Wednesday, March 28, 2007

VIGILANCE

For a long time I have been advising fellow BC survivors who had breast conserving surgery, lumpectomy, to not rely solely on mammograms or ultrasounds. For one thing, many cancers do not show up on these tests. Particularly if you have dense breasts. My first cancer showed up on mammo but did not show up on ultrasound and the option of "wait and see" was offered because of the lack of sonographic evidence of something suspicious. I chose to get a biopsy and I am glad I did because my cancer was found while it was still small.

I had a lumpectomy so I was followed very closely by my medical team because I had an aggressive cancer, I was diagnosed young, before the age of 40, I had dense breasts and women who have breast cancer in one breast are more likely to develop it in the other. Our surveillance consisted of alternating mammogram/ultrasounds with breast MRIs. Every six months. For example, in January I would get a mammo and in June I would get the MRI.

Insurance companies are not fond of this practice. In fact, they can find it "not medically necessary" even if you are a cancer survivor. So you have to fight for it until they say yes. I had one fight with my insurance company where they would only approve the breast MRI in one breast. I would have to "re-apply" for the other one. Since they study BOTH breasts at the time of the test this was an insane denial. Eventually we worked it out.

There are two schools of thought out there in Cancerland. One is, don't get scans because if you find metastatic disease it is too late anyway and you can't be cured. They believe that regular screenings only cause stress.

The other school of thought is- GET SCREENED OFTEN- because you may find a cancer BEFORE it has spread, and if you find a metastatic lesion that is only in one area, such as a spot on the bone, you can treat it and often eradicate it BEFORE it spreads to more organs.

I am a member of the GET SCREENED school of thought. I have been vigilant and frankly a pain in the ass. But it paid off. Because a NEW cancer was found, by breast MRI, in my "good" breast. This is a new primary, which means it is NOT a recurrance of my first cancer, therefore it is not my first cancer "coming back." This is very good. Because a new primary is just like fighting your cancer for the first time- while it is still curable.

However, had I not been getting screenings and MRIs it would NOT have been detected. And this is a big cancer. It also had spread to four of my lymph nodes. Had I waited? It very well could have spread to become metastatic disease.

So girls: GET SCREENED. Yes, it causes stress. Take an ativan or have a gin and tonic-- whatever gets you through the anxiety of waiting for results. Because you don't want to find ANYTHING too late when it truly is untreatable.

And now, reprinted from today's NY Times, is an article to help back up your argument when the insurance company gives you a hard time.

March 28, 2007

Two reports being published today call for greatly expanded use of M.R.I. scans in women who have breast cancer or are at high risk for it.

The recommendations do not apply to most healthy women, who have only an average risk of developing the disease.

Even so, the new advice could add a million or more women a year to those who need breast magnetic resonance imaging — a demand that radiologists are not yet equipped to meet, researchers say. The scans require special equipment, software and trained radiologists to read the results, and may not be available outside big cities.

Breast M.R.I. costs $1,000 to $2,000, and sometimes more — 10 times the cost of mammography — so a million more scans a year would cost at least $1 billion. It is sometimes covered by insurance and Medicare, sometimes not.

One report is a set of new guidelines for using M.R.I. in women at high risk for breast cancer, and the other is a study in The New England Journal of Medicine showing that in women who have newly diagnosed cancer in one breast, M.R.I. can find tumors in the other breast that mammograms miss.

M.R.I. has drawbacks. It is so sensitive — much more so than mammography — that it reveals all sorts of suspicious growths in the breast, leading to many repeat scans and biopsies for things that turn out to be benign. For women who are likely to have hidden tumors, the prospect of such false-positive findings may be acceptable. But the risk of needless biopsies and additional scans is not considered reasonable for women with just an average risk of breast cancer, and is the main reason M.R.I. is not recommended for them.

The new guidelines, from the American Cancer Society, are being published in the society’s journal CA: A Cancer Journal for Clinicians. They recommend scans and mammograms once a year starting at age 30 for high-risk women.

High risk is defined as a 20 percent to 25 percent or higher chance of developing breast cancer over the course of a lifetime. (The average lifetime risk for women in the United States is 12 percent to 13 percent.)

The high-risk group includes women who are prone to breast cancer because they have certain genetic mutations, BRCA1 or BRCA2, or those whose mothers, sisters or daughters carry those mutations, even if the woman herself has not been tested. These mutations are not common — they cause less than 10 percent of all breast cancers — but they greatly increase a woman’s risk, to 36 percent to 85 percent.

Women with even rarer mutations, in genes called TP53 or PTEN, are also advised to be screened, as are women who had radiation treatment to the chest between ages 10 and 30, for disorders like Hodgkin’s disease.

Others at high risk include women from families in which breast cancer is common, especially in their close relatives, even if no genetic mutation has been identified. Women and their doctors can estimate their odds by using one of several online risk calculators that factor in the medical history of both the woman and her family. A simple calculator is available at http://www.cancer.gov/bcrisktool/.

