Ginny Knackmuhs: An Uncompromising Advocate

August 16, 2016

It it is never easy to share the news of another life lost to metastatic breast cancer. But it is particularly hard to let you know that our dear friend and MBCN board member Ginny Knackmuhs has died. Our sincere condolences to Ginny’s family, friends and fellow advocates.

Ginny’s accomplishments on behalf of MBCN and her fellow patients are far-ranging and enduring. She was the anchor of our website–a trusted resource for people around the world. Ginny was MBCN’s treasurer and webmaster but her reach far exceeded those official duties.

Ginny’s husband, Gary, used to refer to  us  as “your people.” If someone from MBCN or another advocacy group called the Knackmuhs’ home and he answered he would hand the phone to Ginny and say, “It’s your people.” He said all of these groups collectively reminded him of “The Five Families” as depicted in “The Godfather.” Although this wasn’t an entirely accurate assessment, in some ways Ginny was our Tom Hagen, the capo who got things done. She was a great natural leader and a woman of decisive action.

As Texans say, some people are all hat and no cattle. Not Ginny– because her treatment center didn’t have an in-person support group, Ginny helped establish one. When a national breast cancer organization overlooked people living with Stage IV breast cancer, Ginny presented the facts and asked them to re-evaluate their stance. (They did.) When the Metastatic Breast Cancer Alliance was coming together, Ginny was front and center and helped jump-start its creation.

A few years ago, an academic cancer center asked us to co-host a webinar on key issues in metastatic breast cancer. The proposed webinar was to take place in November–both Ginny and I felt that attendance would suffer because in the wake of Breast Cancer Awareness month, many people want to take a break from cancer talk. We asked our contact at the cancer center to shift the event to September or October but she said  their schedule was inflexible. Ginny was not to be denied. She politely–but firmly–said we could do it in October. And we did! I would have caved  and resigned myself to the November slot, but Ginny was made of stronger stuff.

“Ginny was the heart and soul of MBCN’s online presence,” says Shirley Mertz, MBCN’s President.  “Many visitors to MBCN.org  have expressed their gratitude to find patient-centric information.” “This is the most informative site I have been to yet,” wrote Jean M.  “Thank you for giving me a place to go, a place to get information that pertains to me.  I was moved by the many testimonials/videos.  So positive.  I found the technical section on drugs and treatments very informative – thank you for that. Also found it easy to navigate your site. It’s a great website and lots of resources, which I will be using.”

Doctors also commented on the wealth of information on the website, according to Shirley.  “This is all to Ginny’s credit,” says Shirley.  Ginny worked extremely hard on MBCN’s redesigned website which will debut shortly. It is a wonderful legacy.

ScanTreatRepeatGkMBCN has popularized the phrase “Scan, Treat, Repeat: Stage IV Needs More.” Ginny and I were talking about a motto that could be used to along with MBCN’s new logo and that is what we came up with. Ginny created the first iteration–complete with the now familiar circle and three arrows. I have seen doctors use the Scan Treat Repeat logo in their metastatic breast cancer presentations and patients quickly embraced it, too. Anyone would be proud to contribute a phrase to general usage, but Ginny has the distinction of contributing  the saying as well as boosting people’s understanding of the disease. MBC advocates often talk about “changing the breast cancer conversation.” Ginny has well and truly has done that.

Board member Deb Tincher and Conference Chair recalls, “If you attended an MBCN conference in recent years, you probably knew Ginny. As treasurer, she sent out scholarship reimbursement checks. It was an arduous and time-consuming task that required collecting surveys, expense forms and receipts from the attendees. Ginny knew many attendees are on tight budgets–she cut the reimbursement checks as quickly as possible. She was always thinking of others.”

Ginny, by her own example, pushed many of us to expect more and to do more. A couple of years ago, there was a special event in Time Square to call attention to October 13th, National Metastatic Breast Cancer Awareness Day. Ginny and I joined some other Stage IV patients and advocates on GMA’s outdoor plaza. (Ginny, true to her 1960s roots, took the precaution of taking only her ID and a small amount of cash with her. “In case we get arrested,” she explained as we walked over from our nearby hotel.)

GinnyTimeSq

Ginny with SHARE’s Christine Benjamin and me on Time Square

I thought that if we were lucky, we might get our signs on television. Ginny actually got the weather person to acknowledge the MBC delegation as well as the Awareness Day designation on national television. “Next year I want to go INSIDE the studio and be interviewed,” Ginny told me.

Ginny had lobular metastatic breast cancer (most breast cancer is ductal) and  she also had the triple negative subtype which notoriously aggressive. She did not write extensively about the specifics of her case, but MBCN would like to share some information we think she would want everyone to know.

