“DCIS isn’t really cancer. You have nothing to worry about,” said my oncologist confidently.
“Then why am I having a mastectomy in four days?” I blurted.
“DCIS doesn’t spread. So it isn’t cancer.”
“But the “c” stands for carcinoma, a cancer of epithelial tissue. How is that not cancer?” I asked.
“DCIS. Can’t. Spread.”
Case closed. But I knew what he meant. Ductal carcinoma in situ isn’t cancer, some say, because “in situ” means “in place,” and invading healthy tissue is one of the nine characteristics of cancer I’ve listed for years in my textbooks. Eight out of nine was enough to convince me that Hannibal had to go.
Why name my DCIS?
If Hannibal Lecter, the fictitious cannibal serial killer in the book and film The Silence of the Lambs, remained in prison, he couldn’t eat any more people. But if he got out, he could. Does that mean that the incarcerated Hannibal isn’t a cannibal, just because he’s temporarily contained? Of course not. Likewise, the risk that the abnormal cells that filled a duct in my breast would spill out and spread into an invasive cancer, if not removed, was about 40 percent, likely within 5 years.
Confusing Terminology
DCIS is considered stage 0, but it becomes stage 1 (DCIS with microinvasion) when it breaks through the milk duct wall. Once through, it’s invasive ductal carcinoma (IDC). But that’s not all.
“Grade” describes the shape that the errant cells pile into, which reflects their division rate – papillary (finger-like), cribriform (like Swiss cheese), or solid, for low grade (I) or moderate grade (II).
But if the grade is high (III), like mine, the duct is filled and has dark spots (called comedo necrosis) where the cells are dividing so fast that some of them starve to death. Wonderful. Gene expression patterns and hormone receptor status further describe DCIS cells.
I knew my doctor meant well, but I’d seen the mammogram and read the biopsy report and knew Hannibal was on the brink of escape. The oncologist evoked an oxymoron: If DCIS escapes the duct, it’s no longer DCIS, but IDC. Therefore, DCIS can’t be cancer. Hannibal can’t be a cannibal.
I didn’t think much more about the doctor’s downplaying until I saw a post on a closed Facebook group I’m on with about 15,000 women at various stages of the breast cancer journey. A woman’s husband was refusing to take time off work to help her in the days following her surgery because “the doctor said it isn’t really cancer.”
That’s a game changer.
Medical students are asked to recite “primum non nocere,” or “first, do no harm,” which comes from ancient Greek physician Hippocrates’ Of The Epidemics. Saying cancer isn’t cancer to calm fears can indeed do harm.
Patients Speak Out
When my PLOS editor asked bloggers to post about cancer this week, to coincide with the American Association of Cancer Research (AACR) annual meeting, I thought I’d ask the breast cancer group about DCIS being “not really cancer.”
Within minutes, several versions of “If DCIS isn’t cancer, why a lumpectomy or mastectomy?” appeared. Not a single woman considered her DCIS anything but cancer.
“Calling DCIS not cancer made the journey so much harder for me. It took me 5 months to figure out what to do … 5 months of sleepless nights, stressed days, and constant thinking. I have found it all quite traumatic.”
“In my opinion DCIS is definitely cancer and it is not helpful to suggest otherwise. It is not YET invasive, but has the ability to become so. It is defined by its histological features, and those features involve the characteristics of cancer cells.”
“I never really thought about this before, so I searched it a bit. The first thing this article lists about DCIS is that it’s NOT cancer because cancer has to be able to grow and spread unabated. I think saying that it is not cancer because it has not YET spread is very misleading.”
“The medical world is not in agreement on this at all. If they aren’t clear about it, then how could the patients be?”
Having cancer is terrifying enough, without having to interpret mixed messages.
Active Surveillance for DCIS?
A few women’s doctors mentioned not treating DCIS and just seeing what happened – but no one chose this option.
