Senate Amendment Threatens DOD Breast Cancer Research Program (DOD BCRP)

US Capitol Dome Houses of Congress Washington DC

TAKE ACTION!

The Senate is currently considering the National Defense Authorization Act for Fiscal Year 2016 (HR 1735). Sen. John McCain (R-AZ) has filed an amendment (#1483) that if passed, would severely restrict the types of medical research that could be funded by the Department of Defense and would serve a devastating blow to DOD funding for Breast Cancer Research. Contact your Senators and urge them to oppose McCain amendment #1482.

Sourced through Scoop.it from: advocates-for-breast-cancer.rallycongress.com

To see the bill H.R. 1735 go to: https://www.congress.gov/bill/114th-congress/house-bill/1735/text

To see HR 1483 go to: https://www.congress.gov/amendment/114th-congress/senate-amendment/1463/text

TAKE ACTION:   http://advocates-for-breast-cancer.rallycongress.com/18000/senate-amendment-threatens-dod-breast-cancer-research-program-dod/

This is a pre-written letter that you can send to let your Senators know how important it is that we don’t lose funding for the very successful Breast Cancer Research Program. funded by the Department of Defense. It only takes a minute to put your name and address in and your email will be sent to Congress.

See on Scoop.it – Breast Cancer News

Hope from the NBCC Deadline 2020 Advocate Summit and Lobby Day

As I returned home from the NBCC (National Breast Cancer Coalition) Advocates Summit and Lobby Day to end Breast Cancer Deadline 2020, I was really happy I went. I have to admit I had so many reservations going. I labored over my decision. I thought I was going to fly home with “Frustration – Part Two.” There’s been a lot of people angry with the NBCC because of issues about putting MBC (Metastatic Breast Cancer) under the bus literally. My fearless friends have real reasons to be upset. Here is an organization that has educated so many women who have had to hear the words “You or a loved one has breast cancer.” They have an incredible program called Project LEAD which is an intensive six-day course teaching the science and very important advocate issues about breast cancer.

I have learned a great deal from Project LEAD, LEADcasts, summits and attending Breast Cancer Symposiums that stemmed from first learning with the NBCC about breast cancer. Great scientists, researchers, doctors and leaders of breast cancer advocacy taught me the grim statistics that now in the US alone 108 women die a day of MBC (metastatic breast cancer). That’s one woman every 14 minutes. There are also men but the stats are less. In 1975 there were 112 deaths a day in the US from MBC. It’s 2013. Four less deaths a day is not much progress when it comes to death rates.

So here was my dilemma. The NBCC who taught us about the death rates has a campaign to end breast cancer in 2020. So what happens to the metastatic patient while they figure out how to get a vaccine to end breast cancer?

There has been a lot of differences of opinion within the breast cancer community and understandably so. If you are only preventing breast cancer and preventing metastatic breast cancer what of the person diagnosed as metastatic. The very people they say they are helping…Are they really helping them?

I went to symposium expecting to come home finished with them. But my mind was open. I saw that Musa Meyer was going to the conference. She is the head of the advanced metastatic breast cancer organization. She is committed to the advanced breast cancer community and through her website http://www.advancedbc.org and the BCMets,org online community Musa focuses daily with BCMETS.org by helping women with MBC and their families understand treatment options and emerging research.

There was also an impressive line up of speakers. Dr Dennis Slamon gave a great talk. He is best known for being instrumental in the identification of the Her2/neu oncogene and the resulting treatment of tratusunab (Herceptin) which has been hailed as the first triumph in an emerging wave of targeted therapies. Some other speakers included Dr. Susan Love, Dr. Michael Baum, Dr. Peter Lee, and Dr. Barrett Kramer to name a few. In my next post I will be writing more about what some of these speakers spoke about.

Shirley Mertz of the MBCN (Metastatic Breast Cancer Network) was also at the conference. If leading metastatic breast cancer patients and their organizations were getting behind the deadline, and I have always supported the NBCC, I owed it to myself and Advocates for Breast Cancer to attend and make up my mind.