“I was diagnosed in 1992 with early stage cancer–Stage 0 or DCIS–the earliest you can have,” Ginny wrote in this blog post. ” I had a simple mastectomy, which was considered a 100% cure, and breast reconstruction. I continued on with my life, without worrying too much about breast cancer. . . I continued for 17 years with annual mammograms, 17 years of breast self exams, 17 years of annual checkups and then I was diagnosed with advanced breast cancer with metastases to the bone–stage IV–treatable but no longer curable. I was no longer the poster girl for early detection, because this time early detection had failed me. Like many in our pink-drenched communities, I had accepted the message that early detection was the cure and that mammograms were a fail-proof screening test.”

Ginny went on to say that her breast cancer education began the day she received her Stage IV diagnosis. “I learned that mammograms are a good tool, but less effective when the woman is young and premenopausal; less effective for women with denser breast tissue; less effective at identifying aggressive cancers; susceptible to many false positives (identifying suspicious areas which turn out to be cysts or other normal anomalies); and unable to predict whether the cancers that are identified will go on to be deadly or will proceed in an indolent and unthreatening growth cycle, better left alone. The message promoted by many breast cancer organizations is one of positivity, survivorship and fighting and winning. So the actual capabilities of a screening tool have been exaggerated and early detection has become synonymous with the cure.'”

Ginny wanted her experience to have meaning. “I never want to characterize cancer as a gift,” she wrote. “I don’t think I need to endure treatments and side effects the rest of my life just to be a better person. But I’d like to believe that I have Stage IV metastatic breast cancer for a reason: to speak out about it, to educate people, to fill in the missing gaps in the breast cancer awareness messages, to dispel the ‘guilt’ myth, that this cancer is my own fault, that I failed to eat right, think positively, live well.”

She further noted that October 13 is Metastatic Breast Cancer Awareness Day. “It’s the one day in Pinktober that Metastatic Breast Cancer Network lobbied Congress for in 2009. One day to talk about the ugliness and deadliness of breast cancer, but also the promise and hope of 155,000 or more living with the disease in the US, struggling to live every day well, waiting for the next treatment to extend our lives a few months longer, hoping for a cure to finally stop metastases from occurring. . .It’s not too early to start thinking about October. I’ll be writing letters, lobbying the media, working to get the message out…”

Amen, Ginny. We will, too. 

–Katherine O’Brien, August 2016

 


Our Feel-Good War on Breast Cancer: MBCN Responds

April 27, 2013

Tony Cenicola/The New York Times; Gabrielle Plucknette/The New York Times (umbrella, socks, oven mitt); A.J. Mast/Associated Press; Nam Y. Huh/Associated Press; Kyle Kurlick/The Commercial Appeal, via Associated Press; Dr. Scott M. Lieberman/Associated Press

By Katherine O’Brien, MBCN Secretary

Editor’s Note: Peggy Orenstein’s April 25, 2013 article–the cover story for this Sunday’ s New York Times’ Magazine, demonstrates a remarkable depth and thoughtfulness. It is long–but well-worth the effort to read. For those looking for a quick overview, we’ve prepared the following summary and added our observations where appropriate. We hope it will aid readers’ understanding of this important article as well as prompt further discussions. Please share your insights in the comment section below.

Initial Treatment and Recurrence | Journalist Peggy Orenstein wrote “Our Feel-Good War on Breast Cancer,”   subtitled “The battle for awareness has been won. So why aren’t more lives being saved?” Orenstein frames the article within her own breast cancer experience.  Sixteen years ago at 35, Orenstein had a screening mammogram that revealed early stage breast cancer. Her treatment, at that time, was a lumpectomy, as well as six weeks of radiation.

In 2012, at age 52, Orenstein had a nonmetastatic recurrence. She found the lump herself, nine months after her annual mammogram. Because of her prior treatment, Orenstein’s doctor recommended a unilateral mastectomy as well as Tamoxifen.

Early Detection Doubts | In 1996, at the time of her first diagnosis,  Orenstein credited her screening mammogram with saving her life. (“I considered myself a loud-and-proud example of the benefits of early detection,” she writes.) In 2013, following  the cancer’s recurrence, she has changed her mind.

