CancerStory members' unpleasant experiences with their healthcare professionals
Contributed by Mr Gregory Pawelski living in USA, 17 August 2001
Whole Brain Radiation Therapy
Brain metastasis is a rare complication of ovarian cancer with only 67
well documented cases in literature. A multi-institutional study of 4027
ovarian cancer patients over 30 years identified only 32 cases while an
autopsy study of ovarian cancer reported an incidence of 0.9%.
My wife received postoperative whole brain radiation therapy for a
single brain metastasis in the Summer of 1998. She began developing
brain radiation necrosis within 6-10 months after whole brain radiation,
confirmed by an enhanced MRI in June of 1999.
Her radiation-induced brain necrosis could have been focal or diffuse,
depending on the modality of treatment. The five fractions of focal
radiation to the local tumor bed could have resulted in either focal
necrosis around the tumor bed or metastatic recurrance. In her case she
developed metastatic recurrance as per Pet Scan of August 2000 showing
abnormal foci of radiotracer accumulation within the right cerebellar
hemisphere, right cerebellopontine angle, pons and base of the fourth
ventricle consistent with new metastatic foci. Her previous tumor
resection of July 1998, was a 3.5cm necrotic mass in the right
cerebellar hemisphere. Recurrance of a cerebral metastasis was very
likely to happen in the future. It did, observed via an enhanced MRI in
May and August 2000. The Pet Scan in August of that year, confirmed the
Her additional twenty fractions of whole brain radiation resulted in
diffuse necrotic effects. The Pet Scan showed globally decreased
radiotracer uptake within the brain, bilaterally, consistent with
involutional change and prior radiation therapy. The MRI's showed the
ventricles overall were prominent and there was widening of the sulci
consistent with atropy. There was diffuse, abnormal signal intensity
within the periventricular white matter, consistent with post radiation
changes. The signal abnormality within the white matter appeared
slightly increased compared to her prior studies. An EEG of December
1999 showed generalized diffuse slowing that was significant with global
encephalopathy. It is most commonly seen in toxic metabolic and
degenerative conditions(my wife received five of six intended treatments
of the highly neurotoxic chemo cocktails of Taxol and Carboplatin from
March until July of 1997). There appeared to be a real amount of focal
right sided slowing which would indicate cortical dysfunction on that side.
Delayed radiation injuries result in increased tissue pressure from
edema, vascular injury leading to infarction, damage to endothelial
cells and fibrinoid necrosis of small arteries and arterioles(my wife
suffered a stroke to the left basal ganlia area of the brain in January
2000, confirmed by an enhanced MRI).
There are a number of radiation treatments for therapy. The whole brain
radiation treatment my wife received was not the proper treatment for
her. In her case, tumors greater than 2cm in size should be resected(if
possible) and depending on the surgeon's success(her's was 99%) focal
radiation to the local tumor bed is indicated. Her radiation
oncologist's ideas were different from those of the neurosurgeon and
gave her twenty fractions of whole brain radiation to a perfectly good
brain. The radiation oncologist had not told us of any of the
late-delayed reactions that could happen from whole brain radiation.
We originally approached Johns Hopkins for radiotherapy before her
surgical resection, but the tumor was over 3cm(the limit at that time).
But since then I found out from other neurosurgeons that up to 5cm
could have been done.
Aggressive treatment(like surgical resection and focal radiation to the
local tumor bed) in patients with limited or no systemic disease can
yield long-term survival. In such patients, delayed deleterious side
effects of whole brain radiation therapy are particularly tragic. Within
6 months to 2 years patients can develop progressive dementia, ataxia
and urinary incontinence causing severe disability and in some,
death(all symptoms my wife developed).
Even the infamous study performed by Dr. Roy Patchell, et al, in the
early '90's was recognized incorrectly in the radiation oncology
profession. The study was thought to have been the difference between
surgical resection of brain tumor alone, vs. surgical resection & whole
brain radiation. It was not. It was a study of whole brain radiation of
a brain tumor alone, vs. whole brain radiation & surgical resection.
The increased success had been the surgery. And they measured "tumor
recurrance", not "long term survival". Patients experiencing any
survival were dying from Radiation Necrosis(starting within two years of
whole brain radiation treatment) and documented as "complications of
cancer" not "complications of treatment". There was less "tumor
recurrance" but not more "long term survival". In my wife's case, tumors
Patchell's study, conducted over an eight year period at numerous
institutions, was given to only 146 eligible patients. It convincingly
showed that there was no survival benefit or prolonged independence in
patients who received postoperative whole brain radiation therapy. It
never mentioned the incidence of dementia, alopecia, nausea, fatigue or
any other numerous side effects associated with whole brain radiation.
The most interesting part of his study were the patients who lived the
longest. Patients in the observation group who avoided neurologic deaths
had an improvement in survival, justifying the recommendation that whole
brain radiation therapy is not indicated following surgical resection of
a single brain metastasis.
Be mindful, there were other grossly medical negligence done to my
wife, but brain radiation necrosis from whole brain radiation treatment
was the first and largest precipitant to her death. There is the legal
requirement that all doctors must give the patients the information
about informed consent. It is the patient's right to determine what the
patient wants done to their own body. It is not enough for consent for a
patient to merely sign their name or say "yes" to proceed. It needs to
be an "informed" consent which means the patient needs to be told things
like the nature of the treatment, all of the risks and alternatives,
including their risks and non-treatment if that's an option.