But different calculators can give quite different results, and women may need help from their doctors to interpret the results, said Dr. Elizabeth Morris, a member of the expert panel that drew up the guidelines and director of Breast M.R.I. at Memorial Sloan-Kettering Cancer Center in Manhattan.

“Just to figure out who should have it will be the hardest thing,” Dr. Morris said. “A lot of that onus is put on the referring physician. A lot of women are going to think they’re high risk, and they’re not.”

The cancer society said that for women with certain conditions, there was not enough information to recommend for or against M.R.I. screening. The uncertain group includes women with very dense breast tissue on mammograms, and women who had breast cancer in the past, or growths called carcinoma in situ or atypical hyperplasia.

Dr. Robert Smith, the cancer society’s director for screening, estimated that the new guidelines would add one million to two million women a year to the number who should have breast M.R.I.

Increased demand for such scans could easily outstrip the capacity, even though the number of centers offering them has increased markedly in the last five years, said Dr. Constance Lehman, another member of the panel that wrote the guidelines and a professor of radiology at the University of Washington. She said professional societies in radiology were scrambling to provide training and accreditation for the scans.

Insurers will probably cover the scans because the new guidelines are based on good evidence and promoted by a respected medical group, said Peter V. Lee, president of the Pacific Business Group on Health, a nonprofit coalition of large buyers of health care that cover about five million people. Huge amounts of money are now wasted on unnecessary M.R.I., Mr. Lee said, adding: “Here we have a case where there’s evidence. Hallelujah! Let’s use it.”

Not every imaging center is qualified to perform such scans, but some that are not up to par may offer it anyway, so patients must beware.

Special equipment is needed: a powerful, “high-field” magnet and a special breast coil to generate a magnetic field around the breast. The scan is done with the woman lying on her stomach on a special table with openings that let the breasts rest in wells surrounded by the coil.

“And you have to make sure they’re doing enough, not one a week, and make sure they have biopsy capability,” Dr. Morris said.

If the breast scan is done at a center that cannot perform biopsies, a woman with a suspicious finding may have to start all over again at another clinic.

The second new report describes a study showing that in women who had cancer in one breast, an M.R.I. scan of the other breast found tumors that mammograms had missed in 3 percent of the women. Researchers say M.R.I. can help women who already have one cancer by detecting a hidden tumor in the other breast, enabling them to have both cancers treated at once instead of having to go through treatment all over again when the second tumor is finally detected.

Research has shown that 10 percent of women who have cancer in one breast will eventually develop it in the other as well.

“This study supports the recommendation that women who are diagnosed with breast cancer consider the benefits of a breast M.R.,” said Dr. Lehman, the senior author of the study. “What we think is most important is that we understand the full extent of a woman’s breast cancer before her therapy is initiated.”

The scans are recommended in newly diagnosed cases, but not for most women who had breast cancer treated in the past.

Currently, women with newly diagnosed cancer in one breast are given mammograms of the other, but only a minority are offered M.R.I., Dr. Lehman said. This year, about 180,000 new cases of breast cancer are expected in the United States.

Some surgeons think every woman with a new diagnosis of breast cancer should have an M.R.I. of the other breast, and some think no one should, Dr. Morris said. She said the scans were most likely to be useful in younger women with breast cancer and dense tissue that hides tumors from mammograms. In older women with small, early tumors and clear mammograms, she said, such scanning is less important.

The study findings will make it harder for insurance companies to refuse to pay for such scans of the second breast in women with breast cancer, said Dr. Etta D. Pisano, another author of the study and a professor of radiology at the University of North Carolina.

The study, conducted at 25 medical centers, included 969 women with recently diagnosed cancer in one breast and a normal mammogram on the other. All were given M.R.I. scans, which discovered cancers in the supposedly healthy breast in 30 women, 3.1 percent of the group. Nearly all the cancers were at an early stage, and were treated at the same time as the ones originally discovered.

Without the scans, Dr. Lehman said, the tumors would not have been found until later, and then the women would have had to go through surgery, and perhaps radiation and chemotherapy as well, all over again. “We know cancers diagnosed later in these women don’t do as well as cancers diagnosed initially,” she said.

But to find 30 cancers, 121 women had biopsies, which were ordered because of abnormalities on M.R.I. That means 91 false-positive scans and biopsies of healthy tissue, and a false-positive rate of about 10 percent. Dr. Lehman said most cancer patients were willing to accept the risk of a false-positive and a biopsy in order to find out whether there was anything to worry about in the other breast.

The study was paid for by the National Cancer Institute.

2 comments:

Jenster said...

I followed you over here from bc.org. :o)

I saw Marissa on GMA this morning with this information. Very important!

Jayne said...

Here from bc.org as well...

I was dx with lobular cancer (06). MRIs do a much better job picking up lobular, which can be a huge tumor and STILL not show up on a mammogram.

In my case I could feel my lump and yet it remained invisible to mammograpy. The MRI did a good job of sizing it.