Where are the survivorship studies?


The answer to the headline is that there are few. And for advocates such as Elissa Bantug, MHS, it's irritating but not surprising. Elissa, an SABCF advocate for this year's SABCS, is the program director for the Breast Cancer Survivorship Program at the Johns Hopkins Sidney Kimmel Comprehensive Cancer Center in Baltimore. She is used to some clinicians' attitude that issues after treatment are not their concern – their job is keeping the patient alive.

"Changing provider views on survivorship takes time. We all want what is best for our patients but sometimes delivering comprehensive care during treatment and throughout long-term survivorship is a challenge with many competing priorities such as time, space, manpower and money."

For Elissa, the issues post-treatment are very real and have been for eight years. After finding a lump in her breast when she was 21, Elissa had to search for more than eighteen months for a doctor who would order a mammogram for her. Her first diagnosis came at 23 in the midst of full time graduate school, work at the National Institutes of Health and motherhood to a toddler. Shortly after diagnosis, her marriage ended. Treatment left Elissa suffering from a variety of medical and psychological side effects including fatigue, sleep disturbances, menopausal symptoms, range of motion issues, weight gain, depression, and sexual dysfunction.

Then, almost exactly a year after she finished radiation, she had a recurrence in the same breast. She had been dating her current husband for only a few months and, as she says, "this one was a keeper."

Her focus, like many in the survivorship field, is getting more support from providers that encompass both medical and psychological care after treatment. Elissa uses the term "patient activation" and thinks it is critical that we give patients the necessary to tools to thrive after cancer. This includes providing education, resources, and services for issues of survivors such as sexuality, cognitive issues, fertility, neuropathy, retuning back to primary care, depression and late effects such as second cancers and cardiac issues.

"You ask most women whether their oncologist brought up sexuality and they start laughing," she says. "Doctors just don't see that as their problem."

Many providers feel that if they do not have the answers to solve the problem, it is not worth bringing up. Elissa tries to encourage providers to "open up the dialogue and at least ask patients about pertinent issues that affect their quality of life. If you do not have the answer or do not feel comfortable with these discussions, find someone in your practice that can . . . we have to do more beyond the removal of disease."

Elissa thinks survivorship should be addressed at the beginning of treatment by looking at how patients can be involved.

"I don't want to wait until patients gain 20 pounds and are eating anything they want and they quit their job because they can't get off the couch," she says. "If we give patients the right tools before treatment begins, hopefully we can minimize some of the many issues cancer can create such as weight gain, sleep issues, and physical inactivity.

To help her patients Elissa has created a number of internet educations programs inckuding videos.


Advocates fighting for the lives of those with metastatic disease


When CJ Corneliussen-James retired from the Air Force in 2003 after 24 years she was a senior intelligence officer in the Defense Prisoner of War/Missing Personnel Office where she worked to resolve the casees of missing servicemen and women still unaccounted for from the Vietnam and first Gulf Wars.

A year later, Lt. Col. Corneliussen-James was diagnosed with stage 2 breast cancer, which metastasized to her lung in 2006. After surgery that removed one lobe of her lung, CJ has been No Evidence of Disease (NED), but she knows it's a matter of time before she will face cancer again.

When she discovered the existing arsenal against metastatic breast cancer (MBC) was significantly out of proportion to the loss of life, she took action. She went on the road with her message: 30% of women who are diagnosed with early stage breast cancer become metastatic, but only 2% of funds go to metastatic disease research.

To raise more funds for research, CJ and three friends from the metastatic support group she founded, created METAvivor in 2009. Since then the nonprofit with its volunteer board has raised and awarded more than $300,000 to researchers working on metastatic disease. In 2011 they began their 30% for 30% campaign -- advocating that 30% of all cancer research funds and 30% of support activities be devoted to MBC research.

