Surviving side effects – What is radiation necrosis?

Surviving cancer is one thing. Surviving the side effects of treatment is another thing.

When Xavier relapsed last year our main goal was to treat the cancer – to stomp out the dragon in his head as we often referred to it to Xavier. And that’s just what we did. In May, his MRI showed the dragon was dying. But what the MRI didn’t show was that in the process of stomping out the dragon, we were also stomping on healthy, normal brain cells.

Understanding Radiation Necrosis

In simple terms, the radiation he received was like a bomb. It was precisely targeted at the enemy, but the enemy was surrounded by innocent citizens. When the bomb exploded it took out the bad and the good. This made every cell in that area of his brain angry.

In medical terms, the radiation dose caused the tumour tissue to become necrotic. Dead or necrotic tissue can become toxic to surrounding normal tissue, and severe swelling occurs. Depending on where the tumour is, there could be minimal symptoms when this happens. However, in Xavier’s case, the tumour is so close to his brainstem that even a millimetre of swelling put pressure on this important brain structure resulting in life-threatening symptoms.

This poorly understood side effect can occur even when the most stringent measures are taken to avoid exposing healthy tissue to harmful levels of radiation. The only treatment options typically available for paediatric radiation necrosis of the brain are surgery to remove dead tissue and use of the steroid dexamethasone to provide limited symptom control.

With treatment comes another round of side effects. Surgery was unsuccessful, which leaves us having to use steroids for an undetermined time. The steroids have caused him significant weight gain, eaten away his muscles, left him immobile and unable to produce his own stress hormone to fight infections.

Prognosis today

While untreated radiation necrosis of the brain can be fatal, Xavier is showing significant signs of recovery. We have been successful at transitioning to a less harmful steroid at a lower dose with minimal recurrence of his original symptoms. He is learning to walk again and has started rehabilitation for his left-side weakness after his mini-stroke.

But the best part is the change in his personality. Our boy is laughing again, he is smiling and taking an interest in things he used to love.

Xavier – October 6, 2016

Six weeks ago my husband and I were given news that would make any loving parent crumple up into a ball of despair.
Your child is dying.
On August 2 a trusted surgeon who has seen us through our seven-year battle with our son’s cancer reluctantly gave us the news. His tumour had doubled in size within two months. The cancer was angry. The last round of radiation only fuelled its furry as it aggressively invaded Xavier’s brain.
Our only option was surgery to temporarily relieve his symptoms as he would suffer a terrible death from brainstem deterioration.
Imagine having to digest this news as you sleep on a chair beside your ill child in hospital.
We spent the weekend in mourning.
By Monday his team of doctors, including his radiation oncologist, surprised us with another possibly theory.
The tumour may not be cancer at all. It may be a mass of decaying brain tissue severely damaged by radiosurgery.
Reluctant to believe this was the case, we continued to process the fact our son’s life was limited. We may only have months left to enjoy any quality of life.
We started planning his funeral.
Xavier headed into surgery and we were referred to the palliative care team at McMaster.
Surgery was unsuccessful and yielded no more answers than the initial MRI images (which we saw) clearly showed a large mass between his brainstem and cerebellum.
We grieved some more.
His condition deteriorated after surgery. He lost all mobility. The high dose of steroids to control the brain swelling stole him from us. We had lost our boy already and had only limited time left.
Our hope in the theory this was a treatment side effect and not cancer faded.
After six stomach-twisting, head-splitting and heart-throbbing weeks, we got answers.
Xavier was not dying. Instead, he is suffering from a serious – sometimes fatal – side effect of radiation treatment. On top of that, his shunt failed and he was experiencing extreme side effects from treatment of the treatment of the treatment. Yes you read that right. The cancer treatment caused the problem which led to another treatment that caused other problems which required more treatments.
The reality is the treatment for cancer is just as dangerous as the cancer itself. But in our case with no more options to treat his cancer, the treatment side effect is a blessing.
And as ecstatic as we were to get this more positive news we are cautiously optimistic. We have been on this roller coaster long enough now to know the dips, twists and turns of the ride. With his type of cancer, cells could easily be sleeping and wake at any time. They have been known to sleep for much longer than other cancers – which is why we will never hear the words he is cancer free. Rather, we celebrate no active cancer.
However, this tunnel has a bright light at the end and we are moving towards it, albeit slowly.
Our day to day life did not change with the news it was not cancer. Emotionally a weight was lifted, however, we still look at our son and see a stranger. He still requires constant care, cannot walk or even roll over in bed at night and will receive steroid treatment for months for the radiation necrosis.
These are the physical obstacles we manage daily, but there are far more emotional challenges.
But we will face each day with a smile knowing we will now get to that day where things are better and Xavier is himself again.