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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 findings.

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 recurred.

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.



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