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Whole Brain Radiation

gdpawel's picture
Posts: 525
Joined: May 2001

Radiation Therapy Side Effects

The side effects of Radiation Therapy can be classified as Acute, Subacute
and Delayed.

Acute reactions occur during the course of treatment and are temporary.
They are manifested as signs of increased inter-cranal pressure or
worsening of neurological deficits. They results from an increase in cerebral
edema(abnormal accumulation of fluid). The administration of
corticosteroids usually decreases or alleviates symptoms. Steroids are
generally administered during the course of therapy to prevent this
occurrence. Other acute reactions are nausea, vomiting, anorexia(loss of
apetite), fatigue, alopecia(loss of hair) and skin irritation.

Subacute reactions generally develop one to three months after completion
of therapy. These are temporary in nature. Symptoms include anorexia(loss
of apetite), sleepiness, lethargy(drowsiness) and an increase in neurological
deficits. These effects result from the temporary disruption of myelin
formation, which helps speed the relay of nerve signals. It takes
approximately six weeks for myelin to repair.

Delayed reactions usally occur 6-24 months after completion of therapy.
These effects are irreversible and often progressive. They result from direct
injury to brain tissue and blood vessels. These reactions are due to changes
in the white matter and death of brain tissue caused by radiation-damaged
blood vessels. Symptoms vary from mild to severe decreased intellect,
memory impairment, confusion, personality changes and alteration of the
normal function of the area irradiated. Leukoencephalopathy(degeneration
of the white matter) occurs at the tumor site and surrounding irradiated brain.
The clinical manifestations range from mild cognitive neurological
impairment to dementia to death. Those at increased risk for long-term
radiation effects are children less than 2 and adults over 50 years of age.
Long-term effects can be initially managed to some degree with
corticosteroids and surgery to remove necrotic tissue. Other long-term
reactions include loss of vision, development of secondary
malignancies(oncogenesis) and pituitary-hypothalamic dysfunction(changes
in normal hormone levels)leading to problems with your thyroid, sugar
metabolism, fertility or ability to process water.


gdpawel's picture
Posts: 525
Joined: May 2001

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(the Pennsylvania State Board of Medicine and the Department of Health are presently investigating my wife's situation). 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.

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 negligences 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.

We were never informed by any doctor involved with my wife's chemotherapies or radiation therapies about the possible late-delayed side effects of treatment, nor the alternatives to treatment. Ann and I were corraled into believing this was the only thing to do, no other choice and no mention of the late side effects of treatment.

Because of this the State Board of Medicine, and now the Department of Health, began its investigation of my wife's death. I am a spouse who saw his soul-mate being slowly tortured to death because of what he did not know before, but who has spent two years of sleepless nights finding out what the oncologists didn't tell us and what insidious side effects they incurred on my wife with their negligent practice. I never realized a patient had to be just as knowledgeable or even more knowledgeable than the oncologists that treat these patients. Not having the knowledge before hand resulted in the death of my wife. I'm very sorry to her for letting that happen. She really wanted to live, with me.

I just have to see how the system will fight for my wife and the many others who have died, likewise, though I was cautioned by a friend to suspect that it is rare for them(the system) to actually conclude by taking substantial action.

Posts: 1
Joined: Mar 2003

I too, know a little of what you are feeling.

In March of 2001, my 46-year old husband, went to our family physician, after experiencing slight numbness on his right arm when exercising, followed by a metallic taste in his mouth. Our physician ordered an MRI, which indicated a brain tumor.
When we were told of the results, I can’t explain the interior pain. After making sounds I never knew could come from my body, our Dr. told me he had not seen my husband’s film, but from speaking with the radiologist, indications were of a contained tumor, maybe cancer, and would probably require chemo and some targeted radiation.

He looked me in the eyes, and said, "I do not think this a life threatening situation."

We immediately went to retrieve his films from the imaging facility, and then to the hospital. Without any further tests, a Dr. came in and said it was more than likely cancer. She also said it was cancer that starts from another source, and probably came from his lungs, since he used to smoke. She went into a detailed account of how her father-in-law had died of the same disease, and it was if a brick wall had hit us. This had all happened within four hours!

The story, which ensues, is more like science-fiction than reality, but a biopsy was done, and the surgeon came out and said it did not look bad, he didn’t even think he saw cancer, but to wait for the pathology test.

We waited five days, and the pathology test came back to show that he did have the spreading cancer, originating from another source.

We immediately started the process to get into hospitals specializing in cancer, which is not an easy task, due to an insurance maze. In the meantime, his physicians said he needed whole brain radiation immediately.

Of course, when you are left in the dark with no where to turn, you go towards whatever light is offered. He went through a full course of whole brain radiation and extremely intrusive, (some surgical), tests to find the source, to no avail.

Finally, we were able to take advantage of the admission date of a cancer clinic, in the latter part of May.

For two weeks, he underwent the same obtrusive test he endured previously, the hospital determined his results didn’t make sense. Finally, looking at the original films, specialists decided it was a very pronounced and contained brain tumor.

Another brain biopsy was recommended. The surgeon came out, and said the cells they harvested couldn’t even co-exist with the ones sent them from the originating hospital. The surgeon then said I should seek legal counsel.

Another Dr. I spoke to, at that facility, also said I should seek legal counsel.

We flew home, and I went to our family physician, who said I should seek legal counsel. He even gave me the name of an attorney to contact.

We eventually found out through "word of mouth" from various doctors, that the original diagnosis was based on a biopsy of a woman’s cancerous breast tissue.

We have yet to be contacted by the hospital, KUMC, although when contacted by our attorney, they actually said they were awaiting our call.

We are now faced with on-going litigation, and looking at "Intentional Concealment" from our most trusted physicians. We are quite confused about the absence of information and accountability of the medical community.

I most recently found out that most states do not have any medical accountability for public or legal access to mistakes. This means that even our attorney cannot find out if KUMC has rectified their "problem" to use as an instrument in out lawsuit.

I don't think the White House has this kind of protection.

Basically, I feel we have been thrown into a "Medical Mafia."

Again, I am so incredibly sorry for your loss, but if you have the energy, we would welcome you to join us as an advocate for the cause of public information to the accountability of medical mistakes.

There is no current way that we can find out if KUMC has made similar pathology or any other repeated mistakes, which is literally crazy.

There is no national record of doctors who make repeated mistakes. In essence, a doctor could have amputated the wrong leg hundreds of times, and no one would know.

When KUMC told us that Kevin had cancer which they though was literally all over his body, and that whole brain radiation was his only hope for continued life for a few months, we marched like little brainless mice for the treatment.

It took us two months to get to a hospital which knew what they were doing, and people need to know that.

We can sincerely feel for your loss, and pray for your future.

Kevin and Michele Kelley

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