Contributed by a care-giver, Mr Gregory D. Pawelski living in USA.
Cancer Medicine's Dark Corners
My wife, Ann Pawelski had been seen by our local home town oncologists since 1990 because of previous cancers in 1972 (Ovarian) and 1984 (Rectal). She had no problems with her previous diseases because of the fine medical help she received at a leading cancer hospital in San Diego, CA. During the 90's she underwent a laparotomy(a surgical
procedure which involves opening the abdominal cavity for examination) as a follow-up and this did not reveal any evidence of recurrent carcinoma. This is the most certain way of diagnosing ovarian cancer and assessing the extent of cancer spread(metastasis). However, it was our family doctor that found her first metastatic occurrence to her diaphragm in 1996 (not the oncologists at our local home town hospital). That cancer was surgically excised at a leading cancer hospital in Philadelphia, PA. It was a metastatic transdiaphragmatic tumor from the original primary tumor (1972), with attachment to the lung and other midline structures of the chest. The Thoracic Surgical Oncologist stated that she was 100% successful and felt Ann did not need any treatment with chemotherapy.
She left us with the knowledge that the second place that an ovarian metastasis possibly could occur may be the Central Nervous System (CNS) like the brain and/or the spine. It is very rare for ovarian cancer cells to metastasize to the CNS. In fact, up until 1994 there have been only 67 well documented cases in medical 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%. Metastasis of ovarian cancer cells to the Central Nervous System is uncommon and was rarely seen before the use of present day chemotherapy regimens.
In the Spring of 1997, we let a Gynecologic Oncologist at our local home town hospital convinced us that Ann needed postoperative chemotherapy (seven months after having that metastatic tumor resected). She did not have any cancer tumor markers indicate any cancer within her system (she did not have any cancer). Some tumors send out microscopic outposts while others do not. However, oncologists cannot tell which ones do, so they give chemotherapy in nearly every case. It was the hit fast, hit hard type Cocktail Chemotherapy of Taxol and Carboplatin. Chemotherapy affects both normal and tumor cells. The effect on normal cells is the cause of side effects from chemotherapy.
Some chemotherapy drugs do permeate (pass through) the blood brain barrier (the system that protects the brain from foreign substances by blocking their passage from the blood). A group of platinum based drugs like Cisplatin, Cisplatinum or Carboplatin are such drugs and natural substances such as Taxol, also cross the barrier. She developed
necrotizing leukoencephalopathy (a form of diffuse white matter injury that can follow this chemotherapy), confirmed by an enhanced MRI in July 1998. The white matter is the covering of the nerves within the brain. Its function is to speed up the passage of impulses along the nerves. Necrosis is simply a cell dying, all of its coordinated activities going wrong and things shut down. If a cell gets too much heat, or is poisoned by a toxic substance, or is exposed to chemicals that damage its proteins and membranes or radiation that break its DNA molecules, that cell can just stop functioning. Ann almost didn't make it through. She could only receive five of the six intended treatments. We met many other patients that didn't make it (they died of treatment).
Unfortunately, some chemotherapeutic agents weaken the blood-brain barrier (BBB) transiently and allow CNS seeding. In essence, it breaks down, damages the blood-brain barrier to invite cancer cells into the Central Nervous System. In recent years the incidence of CNS metastasis has increased. A NCI study in 1995 reported experience in their clinic where recurrent systemic disease occurred in all patients for which they received dose intense Paclitaxel (Taxol) therapy. Brain metastasis was the only site of disease recurrence. The cerebellum was involved in two out of three patients, presenting with headache, dizziness, unsteady gait, nausea and vomiting (all symptoms and results my wife experienced).
It was our family doctor that found her second metastatic reccurrence to her cerebellum in 1998 (not the oncologists at our local home town hospital). During the eight years Ann was seeing these oncologists, just what were they doing? One noticable procedure that this oncological group had with seeing their patients was that the patient got to see a
different oncologist on each visit to the office (musical doctors like musical chairs?). I never understood why!
