Radiation can be extremely scary for someone going through breast cancer.
Not like cancer isn’t scary enough as it is, but the thought of all the side effects of radiation from literally burning yourself from the inside out wouldn’t really make most people all that comfortable… I myself being one of them.
I couldn’t express my hatred for radiation enough when I first got diagnosed with breast cancer and would get asked if I would do a lumpectomy or a mastectomy come surgery time. When you do a lumpectomy, the surgeon removes your tumor, along with a small amount of healthy tissue that surrounds it. This ensures that all of the abnormal tissue is removed with the tumor. It’s mandatory with a lumpectomy to have radiation because they can’t guarantee the removal of all the affected tissue.
Radiation therapy is treatment with high-energy rays called photons, that destroy cancer cells. A machine rotates around your body and focuses the radiation on the area affected by cancer. In my case, it was only my left breast despite having both of them removed.
If you’ve been following along with my journey, you know how adamant I was about wanting a mastectomy, even before my diagnosis. Amputating my breasts would be the most efficient way (I thought) to ensure everything that could have come into contact with my tumor, would be removed. Since I had no known spread beyond the left breast, I knew that I would have a greater chance of avoiding radiation by going with the mastectomy. However, we know this wasn’t avoided thanks to my pathology coming back with microscopic traces of cancer in one of my sentinel lymph nodes.
In order for my radiation team to be as accurate as possible on where to focus these beams and configure the proper dose of radiation, I had to go through a simulation. In this simulation, my team set me up to go through a CT scan to map out the specific targeted areas.
Here is where they had me do a “go through” while breathing normally and another holding my breath. For patients like me with left-sided tumors, your team should be conscious of your heart. Holding your breath expands your lungs to help push your heart down and out of the field of view. This will help to minimize the amount of “radiation splatter” that’s experienced in the surrounding areas.
After my simulation was complete, I received some new tattoos that would create the barrier on which these beams will be focused. These tattoos are indeed permanent and would help my radiation techs quickly set me up each day, to ensure I was aligned properly. It took my radiation team about a week from my simulation to create my plan based on my body composition. My team needed to be so specific on where to focus the radiation so that we would minimize any unnecessary radiation to the surrounding organs.
April 26th, 2021 officially began my first day of radiation. The first session lasted the longest for me, which was about 50 minutes. I was having trouble holding my breath for the duration of each pass over, so the machine kept having to stop (whoops). My specific treatment center has this cool gadget that displays a laser “netting” over your body once you’re set into alignment. This is to ensure that your breathing is monitored down to the smallest measurement possible.
That way if you cannot hold your breath for each pass, the machine will automatically stop. It’s a way to keep protecting your surrounding organs: they don’t want you doing a deep breath hold, and then let out all of the air in your lungs. This would then bring your heart back into the field of view, giving unnecessary radiation to a vital organ.
Each session after that only lasted about 30-45 minutes. Doing the setup of ensuring my alignment was perfect, took more of that time than the actual procedure itself! Another item that was added to my treatment was the use of a “bolus”. This is a tissue-equivalent type of material that’s placed on the skin’s surface. They use this to trick the radiation into thinking your skin is thicker than what it really is. This is to ensure most of the dosage is being targeted to the tissue rather than penetrating deeper into your body.
Since I don’t have anything inside my foobs besides tissue expanders (no ducts, fat, etc.), there’s nothing for radiation to really take care of any deeper. This is also another “security blanket” to help keep the dosage of radiation away from my heart and lungs.
The standard of care at my treatment center for radiation of Triple Negative Breast Cancer (Stage 1), is 5 weeks consecutively, Monday through Friday, for a total of 25 rounds. If I would have had to miss any during that timeframe, they would tack those missed days onto the back end of my treatment; but that isn’t recommended unless it’s absolutely necessary (ie: technical difficulties, skin breakdown is far too bad, contracting any sort of illness, etc.).
Each of my treatments was between the hours of 1pm-3pm. The idea behind that was so that if I did end up getting tired afterward, I could just go to bed earlier rather than taking a nap in the middle of the day and messing up my sleep schedule. On the flip side of it, I could focus on working out in the morning to ensure I got my daily exercises in to stay as active (and limber) as possible.
Radiation treatment is cumulative, you don’t start seeing or feeling the side effects until about weeks 2 or 3. I did notice though that by the end of week 1, I was a bit more “dazed” after treatment. Think of it like how you spend the day at the beach, you get home and you’re just spent; even if all you did was lay on a blanket all day. By the end of week 2, I could start seeing the targeted area begin to get slightly redder right after treatment.
