This is about whether or not a patient has a right to be informed.
Dwight Rimes was a hospital administrator for years. His wife, Jerry, never missed her annual screenings, including mammograms.
Then she found cancer that had been growing in her breast for years.
What had she missed?
Each year since 2011, she would get a simple note from the imaging centers where her mammograms were done: “Normal.”
Basically, each of them said “see you next year,” Dwight Rimes explained.
What she didn’t know about — and neither did he — was a radiologist’s report she could have asked for. In her case, that report held a haunting explanation of “normal.”
Her reports, which they discovered later, said she had dense breasts, “which may obscure a lesion on a mammogram.”
Her cancer was going undetected by mammograms year after year.
Dwight Rimes explains it this way: If a breast is dense enough, finding a cancer lesion with a mammogram could be like looking for a cotton ball in a snow storm.
“Why weren’t we told of this risk?” he asks now.
Mississippi law doesn’t require it, for one thing.
The Rimeses learned about it when she detected a sign of breast cancer on her own this year — four months after receiving a “normal” designation from her mammogram report. She is undergoing grueling treatments, because the cancer had grown undetected for years.
Now they want to warn other women who have dense breasts: A “normal” may simply mean mammogram technology was unable to get a clear shot and show cancer.
50%of women have dense breasts
When he learned that women with the two categories of breast density considered “dense breasts” make up 40 to 50 percent of the female population, he was baffled.
“We’re doing mammograms on half the women and it’s not doing any good,” he said.
There are more screening options for these women, if they know to ask.
Women with dense breasts can have an ultrasound, which is much more likely to detect cancer for them, he said. Also, MRIs are much more likely to detect breast cancer in women with dense breasts. And 3D mammograms, rather new to the Mississippi Coast, are an option. Merit Health will get 3D technology early next year.
But how would a women know to ask about this, he asked, if she hasn’t been told she has dense breast, which makes her more at risk for cancer? In fact, a recent study published in JAMA Oncology showed it’s the highest risk factor for breast cancer, higher even than having a family history of cancer.
“I’m not saying don’t get a mammogram,” Rimes said, “or you need an ultrasound. I’m just saying ask, be informed. Talk with your primary care doctor or GYN (gynecologist).”
What is ‘unnecessary’?
Sitting at his kitchen table, Dwight Rimes has a small stack of print-outs where he has been doing internet research on dense breasts.
“I’m not a doctor or clinician,” he said. “This is based on research and personal opinion.”
He said it breaks his heart to lay next to his wife at night when she is so uncomfortable with the harsh chemotherapy that is now needed to stop the cancer that spread in her body.
He said he doesn’t know why Mississippi doesn’t require doctors and radiologists to inform women with dense breasts. It may be about the cost of doing “unnecessary” ultrasounds, MRIs and biopsies or the extra work for radiologists who would have to generate a report in plain language to warn women with dense breasts, he said.
I’m not saying don’t get a mammogram, or you need an ultrasound. I’m just saying ask, be informed. Talk with your primary care doctor or GYN (gynecologist).
Dwight Rimes, husband of cancer patient
The words “cost” and “unnecessary” don’t sit well with him.
“So they do 100 ultrasounds or MRIs and only two find cancer in a woman with dense breasts,” he says, a cancer that would have been undetected by mammograms. “It would be worth it for those two!”
It might cost $300,000 to $400,000 for those tests, he said. But what he has is $1 million in medical bills and untold suffering to compare.
Maybe it’s not that simple.
Dr. Lisa Mabry is a radiologist with special fellowship training in breast imaging. She is with Merit Health in Biloxi and works in two Compass imaging centers.
She believes women who have dense breasts should be informed so they can have a discussion with their doctors about what to do next.
No matter what the breast density, mammograms are the gold standard for breast cancer detection and catch things other types of screenings may not, she said. The issue with other screenings is that they may reveal too much.
An ultrasound could show things that look like cancer but are not, triggering painful biopsies to find that it’s not cancer. (Only 1 in 10 women who have a positive screening mammogram are found to actually have cancer.)
“Ultimately, there needs to be more research on how to best screen these women with dense breasts,” she said.
Dr. John A. Banahan Jr., a radiologist with Singing River Health System, acknowledges that having dense breast tissue does make detection of malignancy more difficult.
“It also is associated with an increased risk of breast cancer,” he said. “Therefore, I do feel that patients have a right to know if they have dense breast.”
He said SRHS does add a statement at the end of its reports “to inform our patients if they fall into the latter two categories of heterogeneously or extremely dense breasts.”
SRHS does this even though this action is not currently required by Mississippi law.
Other hospitals and imaging centers on the Coast do not, so women need to ask.
Who says they should tell?
Breast tissue is considered “dense” because it appears thicker, white and difficult to see through on a mammogram, compared with breasts that are mostly fat.
According to a breast imaging website that tracks these things, more than 30 states have passed laws that require the medical community to notify women if they have dense breasts, and five states have legislation pending.
There may be more, but that’s enough for Rimes to exclaim that Mississippi is behind the times. Several of those states — Louisiana, Alabama, Tennessee, Texas and South Carolina — are in the South. So he said that means Mississippi is lagging behind its own region.
These laws vary, but the intent is to inform women, the website says, give women the necessary information to decide if they want to take further action, like other screenings.
The Mississippi Senate gave such a law a shot this year, Rimes explains, but it was diluted before it passed and essentially says nothing about breast density or the risk these women are taking in using mammogram only.
The best information letter, the website says, would be to start right out explaining that the patient has received a notification because her mammogram indicates she has dense breasts, it’s normal, but can make cancer harder to find. It also needs to say she’s at higher risk of breast cancer because of her breast density.
Rimes just wants to reiterate that not telling women — almost half the women in the population — that they have dense breasts is standard practice in Mississippi.
“If this had just happened to her (that no one told Jerry of the risks), I’d say, she’s unlucky,” Rimes said. “But no, it’s the standard practice ... what we’ve done for so long, what we’re still doing.”
Example of SRHS notification
Singing River Health System informs its patients if they have dense breasts, even though it is not required by state law. This is an example of how:
Your mammogram shows that your breast tissue is dense. Dense breast tissue is very common and is not abnormal. However, dense breast tissue may make it harder to find cancer on a mammogram and may also be associated with an increase risk of breast cancer.
This information about your mammogram is given to you to raise your awareness. Use this information to talk to you doctor about your own risks for breast cancer. At that time, ask you doctor if more screening tests might be useful, based on your risk. A report of your results was sent to your physician.
Four categories of breast density
- The first category is fatty replaced (approximately 10 percent of females fall into this category).
- The next category is scattered Fibroglandular density (approximately 40 percent fall into this category)
- Third is heterogeneously dense (approximately 40 percent fall into this category)
- And last category is extremely dense breast (approximately 10 percent of women fall into this category)
The latter of the two categories (heterogeneously dense and extremely dense) are considered “dense breast.” Physicians who are credentialed to read mammography have extensive experience in this arena.
Singing River Health System’s Dr. John A. Banahan Jr.