In July 1998 a large (3.5cm) solitary cerebellar brain tumor was found via enhanced Cat Scan (later confirmed by an enhanced MRI). I called the office of our local home town oncologists to tell them Ann had a tumor in her cerebellum. The office said,"what do you want us to to about it"? I said,"excuse me, you are oncologists"! They said,"we are not that kind of oncologists, we are involved with giving patients chemotherapy" (Medical Oncologists). I was speechless! It was a rude awakening that she should have been seen during the 1990's by a Gynecologic Oncologist at a leading cancer center (and not at our local home town hospital). Our family doctor's office managed to get an appointment with neurosurgeon at our local home town hospital. It wasn't for four weeks. A diagnostic radiologist at our local home town hospital that performed an angiogram on Ann (to see how her vascular system was in her brain) told us that the tumor looked to be a very fast grower and to do something about it as soon as possible. With Ann's appointment not for four weeks, I contacted a leading cancer hospital in Hershey, PA.
The tumor was excised from Ann's brain the following Friday, July 17, 1998 by a neurosurgeon. Histologic features were consistent with metastatic papillary adenocarcinoma from the ovary with extensive necrosis. Necrosis means dead. Necrotic tissue means dead tissue. Tumors are not dead, they are uncontrolled cell growth and rapid reproduction. Imaging features of necrotizing leukoencephalopathy include
periventricular white matter hypodensity on Cat Scan and hypo/hyperintensity on T1/T2 weighted MRI. Five days later, Ann was discharged on 22 July 1998. The neurosurgeon stated that he was 99% successful and felt that she should go back home to our local hospital and receive focal radiation to the local tumor bed. At the same time, she should receive an MRI of the spine because of suspicions of either another tumor, on her spine or a herniated disc, causing her leg problems.
Because we were left with no script, instructions or referral, the radiation oncologist at our local home town hospital took it upon himself to give Ann 5 fractions (at 2.0gy per) of focal radiation to the local tumor bed, PLUS 20 fractions (at 2.0gy per) of Whole Brain
Radiation over a 35 day period (July 29, 1998 through September 1, 1998). The risk of neurotoxicity from Whole Brain Radiation is not insignificant and this approach is not indicated in all patients with a solitary brain metastases. Observation or focal radiation is a better choice in patients with solitary metastasis. Whole Brain Radiation induces neurological deterioration, dementia or both in some patients. Patients can develop progressive dementia, ataxia and urinary incontinence after Whole Brain Radiation. In addition, Whole Brain Radiation Therapy has been recognized to cause considerable permanent side effects mainly in patients over 60 years of age(my wife was 66
years of age). The side effects from Whole Brain Radiation Therapy affect up to 90% of patients in this age group. Focal radiation to the local tumor bed has been applied to patients to avoid these complications. The treatment method recommended for brain metastases of large solitary tumors exceeding 2cm in diameter is surgical resection followed by 5 fractions of local radiation to the tumor bed.
During radiation treatment, Ann received an un-enhanced MRI to the spine that showed a 1cm lesion. Instead of performing an Enhanced MRI to the spine to further evaluate, our local home town hospital performed a Bone Scan that showed normal bone imaging. Enhanced (contrast) agents increase the sensitivity, conspicuity and accuracy of an exam. The agent most commonly used for contrast during MRI is Gadolinium. The proper
medical protocol for all Metastatic Brain and Spinal MRI's for metastatic cancer is Enhanced (contrast). An Enhanced MRI was not performed. The radiation oncologist told us the lesion was nothing and not to worry about it. He also ignored my complaints about Ann having seizures during radiation therapy.
Nine months later, during the Memorial Day Weekend of 1999, Ann was admitted to our local home town hospital, for a week of testing and evaluation for unexplained falls and light-headedness. The medical oncologist who admitted Ann said that Ann was supposed to be seen by an Internist (for her blood pressure) and a Neurologist (for a spinal tap).
At the end of that week, another medical oncologist (remember musical doctors?) calls me on Friday, June 4, 1999 to tell me Ann DID NOT HAVE CANCER and he'll let her go home the next day. They diagnosed Ann with Leukoencephalopathy, a type of early delayed reaction affecting the white matter (connective tissue) of the brain. It occurs when the white matter is irritated by Radiation, dead tumor cells, and/or Chemotherapy.
