MBCN Responds: Metastatic Recurrence Rate Statistics

Editor’s note: Blogger Ann Silberman has asked that we link to the blog in question. We have added her name and said link.

Recently,  metastatic breast cancer blogger Ann Silberman questioned some frequently cited statistics concerning the number of people treated for early stage breast cancer who go on to have a metastatic recurrence. The blogger suggested that the Metastatic Breast Cancer Network (MBCN) was the source for a Facebook graphic which decries the number of early stage breast cancer patients who go on to have a metastatic recurrence. MBCN is not the source for this artwork–the graphic’s creator has indicated she corresponded with another breast cancer organization to arrive at the stated number.

MBCN also would like to note the discrepancy between the blogger’s account of the given statistic and what the MBCN site actually says. Please note that the statement on our website is carefully worded. It says: “It is estimated that 20 to 30% of all breast cancer cases will become metastatic.”  Here is a screenshot of the MBCN webpage:

Why Does MBCN Have This Statement on its Website?

The numbers were cited by an oncologist who treats and does research on behalf of metastatic breast cancer patients. More significantly, it highlights a critically important issue: Despite excellent standard of care for people with early stage patients, some patients go on to receive a metastatic diagnosis 5, 10, 15 and even  20 years later. Scientists do not know why this happens–and unfortunately, there is no cure for metastatic breast cancer.

Why Is the Recurrence Rate So Important?

We need the public and early stage patients to support metastatic research because no one can be told with absolute confidence that they are cured after treatment for early stage breast cancer. Note this 2011 presentation:

Source: Musa Mayer, http://advancedbc.org/files/Mayer_NBCC_2011_0.pdf

Why Is is it So Difficult to Find MBC Reccurence Rates?

Oncologists and researchers often refer to the heterogeneity of breast cancer, meaning it isn’t one disease. Triple-negative subtype, for example generally have a higher metastatic recurrence risk vs. the hormone-positive disease. Tumor size and node involvement also can play a role in an individual’s risk for recurrence. The more conservative 20-30% figure MBCN uses is an aggregate number that includes Stages I-III, with much lower percentages for Stage I.

Another reason for the scarcity of statistics is that patients with recurrences are not counted.

• NCI and SEER databases record  incidence, initial treatment and mortality data. Most people do NOT present with metastatic diagnosis. The cancer registry does not track recurrence—which is how the majority of people are thrust into the metastatic breast cancer ranks.
• We estimate that there are 150,000 US people currently living with metastatic breast cancer, but we don’t know exact numbers.
• We know for sure that almost 40,000 US people die from breast cancer every year. We know that 5 to10 percent of those with metastatic breast cancer were Stage IV from their first diagnosis. So what about the 90 to 95% of those 150,000 currently living with metastatic breast cancer  who were previously treated for early stage breast cancer? The cancer registry does not track them—until they die. (Here is a general explanation of how cancer registries work. And here is an overview of some epidemiology basics.)

What Is MBCN Doing to Ensure People with MBC are Counted?

MBCN is a founding member of the Metastatic Breast Cancer Alliance which is currently collaborating with other agencies and registries to initiate a epidemiology pilot study designed to achieve more accurate data about the prevalance and disease course of MBC. On August 11, 2015, the Alliance will offer a free webinar to provide an update on its activities.

Is This Statistic Too High or Too Low?

We don’t know– and frankly no one does. As noted above,  there are currently massive gaps in how people with metastatic breast cancer are counted.  But there are certainly some who feel strongly the number is lower rather than higher.  The following is from ACS Breast Cancer Facts and Figures 2013-14

Breast Cancer Survival and Stage at Diagnosis

 Relative survival rates are an estimate of the number of patients who will survive for a given time after a cancer diagnosis.  It differs from observed survival in that it accounts for deaths from other causes by comparing among cancer patient to survival among people of the same age and race who have not been diagnosed with cancer.  

 Based on the most recent data, relative survival rates for women diagnosed with breast cancer are:

•  89% at 5 years after diagnosis
• 83% after 10 years
• 78% after 15 years

“Of course, women keep dying of MBC longer than 15 years after their initial diagnoses,” notes Musa Mayer, patient advocate and Member, Steering (Executive) Committee, Metastatic Breast Cancer Alliance. “According to SEER statistics:  18 year relative survival for patients diagnosed from 1990-1994 is 71% which takes us really close to the 30% figure.  However, it’s important to bear in mind that none of these patients would have been offered Herceptin, not even in the metastatic setting.  With adjuvant Herceptin cutting recurrence rates in half, this is a big difference.  Fewer hormonal options existed as well.”

Unfortunately, Herceptin is not an option for all breast cancer patients. HER2 positive breast cancer--i.e., the subtype Herceptin targets–accounts for about 15 to 20 percent of all breast cancers;  ER/PR+; HER2-  is the most common subtype, accounting for 65% of breast cancer cases;  the triple negative subtype accounts for 15% of breast cancer cases.