CJ is one of the Alamo Breast Cancer Foundation advocates at this year's SABCS meeting. She and METAvivor vice president Kelly Lange are eagerly following the research at SABCS hoping to see new approaches to MBC. Lange was diagnosed with Stage 1 breast cancer in 1995 at age 32. By 2000 she had multiple regional lymph nodes involved and skin metastasis on her neck. Lange, a "super responder" to Herceptin and has watched as the drug has literally eliminated the skin metastases on her neck.

"We fund grants that will ultimately transition metastatic disease from a terminal illness to a controlled illness with a good quality of life," CJ says. "We fund the start up ideas, the risky out-of-the-box ideas ... the ones that could make a significant difference. These research proposals don't stand a chance of geting picked up unless we do this."

She says that although the trials funded thus far have yielded positive results, they aren't afraid to fund trials that end up negative because that gets all the researchers off that track. The group works with a scientific advisory board of physicians and researchers and has become known as the only organization that exclusively funds metastatic research.

Lange says that since METAvivor is an all volunteer organization, they can put 100 % of fundraiser profit into research grants. "This allows us to maximize the amount of funds going into MBC research. We keep our organization afloat by applying for grants to sustain our operations."

If you want to get CJ riled just tell her how much progress has been made, which is something she often hears.

"It's just not true," she says. "Women and men with metastatic disease are still dying in large numbers and we need to fund the research that can change that fact."

For more information on to their webpage.


A city filled with passion


If passion could cure breast cancer, it would be a thing of the past. The more than 7,500 attendees at this year's SABCS have brought a lot of passion to San Antonio this week. You only have to listen to the video from Debu Tripathy, M.D., our Editor-in-Chief, about hormone therapy trials delivered today to know that the researchers are eager for any news that will help them save the lives of their patients.

Their passion is matched by the advocates, the breast cancer survivors and family who are here, whether they represent a group, a type of cancer or themselves because they want to know more to have an impact on some aspect of breast cancer.

Take Betty Sommer from Houston. She is here because her daughter Stacey can't be. Stacey died in 2010 from triple negative breast cancer at age 39, so Betty, 64, an at-home travel agent, decided she would come for Stacey and learn everything she could about triple negative breast cancer. Betty looked around for other mothers when she got here, but didn't see any. "Where are they?" she asked. "Two weeks after I buried Stacey, I was volunteering."

That was in February 2010, and now Betty has started her own nonprofit Causes for a Cure that is dedicated to raising money for cancer research.

Stacey Gaecke, Betty's daughter, died exactly one year after she was diagnosed. An elementary teacher who loved the "little ones" as her mom calls them, Stacey had two sons of her own who were 10 and 12 at the time. She was the light of her mother's life.

Betty still can't believe how fast the cancer took her daughter. Diagnosed in February, she finished treatment in October and told all her friends she was clear of cancer. Both her doctor and her mother suggested she stay away from that kind of language since the chances of recurrence had been high from diagnosis with 11 positive nodes. They were proved true so soon. On Christmas eve Stacey learned her cancer was back in multiple nodes and her liver was already very involved. What Betty has already learned from doing the advanced Project Lead offered as part of the Alamo Breast Cancer Foundation advocacy program, is that what she thought was one disease now appears to have seven subsets.

Raising funds for cancer research has become her passionate focus now. The golf tournament that helped Stacey's family last year is now helping another family through Betty's nonprofit. And Betty is looking for that place that she will make a difference near her home in Houston. She has money and energy to give and when the connection is right, she will help find answers to triple negative breast cancer. She is doing it because Stacey would have.


Giving African-American women a voice


Desiree Walker has changed her look – or that's what she tells her friends when they want to know what happened to the dreads that fell to the middle of her back for so long. Now the former Wall Street administrator spends little time on her hair and even less time travelling from her home in Harlem to Wall Street where she spent her career.

After the lumpectomy, radiation and hormonal therapy, it was business as usual as mother, wife, sister, aunt, friend and employee. But to her already busy schedule Walker added working to empower African-American women in Harlem.

It was the second diagnosis in the same breast in 2009 that gave her a literal wake up call to her mission in life.