“I’m not about to sit around waiting to see if this thing breaks out and invades other areas or not. No, thank you. When the doctor told me about a study to leave it alone, I did not jump up and ask “oh, how do I get into that study?” I realize that I am taking a big chance that this treatment is not necessary, but I’m not willing to bet any other way,” wrote one woman.
She’s right. There’s already plenty of evidence that even a low-grade DCIS allowed to sit around in situ may eventually burst its boundaries. Here’s an article that helpfully puts its conclusions in the title: “Continued observation of the natural history of low-grade ductal carcinoma in situ reaffirms proclivity for local recurrence even after more than 30 years of follow-up."
Still not cancer?
An ongoing 84-center clinical trial is conducting the obvious experiment: comparing the fate of women who have low-grade DCIS with and without surgery. The untreated participants do active surveillance, similar to what’s been done for prostate cancer for more than a decade. Active surveillance requires more frequent diagnostic testing than simply “watchful waiting.”
Economics seems to be driving the study, not necessarily the angst that we women feel when bad news is dumbed down. “The national health care expenditure resulting from false positive mammograms and breast cancer overdiagnosis has been estimated to approach $4 billion annually. There is general consensus that much of this burden derives from the treatment of DCIS; for those estimated 40,000 women per year whose DCIS may never have progressed even without treatment, medical intervention can only harm,” states the ClinicalTrials.gov listing.
The study is following 1200 women for 2 years, 600 having undergone lumpectomy or mastectomy and 600 not, to see how many develop IDC on the same side as the DCIS. The cancer cells must be estrogen or progesterone receptor positive, the tumor grade I or II, and no comedo necrosis.
It’s a terrific experimental design because the secondary outcomes assess repercussions of having breast cancer that I didn’t even know existed until it hit me a few months ago. The study is probing the obvious – risk perception, anxiety, depression, and body image – but also “intolerance of uncertainty” and “decisional regret.” It also is examining “communication with physicians” (hello?) and employment and financial status, two huge sources of stress. Descriptors for “specific breast pains” in the analysis are wide-ranging, from the chronic and serious post-mastectomy pain syndrome to annoying electric-shock-like zaps and twinges.
Another measure is “concerns about future breast events.” That’s huge. Once a woman is deemed “NED” (“no evidence of disease”), is it better to be an ostrich, or read every new study? And should I consider population studies or anecdotes?
Good News
Statistics say the chance of IDC following DCIS surgery is less than 1%. But Facebook posts of cancer’s return aren’t unusual: “I was diagnosed with DCIS in 2007. No chemo or radiation. Lymph nodes clear. Mastectomy out of fear and took Arimedix for 5 years. In 2016 it came back in my spine and 2 spots in my lungs.” I’ve been informally keeping track and 9 years seems to be a common point of return. So much for the olden days when a cancer was considered “cured” after 5 years had passed. NED, not cure.
I was cheered to find media coverage of a study from about a year ago, “Women With DCIS Live Longer Than General Population." The study, actually a poster presented at the 2017 European Cancer Congress, tracked 9,799 women treated for DCIS in the Netherlands from 1989 to 2004 for 10 years. About 3% of them died from breast cancer, only slightly more than the general population. But the women were less likely to die from a bunch of other conditions, because, the researchers conjecture, they’re more health-conscious than most folks.
Alas, a quote from the researcher clouded my joy. “There are a lot of uncertainties and anxiety associated with DCIS because many patients think they are diagnosed with breast cancer. Some DCIS lesions will progress into invasive breast cancer and can metastasize and then cause death. So it’s important to look at the outcomes,” said Lotte Elshof, of the Netherlands Cancer Institute in Amsterdam. Did I just THINK I was diagnosed? What was the biopsy then, a random boob harpoon?
Another way to use new findings is to more finely parse the diagnosis: “Women with DCIS at lowest risk of recurrence if they are post-menopausal or ER+,” claimed one recent study. Such population trends are interesting, but I wanted genetic evidence – and those findings aren’t so good.
