Cancer Medicine's Dark Corners

In the Spring of 1997, we let a gynecologic oncologist at our home town hospital convince us that Ann needed Chemotherapy. It was the hit fast, hit hard type of therapy 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 like disease by blocking their passage from the blood). The group of drugs called nitrosoureas like Cisplatin, Cisplatinum or Carboplatin are such drugs and natural substances such as Taxol, also cross the barrier. Necrotizing Leukoencephalopathy is the form of diffuse white matter injury that follows chemotherapy. 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. It was our family doctor that found her second metastatic occurrance to her cerebellum in 1998(not the oncologists at our home town hospital). During the eight years Ann was seeing the oncologists at our home town hospital, just what were they doing? One noticable procedure they 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 when we found out that Ann had a 3.5cm tumor(via unhanced MRI), I called the office of our 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 chemo-therapy". I was speechless! Our family doctor's office managed to get an appointment with neuro-surgeon at our home town hospital. It wasn't for four weeks. A diagnostic radiologist at our 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 resected from Ann's brain the following Friday, July 17, 1998 by a neuro-surgeon. Histologic features were consistent with metastatic papillary adenocarcinoma with extensive necrosis from the ovary. The surgery was a remarkable success. Ann was discharge on July 22, 1998 with instructions to go to back to our home town hospital and receive radiation therapy 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 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(inclusive dates of radiation were July 29, 1998 through September 1, 1998). Whole Brain Radiation induces neurological deterioration, dementia or both. Patients develop progressive dementia, ataxia and urinary incontinence after Whole Brain Radiation. Local radiation to the 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 Unenhanced MRI to the spine that showed a 1cm lesion. Instead of performing an Enhanced MRI to the spine to further evaluate, our 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 is Gadolinium. The proper medical protocol for all Metastatic Brain and Spinal MRI's for metastatic diseases 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, Ann was admitted to our home town hospital during the Memorial Day Weekend of 1999, for a week of testing and evaluation for unexplained falls and light-headiness. 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) or the brain. It occurs when the white matter is irratiated 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, they finally repaired her hip by an orthropedic surgeon. 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 home town hospital by ambulance and took her to a leading cancer hospital in Hershey for proper medical treatment on Saturday, June 19, 1999.

At that hospital we found out by a medical onocologist that not only Ann had Adenocarcinoma nodules in the spinal fluid but also Leptomeningeal Carcinomatous(remember the undiagnose tumor of nine months prior, not further evaluated?). An Enhanced MRI showed now three (3) 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 adenocarcinoma nodules in the spinal fluid). Our home town hospital doctors 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 showed me the Enhanced Brain MRI from the previous year's cerebellum resection and the one done presently. The scans showed the progressive deteriation of her white matter(white matter disease). Late delayed effects, occuring 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 Radiation Necrosis, brought on by Whole Brain Radiation and Taxol(chemo-therapy received with Carboplatin in the Spring of 1997), weren't enough, she was subjected to improper medical protocal for Brain and Spinal MRI's for metastatic diseases(Unehanced instead of Enchanced-Contrast), which left an undiagnosed tumor on her spine in 1998. While admitted to our 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 mets. 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 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 systemic radiation to the spine(Admitted June 19,1999) When both therapies are performed at the same time it doubles the theraputic 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 home town hospital's rehabilitation unit after she was reclassified(under medicare) as an Outpatient(July 3, 1999). We had no other place to go.

The radiation oncologist our 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!" I stopped the radiation treatments at 15.

On the last day of Ann's spinal radiation treatments(July 15, 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 home town hospital, on a follow-up appointment after hospital release(Thursday, August 5, 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 home town hospital, on another follow-up appointment after hospital release(Thursday, August 26, 1999), to withdraw spinal fluid samples from her reservoir, wanted to give Ann another dose of methotrexate, without doing any prior blood work. I did not allow it. Since the second methotrexate treatment at Hershey, all her spinal taps were Negative.

Ann EEG performed in December 1999, enhanced MRI's performed in January 2000 and May 2000 and a Pet Scan performed in August 2000, all showed even more diffuse white-matter injury(Radiation Necrosis).

A recurrence of the cerebral metastasis was very likely to happen in the future. It did, observed via that Enhanced MRI of May 200 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 course of success. She received successful Gamma-Knife treatment at leading cancer hospital in Baltimore, Md. on September 12, 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 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 a result of Whole Brain irradiation and Chemotherapy.

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 fullfil your cancer treatment needs. Until Ann Pawelski met the infamous cancer doctors at our home town hospital, she was a twenty-four year survivor before her first Ovarian recurrance. 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.

Ann's attitude about fighting cancer was 90% Faith and the Will to Live and 10% the Art (not the science) of Medicine. Look up in any dictionary for the word "Hero" and there is a picture of Ann.