"I woke up one morning and a voice said to check my breast, and when I looked in the mirror, I saw a lump that didn't feel right," Walker recalls. She emailed her surgeon who got her in within days. The tumor was large, and this time it was HER2 positive. She had a bilateral mastectomy, followed by chemotherapy and Herceptin.

Her dreads were gone. She had been laid off and decided to focus on educating African-American and Hispanic women in Harlem. The Witness Project of Harlem (WPH) pairs a witness role model breast cancer survivor and a lay health advisor to talk with African-American women in their churches and senior centers about early detection of breast and cervical cancers. "African-American women are caregivers and usually don't put their health first," Walker says, "because they are juggling too many responsibilities or they fear bad news and the stigma of cancer. They are taking care of their spouse or partner, the children, the grandchildren and aging parents."

"When the doctor says to come back in, they often delay. They have so much to do that they would rather not know, so when the doctor says to come back in, they don't go," she says.

Recently Walker had a woman tell her that the doctor wanted a follow up after a mammogram. However, she didn't want to go because she didn't want to know if she had cancer. And the fear of dying created anxiety about who would take care of the family.

Some women also believe that God will heal them and Western medicine isn't necessary, she says.

She also works with SHARE to educate and empower African-American and Latina women. In addition, she facilitates a support group for women of African, African-American and Caribbean heritage.

She also works with SHARE's Side by Side program where she meets with medical students and doctors to discuss communication and how to deliver bad news. She works as a peer reviewer with the Department of Defense Breast Cancer Research Program.

"My objective is to address health disparities and be present anywhere that the voice of African-American women is not being heard. I want to be that voice."

Desiree Walker


Breast cancer advocates a visible presence in San Antonio


This year's Alamo Breast Cancer Foundation (ABCF) advocates come from across the US and around the world. For the next week, the advocates, 30 women and one man, will attend the sessions of the San Antonio Breast Cancer Symposium (SABCS), the largest international gathering of clinicians and researchers that is held annually in San Antonio the first week of December.

Each of the advocates, the vast majority of whom are breast cancer survivors, represents one or more organizations where they work one or more aspects of breast cancer.

The ABCF, an all-volunteer organization that is funded through local events and individual donations, provides local outreach, runs a helpline, and represents the needs of women in the halls of the Texas legislature where they have spearheaded legislation to provide protection from discrimination due to genetic information; to cover breast reconstruction after mastectomy; to cover two days in the hospital after mastectomy surgery and to require that insurers cover costs associated with federally approved clinical trials.

But being located in the home of SABCS, the foundation has also created a unique program that educates breast cancer advocates so they might take the latest information back to their home groups and serve on national funding boards.

Sandi Stanford, president of the board of the foundation and chair of the advocate committee, says in the past 15 years that the advocate program has been in operation, more than 500 advocates have come from 41 states and 11 foreign countries.

Each advocate is assigned a specific portion of the presentation as his or her "hot topic," and a CD is created at the end of the symposium on which all advocate reports are compiled. After attending the scientific presentations, advocates go to a mentoring session at day's end when a panel of expert clinician researchers report on the most valuable or intriguing part of the day's research. Advocates can question findings and talk one on one with researchers.

Some may question why it's so important to have advocates at a meeting where the presentations are clearly for those who have a medical degree – in other words the material is hard to understand.

I think that was the attitude of many of the doctors and researchers in the early years when advocates were present, until they heard the questions coming from women who had clearly researched the topic with a vengeance brought on by a will to live.

Now, physicians see the role of the advocates as important, because as one oncologist pointed out, they ask thoughtful questions following oral presentations that would not have been aired by professional attendees. This helps clinicians and scientists see their work from the patient view while building trust and confidence on both sides.

This year SABCS advocates will be asking questions, challenging assumptions and asking for more focus on the areas close to their hearts – which for some is metastatic breast cancer.

You will be hearing from a number of the advocates and the topics they are covering in these blogs. Follow them, and ask questions to be answered in the Thursday Facebook chat. Also, consider becoming an advocate next year.