Orenstein  details the US screening mammogram debate. The popular perception,  fueled in part by some nonprofits and pink-ribbon themed efforts,  is that screening mammograms save lives. Evidence of actual mortality reduction is, in fact, conflicting and continues to be questioned by scientists, policy makers and members of the public. According to Orenstein:

“Mammograms, it turns out, are not so great at detecting the most lethal forms of disease — like triple negative — at a treatable phase. Aggressive tumors progress too quickly, often cropping up between mammograms. Even catching them “early,” while they are still small, can be too late: they have already metastasized. That may explain why there has been no decrease in the incidence of metastatic cancer since the introduction of screening.”

We Say: This article can be summed up in one sentence: “Early Detection is Not a Cure.” Metastatic breast cancer can occur 5, 10,  15 or even 20 years after a person’s original diagnosis and successful treatment checkups and annual mammograms.

Overtreatment | Orenstein explains that  breast cancer isn’t a single disease. But early mammography trials were conducted before variations in cancer were recognized: “before Herceptin, before hormonal therapy, even before the widespread use of chemotherapy.” She then raises the question of overtreatment. Dartmouth’s Gilbert Welch  co-authored a study that estimates that only 3 to 13 percent of women whose cancer was detected by mammograms actually benefited from the test.

We Say: We agree with author and patient advocate Musa Mayer who says: “If we had spent a fraction of the dollars devoted to promoting screening on research to determine which DCIS lesions and tiny invasive breast cancers actually need treatment beyond surgery, and which do not, we’d be way ahead now.” Without knowing which tumors will metastasize, we must treat all of them alike. Worse, “good” mammograms may give some women a false sense of security.

DCIS Dilemma | The article says mammograms and improved imaging technology have resulted in a dramatic increase in the number of people diagnosed with ductal carcinoma in situ (D.C.I.S.),  in which abnormal cells are found in the lining of the milk-producing ducts. DCIS and the less common lobular carcinoma in situ account for about a quarter of new breast-cancer cases — some 60,000 a year. “D.C.I.S. survivors are celebrated at pink-ribbon events as triumphs of early detection,” writes Orenstein. “Theirs was an easily treatable disease with a nearly 100 percent 10-year survival rate.”

We Say: One of our few quibbles with this article is its depiction of DCIS. We agree that most DCIS is successfully treated. But  the article cites an expert who says DCIS is “not cancer but a risk factor.”  This statement creates the overall impression is that DCIS is not a big deal. Again, in most cases DCIS does NOT go on to become invasive breast cancer, but unfortunately it can and does.

Confusing Statistics |  Orenstein say that the Komen organization, a mammogram/early detection proponent,  has been accused of citing deceptive five-year survival rates. Since these allegations first surfaced, Komen has stopped using the statistic in question.

We Say: NBCC does an excellent job of addressing this common misperception:

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 survival for early stage breast cancer is 98 percent.

This is only a 5-year survival number—and includes the 20-30 percent of women who will have recurrence and may die of the disease later. . . Women die of metastatic disease, not primary breast cancer.

Incidence has risen during the past 20 years from 1 in 11 to 1 in 8, it’s now leveling off; mortality has declined slightly but a key point is incidence of stage IV breast cancer—the cancer that is lethal—has stayed the same; screening and improved treatment has not changed this.
Source: http://www.breastcancerdeadline2020.org/get-involved/tools-and-resources/toolkit/resources-and-tools-for-advocates

We Can’t Manage What We Don’t Measure: When will we start collecting meaningful statistics on metastatic breast cancer recurrence?  US cancer registry data captures data at the time of diagnosis and death. The registries don’t track what happens in between.

As Orenstein notes, 30% of those originally diagnosed with early stage breast cancer will have a metastatic recurrence. But this information is not tracked–until people die:

  • NCI and SEER database 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 say that there are 150,000 US people currently living with metastatic breast cancer, but that’s basically a guess.
  • We know for sure that 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.

Funding Research | We need more metastatic breast cancer research. Orenstein confirms what MBCN and METAvivor have said for years. Metastatic breast cancer research is appallingly underfunded:

According to a Fortune magazine analysis, only an estimated .5 percent of all National Cancer Institute grants since 1972 focus on metastasis; out of more than $2.2 billion dollars raised over the last six years, Komen has dedicated $79 million to such research — a lot of money, to be sure, but a mere 3.6 percent of its total budget during that period.

There’s also the intertwined issue of funding research for the prevention of metastatic breast cancer vs. treatments that will extend the lives of those currently living with the disease:

“A lot of people are under the notion that metastatic work is a waste of time,” said Danny Welch, chairman of the department of cancer biology at the University of Kansas Cancer Center, “because all we have to do is prevent cancer in the first place. The problem is, we still don’t even know what causes cancer. I’d prefer to prevent it completely too, but to put it crassly, that’s throwing a bunch of people under the bus right now.”