What About Mortality Rates?

Some argue that mortality numbers tell the story more precisely than survival numbers. Screening skews the survival numbers:  The more we screen, the more we diagnose and treat women with breast cancers that would not have been a threat to their lives,  so it looks like relative survival for early stage breast cancer is 89 percent.  Yet an estimated 40,000 US people die annually from metastatic breast cancer.

Earlier this year, Dr. Aaron E. Carroll wrote a New York Times article called “Why Survival Rate Is Not the Best Way to Judge Cancer Spending.” His explanation of over diagnosis bias is compelling:

Let’s say that a certain number of cases of [mythical]  thumb cancer that are detectable by scan never progress to a lump. That means some subclinical cases that would never lead to death are now being counted as diagnoses.

Since they were never dangerous, and we’re now picking them up by scans, they’re improving our survival rates. But they do nothing for mortality rates because no fewer people are dying. . . For many cancers, we’ve been diagnosing significantly more cases, but making little headway in mortality rates.

What’s Next?

MBCN prides itself on being a credible source of information for the metastatic breast cancer community. Unfortunately even the most well-meaning individual can misinterpret and/or  misattribute statistics. We do our best to present accurate information–we ask others to do likewise.

We understand the keen interest in recurrence statistics. We are doing a literature search and will report those findings shortly–but we expect those findings will closely track with all that we have said here.

We are working to change how metastatic breast cancer recurrences are tracked. But in 2015 this information remains undocumented. On the positive side, there have been some advances in the adjuvant treatment of early breast cancer over the past decade. This includes the use of adjuvant Herceptin, the use of adjuvant taxanes with AC regimens in triple-negative breast cancers and some incremental improvements in  hormonal treatment. And yet we still lose 110 US people to metastatic breast cancer every day. Clearly much work remains to be done.

Finally, we urge people not to apply  population-based statistics to their individual cases–we are each statistics of one!

Barbara: Learning How to Accept and Live with the Unacceptable

In 2002, Barbara Bigelow was diagnosed with Stage II breast cancer. She was 44 years old and had a strong family history: Her two older sisters also had been diagnosed with breast cancer.

Barbara spent 2002 in treatment: She had a lumpectomy, sentinel node biopsy, ancillary node dissection, chemotherapy with AC for 6 rounds and 7 weeks of radiation. Shortly after Barb finished treatment, her sister Mary died–just  six weeks after Mary’s metastatic breast cancer recurrence was discovered.

Barbara’s cancer diagnosis coupled with Mary’s Stage IV experience prompted Barbara to take an aggressive approach to her treatment.  She  had her ovaries and fallopian tubes removed as well as a bilateral mastectomy with DIEP reconstruction. The latter  was major surgery–a 16-hour procedure to remove both breasts and transplant abdominal fat to create new breasts. Revision surgery to create “nipples”  followed three months later as did  yet another surgery and tattooing. 

Barbara then took an aromatease inhibitor (AI) for 10 years as her doctor recommended. She had been off the AI for two years when she learned her cancer had returned.  Here’s Barbara’s story in her own words.

Barbara Bigelow learned she had metastatic breast cancer in March 2015.

I have been married to the love of my life, Tim, for almost 32 years and we have two beautiful daughters, Kelsey (25) and Bridget (24). We live in the Boston area.

I must admit that when I hit the ten-year post-diagnosis mark, I felt  distanced and more detached from the breast cancer community–I sort of put it behind me although the threat was always there, lurking in my head. It never completely goes away and my doctor never told me I was cured.

I woke up March 11, 2015 in a pile of rubble. This time my treatment team had shrunk to my elderly oncologist and his NP. Gone is the cavalry, leaving me standing alone as a treatment failure. I feel like I have somehow pissed my doc off for not staying in remission. This is compounded by the very real and very sad realization that women with recurrence like me are not a priority. We are no longer curable, people whose  pink ribbon flying days are behind them. Too dark? Yup, I get it.

Given my family history, some people have wondered if I am a carrier for the BRCA-1 or BRCA-2 mutations. I’m not–and neither are my sisters.

Others are curious how can I have breast cancer even though I no longer have “real” breasts. Good question!

Cancer is an unforgiving master that can travel, hide and mutate as it finds somewhere else in the body to take up shop–in the same spot as before, in the tissue next to the original spot, or in my case, a distant location.  BC commonly metastasizes to the bone, liver, lung and/or brain.

I must be special–my cancer  decided to pitch its tent under my right kidney, marshal and enlarge the troops until it was ready to take the hill in the form of a tumor.  I have a 3 cm solid mass in the retroperitoneum obstructing the right kidney which is now non-functioning—there is no hope of any appreciable recovery of renal functioning in that kidney. My left kidney is doing all the work.

