Ep 15 Chin Chats: What I'd Do Differently After Breast Cancer Radiation - 3 Important Lessons

Hey everyone, welcome to Chin Chats. I’m so happy you’re here, thank you for joining me. I want to say for a moment about how appreciative I am of your support and listening to this podcast. It really means so much to me. And what I have found is that more and more people are listening, which is so amazing, but they’re not subscribing or following the channel. And look, these things really make a big impact, especially as a new podcast that is breaking into the market and growing. And let me tell you why: when you subscribe, or you follow, it tells that platform that “hey this is good content, I like this.” And that really helps, a lot. So if you find value in my mission, of teaching women how to advocate for themselves and their health, then I’m going to ask you to please subscribe or follow this podcast. It’s not a big commitment, you just hit that little button, and if you ever want to unsubscribe later, you can do that, no problem. This is a small action that makes a huge impact, so that we can all continue to learn together, and like I said, I’m just so appreciative that you’re here.

Now, this week in The Hairy Chin Newsletter I talked a lot about breast health - I’m a Breast Health Educator for the amazing Know Your Lemons foundation, and we talked about breast cancer, even breast implants, so I thought this week for Chin Chats it would be a good opportunity to share my personal experience with breast cancer treatment, specifically chest radiation. Hindsight is quite often 20-20 and looking back now, there are things I’d do differently, and I’d love to share those thoughts with you. Please remember that I’m not a medical professional and it’s always advised to follow the advice of your doctor who knows your body, your diagnosis and your treatment plans. Everyone’s medical journey is their own, so it’s important to do what’s best for you.

Ok, let’s chat!

inoma In Situ) in the Fall of: 2023

Ok, let’s talk about my thoughts on the radiation experience because there are three things that I would really do quite differently if I were going through this again. Those are breathing, hydrating and moving. Sounds simple enough, right? In a way, yeah it is that simple, but at the time I wasn’t aware of their importance and the reasons behind the actions. So I want to explain why I feel this way and some details about it, with the hopes that this will help anyone else going down this path.

Ok, let’s get started. Number one. Breathing.

Let’s talk a bit about the process of chest radiation - specifically left chest radiation - which is what I had due to where the carcinoma was found, in my left breast. The heart is in the left chest cavity, and chest radiation can cause damage to the body - I’m talking the muscles, the fascia, the organs - like the heart. I’ll mention more about this when I talk about movement. But in terms of the chest and radiation, this is really a lesson learned kind of situation - in the past, a lot of people had some significant heart issues from chest radiation before doctors realized that, “Well, perhaps we need to figure out a way to protect the heart.” So they did.

The technique used is called Deep Inspiration Breath Hold (DIBH). Now, you might think of "inspiration" as a creative concept, but in medical terms, inspiration simply refers to breathing. To inspire is to take a breath. Fun fact: the word "inspiration" actually comes from the Latin root meaning "to breathe life into." So, in a way, breathing and inspiration are closely connected.

But let’s get back to the radiation process. So, doctors needed a way to protect the heart and they realized that when the lungs were fully expanded from inspiration (or a deep breath), that this moved the heart slightly away from the chest wall, which actually created a safer distance from the radiation field. So this is the technique that was used during my radiation sessions. Let’s walk through how DIBH works.

So, you lie on the radiation table on your back. A sensor is taped in the center of your chest. This sensor is going to measure your chest rising and falling with your breathing. They then bring a little digital screen around and put it in front of your face. It has a white background with a green box near the top. When you breathe in, a black line appears and rises on the screen. When you breathe out, the line drops. Your goal is to raise that black line so that it’s hanging out in the center of the bigger green box at the top of the screen. And once you’re in that ‘sweet spot’ so to speak, you then hold your breath. The breath hold can range from 15 seconds to 40 seconds, it really depends, for me this was the range. And you’ll do this for the entirety of that radiation session - I can hear the techs - deep breath, hold, breathe out. (Well actually, they said it in Spanish: inhala, aguanta, respira)

Now in my experience, these sessions lasted around 10-15 minutes, so it wasn’t crazy long, but if you’re not used to deep breathing and holding your breath, then it can seem a lot longer. Another piece of info here - that sensor we talked about - it’s pretty nifty. If you release your breath too much and that black lines falls outside of the green box, the machine stops. The buzzer sounds, the red lights goes off, power down mode. Well, maybe not power down, but because then your lungs aren’t filled with enough air and your heart isn’t protected, everything stops. So, what happens? You have to start over. Not the whole session, but that segment of the session. And you just keep going until you complete all of your segments. But yeah, breathing during these sessions is quite important.

I will also add that there are a lot of emotions when you go into a radiation room and lie on a table with a big machine. You’re naked from the waist up. It’s a bit nerve wracking. And cold. And then add onto that this breathing technique where you have to hold your breath, it can be a lot. There were sessions, especially at the beginning, where I walked out feeling quite dizzy - not from the radiation but from the breathing and the anxiety.