Bad News
In a study published in Cell in January, researchers sequenced the cancer-causing mutations in 1,293 tumor cells from 10 patients, comparing the genetic profiles of DCIS cells to those of IDC cells in the same woman. A Nature News and Views article about the report notes “the remarkable genetic similarity of a patient’s tumour cells in these two distinct disease states.” That is, the mutational seeds of invasiveness are right there in DCIS.
Still not cancer?
I’m hopeful that ongoing investigations of gene expression and epigenetic patterns may find a way to predict which DCIS cells will go rogue.
A paper in a recent issue of Science Translational Medicine also caught my attention, if so far applicable only to rodents. Robert Weinberg of the Whitehead Institute and colleagues found that T cells in uninjured mice could attack injected cancer cells, but tumor cells injected into mice healing from an injury metastasized. Might surgery to remove cancer divert the immune system into healing, allowing bits of dormant cancer elsewhere to spring up? “The new study may explain why breast cancer metastases sometimes appear 12 to 18 months after surgical intervention, an outstanding question that has long been debated,” announced the news release. Happily, though, anti-inflammatories kept the mouse tumors small.
Final Thoughts
I’m not content with my oncologist’s “DCIS isn’t really cancer.” Genetically, it is. Histologically, it is. And the pathology report indicated that even though the margins around the filled duct were clear, Hannibal was sliced but not diced – only “representative sections” submitted for analysis. That leaves room for the ticking time bomb that is cancer.
A breast cancer diagnosis divides time. In the after, my new normal, I think often, too often, of that ticking time bomb, although I know the statistics say it isn’t likely to detonate. So I’ve decided to acknowledge my fear for just a moment every morning. And then get on with appreciating the new day.
Other DNA Science posts about breast cancer:
Rare Disease Week Through a New Lens: Having a Common Disease, Breast Cancer
How Genetic Testing Guided My Breast Cancer Journey – To Eschewing Beef
Dueling BRCA Databases: What About the Patient?
Assessing Breast Cancer Risk: Beyond the Angelina Effect
A BRCA Journey
This post first appeared at my DNA Science blog for Public Library of Science.
“Then why am I having a mastectomy in four days?” I blurted.
“DCIS doesn’t spread. So it isn’t cancer.”
“But the “c” stands for carcinoma, a cancer of epithelial tissue. How is that not cancer?” I asked.
“DCIS. Can’t. Spread.”
Case closed. But I knew what he meant. Ductal carcinoma in situ isn’t cancer, some say, because “in situ” means “in place,” and invading healthy tissue is one of the nine characteristics of cancer I’ve listed for years in my textbooks. Eight out of nine was enough to convince me that Hannibal had to go.
Why name my DCIS?
If Hannibal Lecter, the fictitious cannibal serial killer in the book and film The Silence of the Lambs, remained in prison, he couldn’t eat any more people. But if he got out, he could. Does that mean that the incarcerated Hannibal isn’t a cannibal, just because he’s temporarily contained? Of course not. Likewise, the risk that the abnormal cells that filled a duct in my breast would spill out and spread into an invasive cancer, if not removed, was about 40 percent, likely within 5 years.
Confusing Terminology
DCIS is considered stage 0, but it becomes stage 1 (DCIS with microinvasion) when it breaks through the milk duct wall. Once through, it’s invasive ductal carcinoma (IDC). But that’s not all.
“Grade” describes the shape that the errant cells pile into, which reflects their division rate – papillary (finger-like), cribriform (like Swiss cheese), or solid, for low grade (I) or moderate grade (II).
But if the grade is high (III), like mine, the duct is filled and has dark spots (called comedo necrosis) where the cells are dividing so fast that some of them starve to death. Wonderful. Gene expression patterns and hormone receptor status further describe DCIS cells.
I knew my doctor meant well, but I’d seen the mammogram and read the biopsy report and knew Hannibal was on the brink of escape. The oncologist evoked an oxymoron: If DCIS escapes the duct, it’s no longer DCIS, but IDC. Therefore, DCIS can’t be cancer. Hannibal can’t be a cannibal.