Ann went home the next day in time to fall and break her hip in four places.
After waiting two days to be operated on, an orthopedic surgeon finally repaired her hip. After surgery, when physical therapy was to be performed immediately, Ann did not become coherent, she was lethargic (undiagnosed leptomeningeal carcinomatous in patients receiving anesthesia has resulted in some documented brain death). For two days, I tried to track down the neurologist who was supposed to do the spinal tap the week before. When I found him to ask about the previous week's spinal tap, he told me he DID NOT PERFORM A SPINAL TAP on Ann. I asked him why not, he said, "after he and a medical oncologist had a little chat, decided not to give it to her; he had seen this many times before, no need to do a spinal tap". I forced him to perform a spinal tap on Ann, then and there. Afterwards, tests results showed adenocarcinoma nodules in the spinal fluid (still, no one knew why!). After the Pathologist did not want to sign off on his diagnosis, I yanked Ann out of our local home town hospital by ambulance and took her to a leading cancer hospital in Hershey, PA for proper medical treatment on Saturday,
19 June 1999.
At that hospital we found out from a medical onocologist that Ann had Leptomeningeal Carcinomatous (remember the undiagnosed tumor of nine months prior, not further evaluated?). An Enhanced MRI showed now three metastatic tumors on her spine. Spinal metastases can grow into adjacent structures, such as into the meninges from the spine. The largest of these tumors grew into the meninges on the spine into the spinal fluid,
hence Leptomeningeal Carcinomatous. Our local home town hospital oncologists FAILED TO DIAGNOSE CANCER in Ann.
The first time I came across the idea of Radiation Necrosis was at this time. The doctors at this leading cancer hospital in Hershey, PA showed me the Enhanced Brain MRI from the previous year's cerebellum resection and the one done presently. The scans showed the progressive deterioration of her white matter (white matter disease). Late delayed effects, occurring several months to many years later, are classified into diffuse white-matter injury, radiation- induced arteriopathy & stroke, and late delayed Radiation Necrosis. These reactions are due to changes in the white matter and death of brain tissue caused by Radiation-damaged blood vessels. Late delayed Radiation Necrosis is often irreversible and progressive, leading to severe disability or death! Radiation Necrosis
is part of a series of clinical syndromes related to central nervous system complications of radiation. It generally occurs 6 months to 2 years after radiation therapy. Symptoms include decreased intellect, memory impairment, confusion, personality changes and alteration of the normal function of the area irradiated (all symptoms Ann had over the
past year). Radiation Necrosis can be fatal! It causes pathological changes that impair vascular integrity. It causes cerebral infarctions (strokes). Ann suffered a stroke to the left basal ganlia area around the New Year 2000.
As if Ann's complications with Brain Necrosis, brought on by Whole Brain Radiation and Cocktail Chemotherapy of Taxol & Carboplatin in the Spring of 1997 weren't enough, she was subjected to improper medical protocol for Brain and Spinal MRI's for metastatic diseases (Un-enhanced instead of Enhanced- Contrast), which left an undiagnosed tumor on her spine in 1998. While admitted to our local home town hospital in June 1999 for
testing and evaluation for unexplained falls and light-headiness, the doctors there, failed to perform a Spinal Tap or/and Enhanced MRI and failed to diagnose three spinal metastases. They let her go home to fall and break her hip in four places (the mortality rate for those over 60 years of age for large broken bones is 25%).
With the damage already done to her at our local home town hospital, the doctors at that leading cancer hospital (in order to save her life or at least give her some time) had to administer Intrathecal Methotrexate along with radiation to the spine (Admitted on 19 June 1999). When both therapies are performed at the same time it doubles the therapeutic dosages of each therapy (increasing the neuro-toxic effects on the
brain). The medical oncologist began two treatments of Intrathecal Methotrexate. A radiation oncologist began performing seven fractions (at 2.0gy per) of radiation to the spine. Ann was transferred from there to our local home town hospital's rehabilitation unit after she was reclassified (under medi-care) as an Outpatient (3 July 1999). We had no other place to go!