Once the end of week 4 hit though, all bets were off. I was absolutely, utterly, MISERABLE! I couldn’t really put my arm down, I had a rash under my foob (referred to as friction burn) from my sports bras, and the top of my chest was SO DAMN ITCHY! I went from 0-100 real quick. I couldn’t believe how quick my body went from feeling like I could tackle this beast with no problem, to sitting in a room on fire trying to get out.
Both the doctor and nurse kept telling me each week though, how fantastic my skin was holding up. A friend of mine who’s also in Radiation Oncology up in Boston, MA at the Dana-Farber Institute confirmed that my skin at the end of week 4, looked like most patient’s week 3.
She’s the one who helped ease my mind going into treatment by giving me a lot of helpful tips & tricks to be armed with for each week’s side effects.
I stayed on top of my strict lotioning regimen to make sure my skin didn’t take a turn for the worse, and I was even wearing medical gloves every time I applied lotion to keep the chance of infection at a minimum. Not to mention I was getting tired of washing my hands every 10 minutes (I really don’t know how you Frontline Workers do it, kudos to you!).
Not only were the physical side effects starting to take a toll on me, but the mental side effects were also trying to take over. I was so uncomfortable in my own skin that I was beginning to travel down a deep, dark hole of depression. I was trying to grasp at literally ANYTHING to possibly make me feel normal, happy, or just a bit saner. I had so many mental breakdowns that I would cry at the drop of a dime because I just couldn’t take it anymore.
My husband even threw me a surprise pep rally to help keep my spirits up the day after my final treatment but because I was in so much physical agony, but I couldn’t even enjoy it fully. However, I absolutely couldn’t have been more full of love from seeing my support system surrounding me when I really needed it.
Unfortunately, since treatment is cumulative that means that when you stop receiving radiation, you will still see the burning get worse before it starts to get better. Most people will see their “peak” of side effects 1-2 weeks after their last day of treatment. I started seeing mine about 3 days after treatment.
My armpit was almost all black, my under foob was only a shade lighter, and I thought I was going to rip the skin right off my bones from how itchy I was. Not to mention how tired my shoulder was starting to get from constantly keeping my arm away from my body to avoid the pain I felt l every time my skin rubbed together.
I could barely even tolerate wearing a shirt. It felt like no matter what I wore it was made out of sandpaper, so I would end up just being topless or in my bridal robe with the front open around the house covered in Aquaphor or medicated lotion prescribed by my doctors.
By the time I had hit my 1-week post-radiation mark (literally on the head), my skin had definitely reached its highest peak of burning. I was peeling in my armpit and the new skin that was making its debut would burn anytime I put lotion on it. My chest could fry an egg it was so physically hot, and the amount of reddening matched, plus I still couldn’t put my arm all the way down.
Once the 1-week mark had passed, it was like my body hit a light switch to kick into recovery mode. The peeling became more apparent in my armpit, under my foob, and on the top of my chest, but the pain began to subside and was no longer hot to the touch. I was a bit swollen on the side of my ribs and around the tissue expander, but nothing that made my nurse or doctor be overly concerned about. The skin within the targeted area now all looked like a dark suntan with spots of pale, new skin peaking its way out and I could finally start putting my arm all the way down!
By the time the weekend of my 1-week post-radiation mark was over, the only thing that I really had to battle was fatigue. Since I wasn’t able to put my arm down or wear a sports bra, working out towards the end of treatment just wasn’t happening. I was lucky if I could get a 30-minute walk in. I wasn’t able to combat how tired I got with my usual exercise routines like I did during chemo, so I was mentally & physically drained.
I’m now into my 2-week post-radiation milestone and I can already FEEL the difference in my body. I’m becoming a lot more comfortable and mobile again. I’m still a bit hesitant with doing my upper body weighted exercises, so I’m focusing on long walks, lower body strength, and lots and lots of stretching. Once all the peeling has subsided, I’ll resume my daily lymphatic massaging and getting to work on loosening up the scar tissue that is forming.
I cannot even begin to describe the feeling of how Week 3 is. It’s literally like night & day from being fresh out of treatment. My skin doesn’t even look like it went through radiation. The only way you can see the faint skin discoloration is if you really, really look close enough. Otherwise, at first glance, it just looks like well, ME! I do have to say though that the muscle tightness now is about as compared to when I woke up from my mastectomy.
Despite my all-day every day stretching attempts, continuing to moisturize, and staying hydrated, I can’t seem to keep loose. I have to say though, I’d rather be tight than miserable in my own skin. I’m back to running (yeay!) now and even picked back up my weight training routines. Every night I do a bedtime yoga routine to ensure I maximize my stretching efforts, so hopefully, over the next few weeks, my muscles begin to remember how limber they once were.
If it weren’t for having a strong, knowledgeable support system around me I can only imagine what I could have looked like. I’m so thankful to have these people in my life and hopefully, this knowledge will help you in your radiation fight, cause no one fights alone in this community.