Cancer-free: the appalling, shocking news

Not so for Janice Lomen. When doctors finally confirmed she didn't have the cancer she thought would dramatically shorten her life, the Tucson woman felt only shock, deep anger and disbelief.

"I just did not know what to do, what to think," Lomen said of the moment she learned she did not have multiple myeloma, a rare, incurable cancer of the bone marrow that usually kills within three to five years.

Not only did she not have the cancer, but the chemotherapy treatment she had received left her at risk of another disease: leukemia.

"It took me a long time to really realize, to accept what happened. After believing I had this disease for nearly six years, it was, psychologically, 'I'm a cancer patient.' It becomes your life, what you think is left of your life."

Lomen last month was awarded $1 million when a trial jury decided she was wrongly diagnosed with cancer and wrongly treated with toxic chemotherapy by longtime Tucson cancer specialist Dr. Suresh Katakkar.

"For six years, I lived under this death sentence, and I withdrew from life, even from my family," said Lomen, now 64.

"You can't imagine the shock, the anger at finding out this was not true. I cried and cried — I was so hurt. Yes, there was relief, oh definitely. But it's mixed up with so much anger."

To this day, Katakkar insists Lomen has multiple myeloma, and his aggressive treatment has put her in remission and saved her life, his attorney says.

But several experts — including two other Tucson oncologists — say Lomen never had cancer. And all, including Katakkar, agree the chemotherapy drug he gave her for years has put her at significant risk for developing leukemia.

"I thought Dr. Katakkar was the most wonderful healer in the whole world," Lomen said. "I thought he had given me six years of life, and I wasn't dead yet because of him. He was just so compassionate.

"But now … how could he be? What has he done to me? It's very hard to trust anyone now."

A suspicious blood protein

A lifelong athlete who enjoyed tennis, hiking and swimming, Lomen began to pay the price as she entered middle age, when "wear and tear" arthritis started to plague her hips and shoulder.

It was just before hip-replacement surgery, nine years ago, that a routine blood test revealed a suspicious protein.

It was a protein that can signal a couple of conditions. One is a benign condition known as monoclonal gammopathy, that about 3 percent to 5 percent of us have, that never develops into anything significant and does not require treatment.

But if the protein rises to high levels, it can be a sign of multiple myeloma. That happens in about 5 percent to 10 percent of those with the monoclonal protein.

So Lomen was referred to Katakkar — a well-known hematologist/oncologist who has practiced in Tucson for 25 years — to get checked out.

"Right away, on that very first visit, he told me I had this terminal cancer, multiple myeloma. I was so shocked — I didn't even know I had been sent to an oncologist," Lomen said. "But he was very kind that day. When he told me, he came over and hugged me."

Katakkar has testified he based his diagnosis on the presence of the monoclonal protein, and on bone pain and damage, specifically "severe" osteoporosis, or bone-thinning, in Lomen. Bone damage is a classic complication of multiple myeloma.

He soon started Lomen on an expensive osteoporosis drug, which she took during four-hour intravenous infusions every month for 5 1/2 years. Several months later, when her protein levels rose somewhat, he put Lomen on the chemotherapy drug melphalan.

She took melphalan — described in medical literature as a known human carcinogen — for eight months. She went off it for more than two years because of evidence of damage to blood platelets, then went back on it for another 18 months.

During these years, certain she soon would die, Lomen withdrew, physically and emotionally, from her active lifestyle and even from those she loved.

"I didn't do anything. I was very withdrawn. I was tired all the time from the drugs I was taking," she said. "I used to travel, go places and do things with my sister, but no more. It was depressing to see my little grandson. It was hard to play with him. I knew I would never see him grow up."

But what Lomen did not know is that Katakkar failed to perform one of the critical tests for myeloma before diagnosing her, according to experts who reviewed her records, including the Tucson oncologist who took over her care in 2003, when her insurance coverage changed.

That test is a bone marrow biopsy, to determine the level of plasma cells in the marrow. If plasma cells rise above 10 percent, that signals a suspicion of myeloma.

When Katakkar did this test a week later, it showed her plasma levels at less than 1 percent.

