxiety causing, but very underwhelming. And no, it was not like suntanning at all.
TIPS FOR RADIOTHERAPY
Don't wear any kind of bra if you want to avoid skin irritation. I wore tank tops in place of a bra.
I ate a lot of natural food antioxidants (10 portions of fruits and veggies a day) during treatment and I truly felt like it helped to minimize my side effects. I did check with my oncologist before doing so, and he told me that all natural foods are okay, but supplements are not because they may limit the efficacy of the treatment.
Don't apply anything to the treatment area. Normal creams have minerals in them which will cause your skin to burn after radiation. If your skin is irritated, ask your doctor for special medicated lotions.
After treatment is over, do daily massage on the treatment area to loosen up the tightened muscles. Also consider eating more high antioxidant foods to negate the effects of the dispersed radiation.
Your mental strength is important! Oh, it's like 25 days of suntanning, they say. But darling it is not. On the tail end of all your treatments comes really complex emotions like the joy of reaching the end yet fears of recurrence, doubts of where the end really is, worries about what life will be like when you don't see your doctor every week, etc. Coming near the end of treatment really means the sprint of survival is almost over, and now comes the marathon of life as a cancer survivor, which really has so much more to it than it seems. Make sure you have a strong support crew to help you through these emotions, and reward yourself EVERY. SINGLE. DAY.
If you are going through the same thing, please feel free to DM me via instagram, I would love to share with you, encourage you and pray for you!