The most moving plenary session I attended was called “Effectively Targeting Metastasis in Breast Cancer.” First Shirley Mertz spoke to us, endorsing Deadline 2020. She talked about the differences between early stage breast cancer patients and MBC. 80-90% of all breast cancer patients start at early stage breast cancer. Early stage can be anything from DCIS (ductal carcinoma in situ) which is pre-cancer and a little more complicated but for this post I will leave the explanation as that. Early stage cancer can also be cancer that is contained in the breast where someone might only need a lumpectomy or a mastectomy and/or radiation depending on the size of the tumor and whether there is lymph node involvement. Otherwise another early stage breast cancer is when the cancer travels to the lymph nodes and the patient could have a lumpectomy, chemotherapy and/or radiation and/or a mastectomy but the most important thing to understand about early stage is that one is told they have a 70% chance of survival and many do whatever treatments that are recommended or they feel will work and after treatment some prescribed medications depending on their pathology. Some also choose alternative therapies. For most early stage patients, when they “finish primary treatment”  and are told they have NED (No Evidence of Disease) they can have the chance of knowing they may be “cured.” Then they are told they have a 30% chance of a metastatic recurrence that can happen at any time, but at least there is an end point to the treatment. Of course there are many side effects and I am oversimplifying “treatment” as an end point but I am trying to show the differences between early stage breast cancer and MBC. MBC is chronic and so far there is no known “cure”.

Shirley explained about how she goes for chemotherapy infusions and where she goes there are early stage patients getting chemo and when they get their last treatment they have a special bell and everyone celebrates their end point of chemotherapy treatment. When one has metastatic breast cancer there is no end point to treatment so Shirley remembers the joy of knowing there was an end point but unfortunately for the MBC patient this will never happen. There are also people with inflammatory breast cancer which is an unbelievably aggressive form of breast cancer that many do not survive. Again for simplicity I am just trying to show the many differences that exist in breast cancer diagnosis and treatment options.

After Shirley Mertz, Suzanne Faqua PHD continued talking with us about the science involved and critical issues in metastasis research. Suzanne is a professor in the Lester and Sue Smith Breast Center at the Baylor College of Medicine. She specializes in metastatic research especially working with hormone positive MBC.

She explained the way current science recognizes the need to study not only the primary tumor but looking at the similarities and differences of the heterogeneity of a metastatic tumor. As we look at the critical issues in metastatic research our approach is important. For optimal targeted therapy we must identify key pathways (key drivers), block the pathway completely, anticipate escape mechanisms and block them too, and explore combination therapy. She talked about studies related to PIK3CA status in blood, liquid biopsies, circulating tumor cells and how we must do targeted therapies in human trials. Her talk had some of the complicated science involved with tumor dormancy, including the fact that there aren’t current dormancy-cell killing drugs in clinical trials. This needs to change.

Some of her personal perspective of the critical issues in metastasis research includes the need for us to get the pace moving. We have to change the dogma that “The horse is out of the barn” so we can prevent metastasis. There is a lack of clear “drivers” to target. Suzanne also spoke about how important it is to now understand the metastatic tumors and be able to collect tissue samples from biopsies of metastatic tumors and analyze them. Apparently there is a problem within the research community where the researchers want to study the tissue samples from metastatic tumors and how there is difficulty getting theses samples. The woman sitting next to me said she gave her samples and is disappointed that researchers aren’t getting their samples. Another problem is funding. Negative funding will slow and halt progress. That’s why Lobby Day was so important and we also need to keep the program at the DOD (Department of Defense) going so we continue vital research especially when it comes to metastasis.

The NBCC is going to have a special meeting in June with scientists, doctors and metastatic breast cancer patient advocates to study metastatic breast cancer and tumor dormancy. The science is complicated. But someone explained to me that the basics are if the scientists can take the metastatic patients and get their metastatic tumors to go back to sleep and not spread any further, they can go on to live with the disease for many years. The best way I can understand and explain it is that with AIDS they have not found “the cure” but they have found medications that allow people to continue to live with AIDS and they can live for a very long time.

This information is very important to me. I know I have written about the death of my best friend from MBC who survived and thrived through primary chemo with me and lived as long as she could with triple negative MBC. I have so many friends with metastatic breast cancer now, and met some really special new friends at the conference and I have written about how upset I am that they need to have more money dedicated to metastatic research.