"This 55-year-old female fails to demonstrate any proliferation of plasma cells suggestive of myeloma," the pathologist wrote in his report.

"Dr. Katakkar successfully proved that she (Lomen) did not have multiple myeloma" with this test, Lomen's current oncologist, Dr. Richard Rosenberg, testified in his pretrial deposition under questioning by Lomen's attorney, Ron Mercaldo. "So I had to question the accuracy of his diagnosis."

Nor did Lomen have generalized osteoporosis, also a sign of myeloma, Rosenberg testified. When he took over her care, he did a bone-density test for osteoporosis — which Katakkar never did. That test showed no evidence of osteoporosis.

"Janice Lomen did not have multiple myeloma by the criteria that are accepted by the medical profession to establish the diagnosis," Rosenberg testified, citing several other tests that proved negative as well.

When Rosenberg told Lomen the incredible news, she simply didn't believe him.

"I was very angry at him for saying that. I told him, 'How dare you,' " she said. "At the time, I was crushed that I had to leave Dr. Katakkar. I was in tears. I thought he cared so much for me."

Lomen insisted on getting a second opinion, which Rosenberg encouraged. She went to another local oncologist, Dr. Jonathan Schwartz, who confirmed the un-diagnosis: No multiple myeloma.

Rosenberg took Lomen off the chemotherapy and osteoporosis drugs immediately, and she has taken none for three years. She remains stable, showing no progression to multiple myeloma and no osteoporosis, according to Rosenberg.

Even so, Katakkar continues to strongly insist Lomen has this cancer.

"He believes she had multiple myeloma, is in remission from the treatment he gave her, and that his treatment saved her life," said Katakkar's attorney, Thomas Slutes, who advised Katakkar not to comment on the case. "But he expects her to have a relapse. This disease can go undercover for years and then reoccur."

Noting the complexity of diagnosing and treating multiple myeloma, Slutes said some doctors treat conservatively, others aggressively.

"More recent studies show you might want to be a little more aggressive, because once this cancer is full-blown, treatment is not very successful — it's fatal in three to five years.

"Dr. Katakkar and other forward-looking doctors want to nip this disease in the bud," he said. "If you have the (protein) spike that she did and evidence of end-organ disease — the osteoporosis — then you start treatment. He wanted to stop it before it got to the point where it was incurable."

However, in a letter Katakkar sent to Rosenberg after she switched doctors, Katakkar denied ever giving Lomen any chemotherapy drug despite extensive documentation in her medical records that he did.

A myeloma expert backed up Katakkar's decision to treat Lomen with the drugs he used, including melphalan.

"I could not find enough criteria for a diagnosis of multiple myeloma, but certainly there was some concern that the disease was evolving," Dr. Ruben Niesvizky, a Mexico-trained physician who is director of myeloma service at Weill Cornell Medical Center in New York, testified in a pretrial deposition.

By now, Lomen has recovered from the chronic fatigue, but is still trying to pick up where she left off nine years ago.

"It's taking a little while to re-enter life. I'm in therapy, trying to learn how to express my feelings about this," she said.

But she must be tested every three months for leukemia. At the total dosage of chemotherapy she received, she faces a 20 to 25 percent chance of developing that disease, studies show.

"I'm very afraid — that something's going to happen because of that drug," she said. "I just have to live with that, for the rest of my life."

But what she wants most is to warn people to "always, always" seek a second, even a third opinion for a devastating diagnosis such as cancer.

"Never accept the first opinion no matter how highly esteemed the doctor is, or how much you like him.

"A simple second opinion — think how much that would have meant."

On StarNet Find recent articles and webcasts on research at go.azstarnet. com/cancer

● It is a rare, incurable, highly fatal cancer of the plasma cells in the bone marrow.

● It will strike 16,570 Americans this year and kill 11,312.

● It has a median survival of three to five years, with only 3 percent surviving 10 years.

● Symptoms include bone pain, fatigue, weight loss, repeated infections, loss of appetite, excessive thirst and urination, nausea, constipation, weakness or numbness in legs, unexplained bone fractures.

Sources: Mayo Clinic, American Cancer Society