We Say: MBCN’s slogan is “Fighting for Treatments to Extend Life.” So we appreciate Welch’s candor and dedication.  And, if we want to prevent metastasis, we may need to rethink our current approach to clinical trials.  During last year’s annual Metastatic Breast Cancer Conference, NIH’s Dr. Patricia  Steeg made a case for redesigning clinical trials to do what she termed “phase II randomized metastasis-prevention trials.” Currently, phase I and phase II clinical trials are done in patients with advanced, refractory metastatic cancer, patients who have had many therapies. In phase II trials, researchers typically are trying to determine if a drug shrinks metastases.“But a drug that prevents metastasis may not shrink a large, refractory tumor,” said Steeg. “It has a different mechanism of action that is not picked up by the clinical trial system.”

Know The  Breast Cancer Facts | In her final paragraphs, Orenstein says we may have more breast cancer “awareness” but this “awareness” is fundamentally flawed: “All that well-meaning awareness has ultimately made women less conscious of the facts: obscuring the limits of screening, conflating risk with disease, compromising our decisions about health care, celebrating “cancer survivors” who may have never required treating. And ultimately, it has come at the expense of those whose lives are most at risk.”

We Say: Nicely done, Peggy. We’d be honored if you would join us at our 2013 Annual Metastatic Breast Cancer Conference, Sept. 21 at MD Anderson in Houston!

NMBCAD logo black smallMark Your Calendar: Peggy Orenstein’s article will go a long way in helping people understand breast cancer. As women living with metastatic breast cancer, we are committed to educating people about this disease. This article is a good start, but our reality remains poorly understood. That is why MBCN fought to establish  Oct. 13 as National Metastatic Breast Cancer Awareness Day. 

Let’s Keep Talking: On her Facebook post announcing the publication of this article, Orenstein said she hopes it will change the national conversation about breast cancer. We hope so, too. Peggy started the dialogue. Won’t you help us continue it?

4/29/2013 Editor’s Note: This copy has been revised to remove a disputed statistic concerning Stage II and Stage III metastatic recurrence, material that was directly quoted, as indicated,  from http://www.breastcancerdeadline2020.org/get-involved/tools-and-resources/toolkit/resources-and-tools-for-advocates. We will provide additional clarification if available.

4/30/2013 Editor’s Note: As noted above, we removed a disputed statistic we originally quoted from this site after some reader’s questioned its accuracy. [That sentence read in part: For Stage II and III, one-half to two-thirds will develop metastatic disease…] A Google search suggested the statistic came from one of advocate Musa Mayer’s articles. We asked her to comment, and with her permission, share her response. Musa writes:

“I can see I am indeed the source of this statistic, or rather what I wrote in the introductory section of “Silent Voices,” which was written in 2005.  I did get this quote from a text on breast cancer published in 1999, edited by Daniel Roses.  The figures come from an article on the treatment of metastatic breast cancer by Ruth Oratz, an NYU oncologist, written during the era when bone marrow transplants were still being investigated.  I think there may have been an earlier edition.

“There have been a few major advances in the adjuvant treatment of early breast cancer in the last 8 years, principally the use of adjuvant Herceptin, which has reduced recurrence by at least 50% in HER2+ disease, once considered among the deadliest subtype.  The use of adjuvant taxanes with AC regimens in triple-negative breast cancers has also reduced recurrence during these years.  Hormonal treatments have improved in a more incremental way, with the use of the aromatase inhibitors.  So all in all, I believe you can say that for women with non-metastatic disease, the outlook is better than it was even a decade ago.

“Just how much better?  It’s really hard to tell until the numbers mature over time, as we know recurrences can happen later now that more aggressive adjuvant treatment is in use.   The National Cancer Institute’s SEER database shows a steady increase in survival over time, looking at all invasive breast cancers.  For example, 1990 10-year survival was 77%, while in 2000 it was 84%.   But survival figures don’t necessarily represent significant gains, as they are distorted by the overdiagnosis of Stage I breast cancers, which have increased five-fold since the advent of mammography in the 1980’s.

“The numbers are very different in different populations, with low socioeconomic status (hence poor access to care) and African American race predicting higher mortality.  In fact the disparities in survival and mortality have only become greater as more effective treatments are introduced.

“The annual mortality rates for breast cancer, age-adjusted, per 100,000, which DO give an accurate picture of progress, have decreased from 33.1 in 1990 to 27.6 in 2000 to 21.9 in 2010.  That’s a decrease of about one third over 20 years.  Not large, but not trivial, either.”

Source: email correspondence with Musa Mayer