Thursday 4 July 2019

This Is How We Rad...SBRT specifically;)

In my last post I noted having a consult with a radiation oncologist to discuss possibly doing some targeted radiation to my pesky sternum. After that consult I ended up deciding to go ahead with radiation. I realized this may be a good post to share the process of getting rads as I remember the first time ever in my life getting radiation and being completely afraid and just creeped out by the whole process.

The first time around with early stage breast ca (ebc), I remember really hoping I wouldn’t need to get radiation. I mean I think part of me truly knew the answer but I tried to be ignorant and hopeful which with this disease sometimes ends up biting you in the butt! For myself, I always had an association that radiation exposure=cancer.

I think one of the most helpful components, for me anyways, that reduces my stress level is to know exactly what’s happening and how things are to be done. I’m super anal with everything and have copies of all my bloodwork results, scans, basically everything so you get the picture of my anal retentive nature with staying on top of my health. I stop just short of trending my bloodwork just for simple sanity purposes clearly.

I always went looking for fellow bloggers when I looked for answers on what certain treatments may look like. You can read and be informed and educated on what to expect, BUT I have found only those living a shared experience can truly tell you with complete transparency what it’s actually like.

With that said, here’s the run down of the treatment I received, why, and the steps involved along the way:

I had about 2.5cm of active cancer in my sternum (3mo ago it was 1.9cm) so we knew it was growing and since the rest of my bones with a history of cancer essentially only show sclerosis and my brain 🧠 is totally empty (clear of mets but at times I feel like I’m missing more🙄) this option was more appealing. With that, my oncologist felt it may be a good time to explore the possibility of stereotactic body radiation therapy (SBRT). This is basically a very high dose of radiation directed at a very targeted area, without requiring a long course of treatment. SBRT typically goes up to a max of 5days (doses) really depending mainly on the size of the area being treated and the actual burden of disease. It doesn’t damage as much surrounding tissue which is wonderful for moi, getting it!

So with that all said, the cancer center I’m a patient at noted only starting to do this type of radiation (SBRT) here on sites other than the spine 6mo ago so I guess I’m glad I never radiated my sternum previously or earlier on in the disease course as this option wouldn’t have been available to me. They considered doing this rads on my sternum as “investigational.”

Some of the risks associated with radiating my sternum are actually linked to the fact that I had previous rads in 2012 to my chest wall after my ebc diagnosis and some of the radiation lines/beams would cross over, hence increasing some risks slightly. Those included possibly more skin issues and there’s a longer term risk of fracturing the sternum as the bone would weaken, along with one of my ribs. This bothered me but when I asked the rad onc he basically told me I could leave it and not radiate and my sternum would eventually break due to the cancer itself, or I could radiate and have that as a LONG term POSSIBLE risk. So that made rads seem even more worthwhile at this point. I really appreciate it when a physician lays it all out there because I feel the decision becomes a bit easier to make. As well, I would double my long-term risk of lymphoma and sarcoma down the road, but this is the deal with cancer: You need to evaluate the risks that exist right now to the potential risk that could happen 15yrs down the road. Where will cancer therapy be in 15yrs? You’re always left pegging and weighing one risk over another. It’s always a fine line and a constant balancing act of keeping the cancer at bay, whilst trying not to overtreat as that is also very taxing on the body, and this isn’t like accidentally taking a course of antibiotics when your illness is actually viral, although don’t get me started on the overuse of antibiotics and the fact that I feel superbugs are going to take over and kill a LOT of people - that’s a story for another time but come on people, NOT every little ailment needs that damn amoxil : public service announcement and random fun fact😉😁


Prior to ever getting rads, it starts with a simulation session so that the radiation onc & physicist can plan out the treatments to follow. Essentially, they take CT images whilst creating a mould over the spot of your body to be treated (the mould was more specific to SBRT). I was told that the type of mould I required would be one that would tightly
CT scanner for radiation planning
secure over my chest to prevent significant movement, along with deep breathing. These moulds are placed into this box with hot water which they quickly pull out and apply over the area to be secured as the mould hardens quite quickly. I did have to laugh as the lovely tech pulled it out & kind of threw it over and it half slapped across my face (think the cheese challenge where parents are throwing a piece of cheese on their kids face, lol) and all I kept thinking was this mould seems to cover my whole body. By the time she turned and realized where it landed, she apologized and threw the mould back in the bath as it was clearly hardening in the wrong position...aka my face
😂, lol. Once fitted, the mould was secured over my chest, neck, and chin, and then CT images were taken in place after it was bolted to the table. I think this entire planning process took about 45min, with the techs explaining the entire process. These planning sessions are typically also when they would give radiation tattoos to have markings that align. Since I had chest wall rads for my ebc diagnosis I had 4 tattoos that they stated they could reuse for my treatments, so I didn’t require more...that’s as bad ass as I am with “tattoos,” lol. I’ve essentially got four Polk-a-dot type tattoos.


Once the mould was created, it's secured to the table

They also take pics to see how your hands sit, and the position of the mould etc.. so that they can
make the set-up identical for when you actually receive radiation


After the CT simulation planning, they typically give a max of around 2wks to have it all planned out. My rad onc felt based on my specific circumstance that I could get through with 4sessions total. SBRT is essentially the same type of radiation I had on my brain 5yrs ago but that was referred to as stereotactic radiosurgery (SRS). It’s essentially as effective as having surgery to remove it as it pretty much burns a hole and obliterates the cancer. That radiation was very effective on my brain and I have never had regrowth at the site or any lingering issues. Plus, to be honest, I was quite shocked as to how well I felt when I had SRS on my brain. I truly felt pretty good when they radiated my head and it was a one-time session. Actually, I didn’t even take steroids with that one so I wasn’t expecting SBRT to my sternum to be too hard.
Essentially the part that is red
is the part that receives the highest
target of radiation with the other beams
showing what else will get radiated simply 
from being in the field. There's a reason 
these physicians go to school for many years
but that's the Coles notes version I suppose
Prior to starting rads I was instructed to start steroids the day of (anyone who knows me knows I HATE steroids so I wasn’t super fond of this idea and did want to ask the rad onc if it was an absolute necessity to take). I was also told to start panto (for heartburn and continue for 30days post rads), along with Zofran (for any potential nausea).