My metastatic breast cancer diagnosis came as quite a surprise…it followed an MRI for back pain due to my spinal stenosis. If I hadn’t had that MRI, I would never have learned about the mets.

My pathology report confirmed this isn’t a new primary cancer–this is the same breast cancer subtype I had with my first diagnosis. When cancer spreads beyond the breast it is treatable but no longer curable.  I am not going to win this fight, but hopefully I will respond to treatment and win a few battles and skirmishes. I will try different treatments until the cancer figures out how to outsmart it and becomes resistant–then it’s on to another treatment–hopefully my cancer can be controlled for some good long stretches.

This time, I am blogging my experiences.  Why am I doing this? Thirteen years ago, blogging was not yet a thing and we had to e-mail interested people and it was hard. Now I can blog and create a permanent record for my kids. At this point it is easier for me to write my thoughts than it is to read a book–my concentration is shot and blogging helps me process and organize my thoughts.

As for my family– People ask me how they are doing—don’t ask me, ask them, I can’t presume to speak for them and no one really wants to hear what two sisters whisper to each other when they climb into bed together to watch TV or my husband’s anguish at a 3:00 AM panic attack. Yeah, there is that–I am composed on the outside by nature and profession but on the inside I am as dazed, confused and panicked as the next person. Anxiety has lived in me for 13 years and isn’t leaving any time soon.

I have been in denial about my cancer re-occurrence. I have buried my head in the sand, looked for every distraction and pretended it was an epic joke that the universe was playing out.

How could this really be happening to me? I can talk about it, discuss it in-depth even, but I really haven’t slowed down enough to actually feel it. It has been a lot easier to think about and question the quality of care I have been receiving from my grumpy elderly doctor than to look at myself. To get unstuck. To move forward. To feel.

The call  came at the right moment if there ever is a right moment in the cancer universe. Time for a second opinion and a new attitude. The woman on the other end of the receiver said,  “This is where you need to be, we don’t do anything but cancer and it’s a whole different ball game here.” I needed to hear that.  It’s been lonely here in the dark, not feeling like a medical team was on the case, looking out for me.

It’s hard– to transition away from the people and place that have taken care of me for so long and take the giant leap into the unknown. It just means a lot of anxiety all around even though I know intellectually this is right. It is, for me, life or death. I have to pick up my sticks, buckle in and launch into my future, whatever that is.

First we muddled our way through my former treatment center to pick up the CDs of all my scans, head to Dana Farber registration and sign many forms including my health proxy—good luck Tim, I wish you the best on that.

My new doctor is lovely. Soothing, reassuring and most of all, positive. She rubbed my back, touched my hand, listened hard, answered all our questions and for the first time, we both felt a sense of hopefulness and optimism. This is where I need to be.

She said she hoped for a long and winding road with me–of course there will be bumps but hopefully I won’t fall off a sharp corner. She wrote blood work orders, took me on as “hers”, promised to do her homework–getting my actual tissue samples from my prior oncologist. She spent a lot of time with us. It was good. Treatment stays the same for now–Pablocyclib and Letrozole. Blood counts headed south but not bad yet.

My new doctor has renewed my hope that there is a space between my present and my future–time to breathe, catch up, and get organized. Despite only 7% of money raised for breast cancer research being spent on MBC and no change in the MBC stats in 20 years, I still don’t think it’s over. For me.

I am only on my first treatment. And, now that I am well into my 3rd cycle of chemo, I feel pretty good. Actually I feel more like myself than I have since February. I’ll take it! I do not plan on going anywhere without a battle and I am determined to drag myself through the door to my future.

I will have a PET scan at the end of June. Will it be a big day? Yes, but I believe in my oncologist and the chemotherapy drugs and mostly, I believe in me.

Why is it so much harder this time? Last time around I was 13 years younger and did not yet have arthritis and spinal stenosis and menopause to get through. I had young kids that needed attention. My parents were still here and they were two more anchors to help me to get on with, and over it.

Even though I was told many times that my cancer was incurable I didn’t believe them. I felt good. I thought I beat the odds. I was going to be a bad ass Melissa Ethridge, guitar blazing, kicking its butt. Turns out not so much. So yes, I am still here trying to learn how to accept and live with the unacceptable.

However, I feel great today, the weather is perfect, and Tim is puttering around, fixing things, mumbling to himself, life is good. We are all blessed and the tender mercies are present and surround me everywhere.

Lastly, when Bridget first heard that cancer might be reappearing in our lives, her response: “Please, no more lasagna, mom, I can’t take it,” in reference to the universal food of love that so many kind and thoughtful people brought us the first time we went through this. This is what grounds me and keeps it real.

 

You can follow Barbara’s story at barbigwire.com.