The radiation oncologist at our local home town hospital finished the next eight radiation treatments. After he was explicitly told that Ann needed only a total of 15 fractions (at 2.0gy per) of radiation to the spine, he wanted to give her 5 more fractions, AT A HIGHER DOSE! I asked him,"why?" He said,"we do things a little differently here, we are a lot more aggressive!" This gave me an indication as to why he gave Ann Whole
Brain Radiation in addition to 5 fractions of focal radiation the previous year (1998). I stopped the radiation treatments at 15.
On the last day of Ann's spinal radiation treatments (15 July 1999), another medical oncologist gave Ann her fourth and final methotrexate treatment. He said her white blood cell count was not up enough, yet gave her the methotrexate treatment anyway.
I asked a medical oncologist at our local home town hospital on a follow-up appointment after hospital release (Thursday, 5 August 1999), "why Ann didn't receive the Spinal Tap that she said Ann was supposed to receive"? She said, "I don't know?" I asked her, "why did your associate tell me Ann did not have cancer"? She said, "I don't know?"
Another medical oncologist at our local home town hospital, wanted to give Ann another dose of methotrexate without doing any prior blood work during another follow-up appointment to withdraw spinal fluid samples from her reservoir after hospital release (Thursday, 26 August 1999). I did not allow it.
Ever since the second spinal tap at the Hershey hospital(when methotrexate was already being administered), all of her spinal taps were negative for 10 consecutive times up until January of 2000. A Whole Body Bone Scan(3 November 1999) indicated that the skeletal system demonstrated normal uptake and an Enhanced Brain MRI(3 November 1999) showed no new areas of abnormal enhancement. Leptomeningeal Carcinomatous has a very poor prognosis, however the cancer cells were eradicated completely from her central nervous system by the methotrexate.
An EEG performed at that leading cancer hospital in Hershey in December 1999. MRI's performed in November 1999, January 2000 and May 2000 at that hospital and a PET Scan performed at a leading cancer hospital in Philadelphia, PA in August 2000, all showed even more diffuse white-matter injury (Radiation Necrosis). Her additional twenty fractions of Whole Brain Radiation resulted in diffuse necrotic effects.
The EEG showed generalized diffuse slowing that was significant with global encephalopathy. It is most commonly seen in toxic metabolic and degenerative conditions. There appeared to be a real amount of focal right sided slowing which would indicate cortical dysfunction on that side.
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. The PET Scan showed globally decreased radiotracer uptake within the brain, bilaterally, consistent with involutional change and prior radiation therapy. 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.
A recurrence of the cerebral metastasis was very likely to happen in the future. It did, observed via that Enhanced MRI of May 2000 and that PET Scan of August 2000. Four, mm-sized metastatic tumors were found in and around the previously resected cerebeller tumor and because of Ann's weakened condition, Gamma-Knife would be the only best medical protocol.
She received Gamma-Knife treatment at a leading cancer hospital in Baltimore, MD on 12 September 2000. During the whole time of her admission at the hospital, the doctors kept referring to her continued diffuse white-matter injury (Radiation Necrosis), as if she may be too far advanced in that injury to survive much longer. Ann (Lory) Pawelski
died Thursday, September 21, 2000 at the age of 68 from Cardio-Pulmonary Failure. Minutes before she expired, her temperature was normal, her blood pressure was normal but her pulse was 150 (tachycardia). Her heart was racing to keep up with the lack of brain function and finally quit.
The white matter disease that Ann experienced and caused her death was primarily a result of Whole Brain Radiation and secondary a result of Cocktail Chemotherapy of Taxol & Carboplatin (Methotrexate was icing on the cake). The Cocktail Chemotherapy of Taxol & Carboplatin caused ovarian cancer cells to seed inside the CNS to form a tumor on the cerebellum and tumors on the spinal cord. The Whole Brain Radiation
resulted in the death of tumor cells and associated reaction in surrounding normal brain. Such reactions tend to occur more frequently in larger metastatic lesions. Believe me, a slow, arduous, neurological death is not preferable to a cancerous one.