I didn’t think much more about the doctor’s downplaying until I saw a post on a closed Facebook group I’m on with about 15,000 women at various stages of the breast cancer journey. A woman’s husband was refusing to take time off work to help her in the days following her surgery because “the doctor said it isn’t really cancer.”
That’s a game changer.
Medical students are asked to recite “primum non nocere,” or “first, do no harm,” which comes from ancient Greek physician Hippocrates’ Of The Epidemics. Saying cancer isn’t cancer to calm fears can indeed do harm.
Patients Speak Out
When my PLOS editor asked bloggers to post about cancer this week, to coincide with the American Association of Cancer Research (AACR) annual meeting, I thought I’d ask the breast cancer group about DCIS being “not really cancer.”
Within minutes, several versions of “If DCIS isn’t cancer, why a lumpectomy or mastectomy?” appeared. Not a single woman considered her DCIS anything but cancer.
“Calling DCIS not cancer made the journey so much harder for me. It took me 5 months to figure out what to do … 5 months of sleepless nights, stressed days, and constant thinking. I have found it all quite traumatic.”
“In my opinion DCIS is definitely cancer and it is not helpful to suggest otherwise. It is not YET invasive, but has the ability to become so. It is defined by its histological features, and those features involve the characteristics of cancer cells.”
“I never really thought about this before, so I searched it a bit. The first thing this article lists about DCIS is that it’s NOT cancer because cancer has to be able to grow and spread unabated. I think saying that it is not cancer because it has not YET spread is very misleading.”
“The medical world is not in agreement on this at all. If they aren’t clear about it, then how could the patients be?”
Having cancer is terrifying enough, without having to interpret mixed messages.
Active Surveillance for DCIS?
A few women’s doctors mentioned not treating DCIS and just seeing what happened – but no one chose this option.
“I’m not about to sit around waiting to see if this thing breaks out and invades other areas or not. No, thank you. When the doctor told me about a study to leave it alone, I did not jump up and ask “oh, how do I get into that study?” I realize that I am taking a big chance that this treatment is not necessary, but I’m not willing to bet any other way,” wrote one woman.
She’s right. There’s already plenty of evidence that even a low-grade DCIS allowed to sit around in situ may eventually burst its boundaries. Here’s an article that helpfully puts its conclusions in the title: “Continued observation of the natural history of low-grade ductal carcinoma in situ reaffirms proclivity for local recurrence even after more than 30 years of follow-up."
Still not cancer?
An ongoing 84-center clinical trial is conducting the obvious experiment: comparing the fate of women who have low-grade DCIS with and without surgery. The untreated participants do active surveillance, similar to what’s been done for prostate cancer for more than a decade. Active surveillance requires more frequent diagnostic testing than simply “watchful waiting.”
Economics seems to be driving the study, not necessarily the angst that we women feel when bad news is dumbed down. “The national health care expenditure resulting from false positive mammograms and breast cancer overdiagnosis has been estimated to approach $4 billion annually. There is general consensus that much of this burden derives from the treatment of DCIS; for those estimated 40,000 women per year whose DCIS may never have progressed even without treatment, medical intervention can only harm,” states the ClinicalTrials.gov listing.
The study is following 1200 women for 2 years, 600 having undergone lumpectomy or mastectomy and 600 not, to see how many develop IDC on the same side as the DCIS. The cancer cells must be estrogen or progesterone receptor positive, the tumor grade I or II, and no comedo necrosis.
It’s a terrific experimental design because the secondary outcomes assess repercussions of having breast cancer that I didn’t even know existed until it hit me a few months ago. The study is probing the obvious – risk perception, anxiety, depression, and body image – but also “intolerance of uncertainty” and “decisional regret.” It also is examining “communication with physicians” (hello?) and employment and financial status, two huge sources of stress. Descriptors for “specific breast pains” in the analysis are wide-ranging, from the chronic and serious post-mastectomy pain syndrome to annoying electric-shock-like zaps and twinges.
