Last week, during our first day of  lounging on the warm sands of Myrtle Beach, my oldest son asked me why I hadn’t been in the ocean yet, knowing that usually I am the first one in. Even the coldest North Shore waters of Gloucester in June are not enough to stop me. I generally feel that if you are going to take the trouble to travel to the beach you HAVE to go in the water.  Otherwise you might as well stay in your backyard on a lounge chair.

“I’m not hot enough yet,” I said.

On the second day, he asked me again.

“What’s wrong with you?  Why aren’t you going into the water?” he said, shaking his wet head at me like a dog.

“Knock it off,” I said fending off his watery attack with my raised hand, “I just don’t feel like it.”

“Why?”

“Jelly Fish.” I said,thinking about how every other year when I took my morning run along the beach I would see their gelatinous bodies washed up on the shore every few feet knowing how much pain these beautiful creatures could inflict, their long sinewy tentacles poised for attack.

“Mom, I haven’t seen any Jelly Fish on the beach this year.”

“I know, neither have I,” I said, “But that doesn’t mean they aren’t IN the water.”

“So you mean to tell me,” he said, with all his 16-year-old wisdom, “That you are going to base your decision on  fear of what may be in the water?  Of what might be?”

“I guess so,” I said, and went back to reading my book.

I did eventually go in the water a few times over the week, but I didn’t linger–in and out– but I went in.  But Calvin’s words stuck with me, because isn’t  that what I have been doing over the past few years? Living my life in fear of what might happen?  My cancer is like those jelly fish.  A few years ago we saw it all with our eyes, the tumors ,the tests the results, as clear as those masses washed up on the sand. But now those masses are gone, there is no physical evidence anymore.  The cancer is gone.  But is it really?  It could easily be swimming in the currents of my blood stream, waiting to sting me again, translucent and beautiful, its tentacles trying desperately to spread out. Because of this possibility, of what might be,  I take a drug everyday, Tamoxifen, that I hate, that makes me fat and puts me into menopause and causes joint pain and can lead to uterine cancer– but I take it, just in case.

But these decisions on what medicine to take and how long to take them are also based on scientific tests, so they must be right. Right?  The decision to take medicine is not only based on what might be it is backed up by numbers and percentages and facts.  So I know that if I don’t take the Tamoxifen then there is a 40% increase in the likelihood of my cancer returning, and  I base my decision on that.  It’s  also the reason I agreed to taking Herceptin, the drug that messed up my heart, since my Her2/neu positive cancer needed that drug to remain at bay.  Unfortunately though, the doctors and the scientists just can’t seem to get this stuff right.

According to a study out last week in the New York Times, scientists are now discovering what all along I feared; the tests they do on tumors to see what their markers are (mine was Her2/neu positive and ER/positive) are now being considered untrustworthy.  This means that the drugs used to treat these particular types of cancers, which have many side effects, may be unnecessary.

HER2 tests, for instance, can give false-positives up to 20 percent of the time, wrongly telling women they need the drug when they do not. Five percent to 10 percent of the time the tests can falsely tell a woman that she should not take the drug, when she should.

“The science is still evolving,” Dr. Bloss said. “What was true last year may not be true this year.”

My original tests were done at a local hospital in Winchester.  When I decided to continue my treatment at Dana -Farber Cancer Institute in Boston, I asked on numerous occasions if they had re-tested my tumors to make sure they were Her2/Neu positive.  My oncologist and my breast surgeon said they had but I never felt like they actually did a re-test.  Answers were quick and vague and from their answers it seemed to me that they just looked over the results from Winchester Hospital.  This study shows that different hospitals test differently.  There is no standardized tests available.

The two large national studies of Herceptin for women with HER2 positive early-stage breast cancer were just starting in 2001 when Dr. Perez, of the Mayo Clinic, a principal investigator, had a moment of truth. Women were having HER2 tests at a variety of places — community hospitals, major medical centers, national labs. Dr. Perez decided to retest tumors in a central lab to confirm the results.

The outcome stunned her and her colleagues. Twenty percent of the first 119 women whose initial tests indicated their tumors had excess HER2 turned out not to have it on retesting.

“We all felt, ‘Oh boy, we have a problem,’ ” said Dr. Wolff, a study investigator. “This was huge.”

So the studies were modified to require central labs to retest all the tumors.

Yet the discordance remained — one-sixth of women told by local labs that they were HER2 positive were not on retesting.

I was also found to be ER positive. Which means my tumor was fed by estrogen.  For this reason, I take Tamoxifen for 5 years.  Again, this is based on what I assume is the initial testing done at Winchester Hospital.  The article states that there are discrepancies with those tests as well.

Like the HER2 tests, other molecular tests for breast cancer also have problems. Those tests, for estrogen receptors on breast cancer cells, determine whether cancer will be thwarted by drugs that deprive tumors of estrogen. They can be wrong at least 10 percent of the time. Some estrogen-depleting drugs, while generally safe, increase the risk ofosteoporosis and, depending on the drug, can also cause joint pain and increase risks of stroke and cancer of the uterine lining.

Estrogen receptor tests are a muddle, noted Dr. Edith Perez, a breast cancer specialist at the Mayo Clinic in Jacksonville, Fla. Quite a few tests are being used, but Dr. Perez could not ascertain exactly how many or how good they were in predicting whether a tumor would respond to estrogen-depleting drugs.

So guidelines were set up, but still they found discrepancies.

There are all sorts of reasons why different labs can get different results, said Dr. Mitch Dowsett of the Royal Marsden Hospital in London and a member of the United States committee that formulated HER2 testing guidelines.

In borderline cases, pathologists can disagree. Or stain can pool in areas where a tumor was crushed or damaged, making it look, to inexperienced eyes, like a positive stain.

Twelve years after Herceptin was approved for women with advanced breast cancer, “we’re still trying to refine the testing,” said Ms. Pellegrino of Genentech.

It is too late for me to do anything about the Herceptin.  If my testing was wrong and I took the Herceptin unnecessarily that I can not change that now.  I will caution any one reading this who is in the beginning stages of their cancer, though, to make sure you demand to be tested 3 or 4 times until they get it right.

As far as the Tamoxifen goes, I haven’t decided yet.  I could stop taking it now, I could dive into that water of faith and hope to swim for years without the recurring sting of cancer.  I will probably ask to be re-tested at some point but then it is up to me.  Do I base my decisions on fear of what might happen or do I trust in science and doctors who are now seeming to me to be quite baffled about how to handle cancer in all it’s forms? Or do I say the “hell with it”, throw off my towel and run head long into the waves, taking my fate into my own hands?  I would  very much like to stop living in fear of what might be, I believe there is a true freedom in that way of living and the only real way to find peace.

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