Hence the saying, "cancer medicine has been driven by external forces into dark corners, such as what amounts to generating more of an advertisement sent directly to a patient, than patient information and more disturbingly on TV and other media". There's this multi-billion dollar cottage industry called chemo-radiation therapy just waiting for
an excuse to fulfill your cancer treatment needs. Until Ann Pawelski met the infamous cancer doctors at our local home town hospital, she was a twenty-four year survivor before her first Ovarian recurrence. Some patients can live 10 years with recurrent Ovarian cancer. Ann had enough of a fight with a chronic disease without having to be subjected to inept oncologists.
I've spent two years with many a sleepless night researching what really happened to
my wife and how she was killed. Death by "side effects of treatment" is not the same as "complications of cancer". A lot of cancer patients who succumb to their disease get the wrong information on their death certificates. They die with incorrect, incomplete or misleading diagnosis. Often it will say they died of heart failure, kidney failure,
liver failure or lung failure. These can be side effects of cancer treatment as well as the progression of cancer. They are lumped together reducing the general understanding of the impact of cancer. We need to reinvent the death certificate, rewritten with more information to include things like death from side effects of treatment, death from advanced age, etc. so we can figure out trends and what contributed to the death.
The sad idea I found out over my two years of research was that cancer patients do die from chemo-radiation treatments. The very sad idea I found out that this is the "norm", a common occurrence. I just can't believe this and refuse to accept this adage. Yes, I'm bitter and angered, so was my dear wife. She wanted me to put my anger and bitterness into constructive research, education and exposure of the conventional way patients are being treated for cancer. So much conventional cancer treatments have been available for such a very short period of time that it has not yet been determined all of the truly long term side effects and how often, of some of these treatments.
If we had to do it all over again...
During the 1990's, Ann should have been regularly seen by a gynecologic oncologist at a leading cancer center(like Fox Chase, University of Pennsylvania, Johns-Hopkins, Sloan-Kettering, etc.) and not medical oncologists at our local home town hospital.
The thoracic surgical oncologist at Fox Chase told us she was 100% successful with the surgery after excising her ovarian metastasis from her diaphragm, and that my wife did not need any chemo or radiation. We allowed a gynecologic oncologist at our local home town hospital corral us into receiving the deadly cocktail chemotherapy of Taxol and
Carboplatin. The studies on the side effects of it are very, very hard to find and most oncologists (particularly medical oncologists) never touch upon the serious side effects (just the garden variety type only).
Ovarian metastasis to the brain was so rare, it was virtually unheard of until the advent of the blood-brain barrier permeating chemotherapeutic drugs of the 90's. As Lung and Breast cancer patients may also receive this cocktail chemotherapy (and brain metastasis is a more common occurrence), think how much of an increase in brain metastasis to these patients are happening.
Of course, I am thoroughly convinced if she did not have the cocktail type chemotherapy, she would never have had the brain tumor. But since she did have a metastatic brain tumor, she never should have had whole brain radiation after the surgery. It should have been observation only(where Enhanced MRI's, Functional MRI's and Pet Scans have made it more detectable and easier) or at the worst, focal radiation to the local tumor bed. I found out (from the horses mouth himself) the radiation oncologist from our local home town hospital utilizes VERY aggressive treatment protocols (to the detriment of his cancer patients). The Pennsylvania State Board of Medicine and the Department
of Health are both investigating this doctor and a few of the other doctors and this hospital.
The best advice I received after our family doctor found out Ann had her first metastatic recurrence was from my doctor-brother's wife. She said to me, "get out of town". I said, "excuse me". She said again, "get out of town. Go to a real cancer hospital for your treatment with cancer." We did just that. We went to Fox Chase Cancer Center. However, we came back to our local home town hospital and got caught in their old-tech or no-tech practice of cancer medicine. I am so sorry to my wife for bringing her back to our local home town hospital to treat a serious disease. I am paying for it with the loss of her life. She never let go until she breathed her last breath. She wanted to be here with me. We
were soul mates and best friends, different sides of the same coin. Now the one side of that coin is gone. What is left is fighting for her honor. She DID NOT DIE OF CANCER! She died of the TREATMENT of it. She beat it!