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.
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 |
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
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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.
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 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
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!!
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
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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.
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.
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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.
Judit, wow ..you have been through so much and everytime I read a post I really think you should be getting paid big bucks for this blog!!! You are doing so much for MBC advocacy. This is invaluable information for anyone going through treatment and for those supporting their family and friends. Thank you again for keeping us all informed and educating us all. Xox
ReplyDeleteI hope this rad treatment kills off the cancer in your sternum. Everytime I went into the radiation room, I got anxiety. I wouldn’t of made it if I had been put into a mould like you had. My mould was a thing I laid on.
ReplyDeleteI got 3 of those tattoo dots during planning. Damn they hurt! I said if this is what a tattoo feels like, count me out of ever getting one.
You did a great job of explaining everything!