A few thoughts if I were doing this again: I would practice calmly holding my breath at home. Just to practice. Lying in bed, eyes closed, gently breathing in and holding for 20or so seconds, relaxing into it. Because it’s not just about staying calm in that cold, exposed moment - deep breathing directly impacts your body’s stress response. By practicing at home, it could help train the body to better cope with the stress during the actual sessions.

Ok, let’s move on and talk about hydration because that’s something I would have done differently also. I’ll be honest, this is something I didn’t pay enough attention to at the beginning, but I quickly realized it was more crucial than I thought. For me, there were two effects of radiation that were the heaviest - one was the fatigue and the other was the skin effects. The radiation really dries out your skin, almost like a really deep, lingering sunburn. I have a history of severe eczema and my skin is quite sensitive to creams and lotions. At the beginning, the first week of radiation, I used 100% shea butter, which for me worked always works well on my sensitive skin. I also did switch my hand and body soap around that time to an all natural castile soap - the brand I continue using to this day is Dr. Bronner’s and I really love it. The effects weren’t so heavy the first week but towards the middle of the second week I really started feeling the burn. My skin was setting quite sensitive, showers were uncomfortable. It was also winter and the warm water was like hot water on a sunburn - which also just dehydrates the skin even more. BY the third week my skin was quite angry and the shea butter wasn’t quite cutting it. My doctor had me switch to a cream called Bepanthol. It was a life saver for me as by that time my chest was really red, inflamed with some darker areas. Especially the crease under my breast. Using the Bepanthol three times a day really helped my skin. I would say about two weeks after the radiation ended, I started alternating the Bepanthol with the shea butter, and that worked really well. I continued hydrating my chest for months. I fortunately didn’t have any open sores, some women get them in the crease under their breast, mine was very dry and crusty, but luckily it never opened or got infected.

A few thoughts if I were doing this again: I would start hydrating the moment I knew radiation was coming. For me, once I had begun in that first week, it felt like I couldn’t keep up, and my skin was still struggling to recover. I would start hydration before the radiation starts - like from the day your oncologist mentions the treatment. It’s important to note that you can’t hydrate before a radiation session, as it interferes with the sensors they use during treatment. So, always check with your Onco-radiologist for their recommended hydration schedule that works with your treatment plan. Another mention here is that hydration isn’t just for the outside. Drinking water is crucial to all kinds of recovery - radiation is no different. Hydration not only keeps the skin supple but aids in recovery by flushing out toxins from the body and replenishing fluids lost during treatment.

Ok, let’s talk about movement. It’s a big one and for me I would have moved a lot more. Let me explain a few things here. When you lie on that radiation table we talked about earlier, you have to put your arms above your head. It has a technical term for it, but it’s the same as when you have a breast exam at your doctor’s office, except both arms are up, flat with elbows out for about 15 minutes. If you’re not flexible or if your shoulders don’t like to lay flat and above, then it can be uncomfortable. Also, remember how I said that radiation can damage organs, fascia, etc. The way I was explained it is that it can make these things sticky. These layers can get inflamed and stick to each other and this ’stickiness’ can really limit your movement over time. For me, the real issue came after the radiation. I experienced tightness in my chest, a loss of range of movement in my left arm and some cording in my armpit - a feeling like strings pulling under the skin. I also developed mild lymphedema in my arm due to some fluid buildup. All of these, by the way, are quite common during radiation, but movement can help.

A few thoughts if I were doing this again: I would have moved my arms and upper body more often - things like arm circles before the sessions and overall more movement afterwards. The phrase I love here is “motion is lotion” and it’s so true. Increased mobility helps prevent stiffness and speeds up healing by promoting circulation, which is crucial when dealing with the aftermath of radiation. Now look, you have to give yourself some kindness here - these sessions build over time with really heavy fatigue and painful skin issues. I’m not saying you should be doing jumping jacks every day, but some movement may help decrease swelling and increase mobility. It’s all about finding a balance that works for you. Gentle stretching, arm mobility like arm circles, even light yoga. I found that a few lymphatic massage sessions after I wrapped the radiation helped move the stagnant fluid from my arm. Again, always run it by your Onco-radiologist - they probably have some great tricks up their sleeve to help you get through the treatment.

So, to recap, if you’re about to start radiation or are in the middle of it, here’s what I’d focus on: deep breathing, hydrating (inside and out) early and often, and movement - gentle but consistent. It’s not easy, but it’s worth the effort. And my hope is that by sharing this, it might help even one person feel a little more prepared, a little less anxious, or a little more empowered.

As always, I’m not a medical professional, this is just my personal experience, please speak with your doctor about what’s right for you.

If you’re going through radiation or supporting someone who is, just know: it’s okay to feel overwhelmed and uncertain. You (as a patient and caregiver) are navigating a tough journey, and it’s perfectly natural to have days when it all feels too much. But know that you are not alone. You’ve got this. And there’s a whole community here rooting for you.