Confusion compounds pain of cancer

August 02, 1994|By ELISE T. CHISOLM

She is 54, not young, not old. Her yearly mammogram showed a small lump. "Highly suspicious," said the radiologist. The doctor recommended a biopsy. She knew then her life could change forever.

I'll call her Ella. She is one of my closest and dearest friends. She lives in the nation's capital.

The part of her tedious journey from breast cancer discovery to recovery over a three-year period that most frightened me and frustrated her were the terrible decisions she had to make on her own and the controversy surrounding various procedures.

Used to be doctors seemed to know what to do right away. Not so with the epidemic called breast cancer.

And it is epidemic. Latest statistics are that one out of nine women will develop it.

Ella is widowed and didn't have a husband with whom to discuss the news or to stand by her.

I told her to get a second opinion. She went to another radiology firm, and he looked at her X-rays and said, "Yes, it should be aspirated, biopsied, but it is very small. If it is malignant, you will only have to have the tumor excised and no lymph nodes removed."

She was so relieved.

However, before the biopsy, she went to the library and read several of the latest books on breast cancer. A super-intelligent woman, she wanted to know all she could, as there are different technologies and many types and stages of breast cancers.

She found out the plethora of information from doctors, hospitals and even different states was unsettling.

Riding an emotional roller coaster, she then decided to enter the hospital, where she obtained the first mammogram reading. Her biopsy was done by a resident doctor in the large hospital. She developed a hematoma in the area of the biopsy, so it would be six weeks before they could remove the tumor.

Strike one for incompetence.

She entered the hospital again and was given the choice of a mastectomy or lumpectomy followed by radiation. She had a lumpectomy. They removed 18 nodes. She had a 1.1 centimeter tumor.

But she still wonders if she needed the nodes removed, remembering the second doctor's opinion. Her arm is sore still, and she can't lift it. She is angry.

Two months ago, she had another scare and an incorrect mammogram reading. But it turned out to be a misdiagnosis.

Strike two for differences in diagnosis.

Ella is doing well now, but again, doctors are disagreeing on whether she should be given the controversial hormonal therapy drug tamoxifen for breast cancer treatment.

Strike three for indecision.

But she didn't strike out. Her prognosis is excellent.

She questions why, in a big city with fine medical facilities, there would be such diverse treatments.

Having read Joyce Wadler's very honest book "My Breast," I knew Ella's case is just one of many. For all women, there seems to be a yo-yo agenda out there for treating breast cancer.

I found the afterword, written by author and surgeon Dr. Susan M. Love, the most informative part of the book.

The truth is the patient has to take her own body into her own care and look out for conflicting medical pathways to wellness.

But what we really need is not more books, not more television shows, but action. More research money for immediate testing. As Dr. Love says in Wadler's book, "The sad fact is we don't know why women get breast cancer . . . it would be ideal if we had a blood test or scan that could tell us if any breast-cancer cells had escaped the immune system and were lodged in some other organ. Unfortunately we don't."

Both men and women have to get angrier and should be activists and demanding consumers in the war against this disease. And that goal, once attained, would be a home run for all of us.

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