The first radiation treatment is typically slightly longer as they set up & ensure everything is properly lined up, and lasted approximately 30min from start to finish. My rad onc was there and spoke with the hubs while I was being treated, and he inquired about my questions about the steroids. He explained that the purpose of the Dex would be to try and mitigate a pain flare and inflammation that would happen. He did note that once swelling starts it could prove difficult to fit me into the mould and that it would likely be quite painful to squeeze me in, so it seemed like the most logical decision, especially when he felt I could double the dose of steroids if need be😳
. He also told the hubs to be aware of any signs of pneumonia once treatments were complete as that was a risk based on my one lung being in the treatment field. Long story short, I chose to be optimistic about the steroids and I truly felt I would have a burst of energy and so I made tentative plans to clean my house. I mean hard core, on my hands and knees cleaning every nook and cranny, as steroids typically would make me into the energizer bunny. Ya, that did NOT happen!!! Epic fail for spring cleaning over here 🙋...I’m still trying to find the energy to do this deep clean, lol.
The room & machine where you receive radiation


The room where you get radiation is large with one big machine that circles around you. Prior to every SBRT treatment they align you with the beams, secure the mould over you which, once hardened, is super TIGHT. Like good luck chatting as I couldn’t even really open my mouth (maybe the underlying motive was to shut me up🙈🙊
...the queen of rambling and random “fun” facts right here 🙋, lol)! They then also put my hands into this contraption which simply further secured and stabilizes to reduce any movement, along with a knee wedge for comfort.

Once everything is placed, the mould bolted to the table, then the techs leave the room and do x-rays prior to receiving the actual radiation treatments. From there, if the target is even slightly off they’ll reposition you or adjust where the bed is prior to beginning. The actual radiation involves this large machine rotating around your body, with
A view from above

radiation essentially coming from different angles which were carefully planned by the radiation team. The machine makes a slight buzzing noise, and then before you know it it’s done and finished! You don’t feel anything during the actual rads, BUT I did realize even after the very first one that this felt different from when I had SRS on my brain.


Later after the first dose I was bagged and SO tired. It felt like it hit me out of nowhere and I was a bit surprised (not sure why as it is radiation), but I think I was expecting it to be more similar and easy as when they did that one spot on my brain, granted this was a larger area being hit so maybe that’s why? I decided to go for a little walk with our dogs and my hubs to see if the fresh air would help. Ya, not so much. That night, the hubs and I started a new series on Chernobyl. Ironic. Don’t know how we thought that was the show to watch literally after just having radiation😳. Holy shit balls!



After the third treatment I had noticed very slight pain to my sternum but nothing that required any additional pain meds, but the sleepiness was a whole other beast. I absolutely take care of myself, drink, and rest as need be but I honestly haven’t napped in years...maybe even before 2012!! The thing that’s tough with radiation fatigue is rest doesn’t do anything. You sleep, you wake up, and you feel exactly as tired as you did before going to bed. It’s a bit frustrating & so I rest and lay on the couch and lotion my chest with the Galaxyl cream. Just living the life in my 30s, lol.

At this point I think it’s fair to say that I feel a bit like a nuclear
☢
️ disaster!! I had 20 rounds of regular rads to my chest wall, axillary nodes, and supraclavicular nodes in 2012, one round of SRS to a solitary brain met in 2014, and now 4rounds of SBRT to my sternum. I’m hoping this treatment obliterates what cancer I have in my sternum and provides good local control for a very, very long time!!
It was at around week 3 when I noticed my skin start changing and we were at about episode 4 of Chernobyl, lol. Spoiler alert: it’s about the time when the workers started losing all the skin on their faces and bodies, so really stellar timing on that too😬👎. The fatigue is cumulative, so you guessed it, I am dragging my butt and I’m bloody tired!! I did end up needing to stop chemo prior to, during, and after rads so I had 5wks off which I was excited about but in the end it really did feel like I replaced one toxicity with another. Super peachy😄. 
And just for good measure this was the change room selfies documenting 
each radiation session.

UPDATE: It has been two months since I completed SBRT (and clearly this blog post, lol) and my skin held up great to the point that it looks pretty much completely normal! I had a lingering cough that lasted about a month along with some issues swallowing in the immediate post-rad interval that they thought may have been related to a radiation burn to my esophagus. Really the one thing that lingers is this fatigue that comes on out of nowhere and makes me feel exhausted. I think what is important to mention that I feel many don’t quite understand, is the fatigue can come on out of nowhere, and despite looking like everyone else I struggle with the overwhelming sense of it. Therefore, if you know someone who has cancer and has recently completed radiation therapy please be mindful and respectful of the fact that we may look well but that does NOT translate to actually feeling well!! I’m trying my best to be there for friends and get together, but at times I feel like a shitty friend because I just can’t do it. So please understand that this isn’t a feeling of being tired because that’s easy to fix with sleep but this is an exhaustion that no amount of sleep or rest will fix. With that said, the SBRT I completed two months ago already shows a significant decrease in metabolic activity to my sternum which makes all the fatigue, lack of appetite, and basically everything worth it!! Now if only others could be as lucky that would be the only thing that could make all of this good news any sweeter.