Another measure is “concerns about future breast events.” That’s huge. Once a woman is deemed “NED” (“no evidence of disease”), is it better to be an ostrich, or read every new study? And should I consider population studies or anecdotes?
Good News
Statistics say the chance of IDC following DCIS surgery is less than 1%. But Facebook posts of cancer’s return aren’t unusual: “I was diagnosed with DCIS in 2007. No chemo or radiation. Lymph nodes clear. Mastectomy out of fear and took Arimedix for 5 years. In 2016 it came back in my spine and 2 spots in my lungs.” I’ve been informally keeping track and 9 years seems to be a common point of return. So much for the olden days when a cancer was considered “cured” after 5 years had passed. NED, not cure.
I was cheered to find media coverage of a study from about a year ago, “Women With DCIS Live Longer Than General Population." The study, actually a poster presented at the 2017 European Cancer Congress, tracked 9,799 women treated for DCIS in the Netherlands from 1989 to 2004 for 10 years. About 3% of them died from breast cancer, only slightly more than the general population. But the women were less likely to die from a bunch of other conditions, because, the researchers conjecture, they’re more health-conscious than most folks.
Alas, a quote from the researcher clouded my joy. “There are a lot of uncertainties and anxiety associated with DCIS because many patients think they are diagnosed with breast cancer. Some DCIS lesions will progress into invasive breast cancer and can metastasize and then cause death. So it’s important to look at the outcomes,” said Lotte Elshof, of the Netherlands Cancer Institute in Amsterdam. Did I just THINK I was diagnosed? What was the biopsy then, a random boob harpoon?
Another way to use new findings is to more finely parse the diagnosis: “Women with DCIS at lowest risk of recurrence if they are post-menopausal or ER+,” claimed one recent study. Such population trends are interesting, but I wanted genetic evidence – and those findings aren’t so good.
Bad News
In a study published in Cell in January, researchers sequenced the cancer-causing mutations in 1,293 tumor cells from 10 patients, comparing the genetic profiles of DCIS cells to those of IDC cells in the same woman. A Nature News and Views article about the report notes “the remarkable genetic similarity of a patient’s tumour cells in these two distinct disease states.” That is, the mutational seeds of invasiveness are right there in DCIS.
Still not cancer?
I’m hopeful that ongoing investigations of gene expression and epigenetic patterns may find a way to predict which DCIS cells will go rogue.
A paper in a recent issue of Science Translational Medicine also caught my attention, if so far applicable only to rodents. Robert Weinberg of the Whitehead Institute and colleagues found that T cells in uninjured mice could attack injected cancer cells, but tumor cells injected into mice healing from an injury metastasized. Might surgery to remove cancer divert the immune system into healing, allowing bits of dormant cancer elsewhere to spring up? “The new study may explain why breast cancer metastases sometimes appear 12 to 18 months after surgical intervention, an outstanding question that has long been debated,” announced the news release. Happily, though, anti-inflammatories kept the mouse tumors small.
Final Thoughts
I’m not content with my oncologist’s “DCIS isn’t really cancer.” Genetically, it is. Histologically, it is. And the pathology report indicated that even though the margins around the filled duct were clear, Hannibal was sliced but not diced – only “representative sections” submitted for analysis. That leaves room for the ticking time bomb that is cancer.
A breast cancer diagnosis divides time. In the after, my new normal, I think often, too often, of that ticking time bomb, although I know the statistics say it isn’t likely to detonate. So I’ve decided to acknowledge my fear for just a moment every morning. And then get on with appreciating the new day.
Other DNA Science posts about breast cancer:
Rare Disease Week Through a New Lens: Having a Common Disease, Breast Cancer
How Genetic Testing Guided My Breast Cancer Journey – To Eschewing Beef
Dueling BRCA Databases: What About the Patient?
Assessing Breast Cancer Risk: Beyond the Angelina Effect
A BRCA Journey
This post first appeared at my DNA Science blog for Public Library of Science.