One of the difficult things in the breast cancer world is that different organizations have different agendas. Sometimes there are clashes. I am someone who wants everyone to work together. I believe in teamwork. It is the spirit of teamwork that helps me understand the mistakes of the past with breast cancer and pink culture yet try to move forward with my advocacy.

This is what I gained from the people who are committed to deadline 2020. Advocates are working in every way they can to see an end to this disease so that we don’t have to have our sons and daughters hear the words “you or a loved one has breast cancer.”

I understand that some people are moving on from the NBCC and others like me and many of my new friends that I met in DC are supporting the NBCC. For those that don’t want to support them, please know I understand your point of view and I am not going to tell anyone they have to feel the same as I do. This was my experience at the conference. This is what I went away feeling that I am doing what I believe is right for myself and my organization. I am passionate about my advocacy and making a difference with breast cancer and nothing will change that. I hope that one day this horrible disease can be contained and women can go on to live happy productive lives with the most quality of life that they can as result of the scars that come with this disease.

I respect that others see some of what the NBCC is doing with a different lens. When it comes to our passion and intentions, we are all on the same side. What is most important is that we respect each other and work towards ending this disease in every form while we continue to place much emphasis on metastatic research.

Setting a deadline is always a good idea to set goals and try to reach them. Had we never set a goal to get a man on the moon we never would have footage of Neil Armstrong stepping on the moon and saying the famous words, “One small step for a man, one giant leap for mankind.”

Lobby Day was also important to get bipartisan agreement and congressional representatives to sign “The Accelerating the End of Breast Cancer Act”, H.R. 1830, and that we continued to get the funding support for the Peer-Reviewed Department of Defense Breast Cancer Research Program (BCRP).

I also met some amazing new fearless friends many who currently are metastatic and have such interesting stories. As we all know it is our unique stories that move us to understand more about this horrible disease and fuels us to do whatever we can to help one another in this land of cancer.

I am so glad I went to DC and came back with all of this hope as well as meeting great new friends. The Summit was so much at once and my only criticism is that they packed in so much that we didn’t even have a break during meals because there were speeches and meetings during the whole time. Even though it was exhausting, the Summit was really worth it. Hope is a great thing to have in our lives.

Why I Care so much about Breast Cancer Advocacy

I am finally ready to start writing about how much breast cancer has made an impact on my life. I kept a journal for seven and a half years writing monthly about what was happening around me after finding out I had breast cancer. There is so much work I have yet to do to like working with other patient advocates to see an end to this disease.  You can also read a condensed version about my history with breast cancer in my blog.

If you are reading this, you probably have had breast cancer, still have breast cancer, have a family history of breast cancer, or have been affected by the disease. If you’re a survivor, you know this disease is not just a sea of beautiful pink. I wish it were because I love the color pink. It’s such a happy color. In this blog I am not going to get in to the “pink-washing” of breast cancer, but anyone touched by the disease knows it’s not a pretty picture.

I was fortunate in joining the National Breast Cancer Coalition (NBCC) and if you haven’t heard about them you should go to http://www.stopbreastcancer.org (after you read my blog), and see what they are all about. I am so inspired by the president Fran Visco and her vision of seeing an end to breast cancer by 2020.  The NBCC also realizes that to help eradicate breast cancer, patient advocates need to be well educated about the disease.

The NBCC has special classes to train new advocates. I am proud to say that I am a LEAD Graduate where I learned so much from incredibly well-respected doctors in the medical community and speakers including people who work at the National Cancer Institute. In 2011, I took the Project LEAD Workshop which consisted of six days learning about he science of breast cancer, Rna, DNA, assays, statistics, pathology, chemo regimens, injecting mice with breast cancer, fat glands, clinical trials, radiation, advocacy, how the news gets it wrong, what is myth and what is fact, the future of breast cancer, the Artemis Project, (where scientists, doctors, researchers, and patient advocates are working on a vaccine to prevent breast cancer), genetics, types of breast cancer, tests, questioning  what you read or hear about breast cancer, health care, advocacy, and so much more. They gave us thick notebooks of articles, abstracts, definitions, copies of slide presentations, and more paper to take notes. It was so exciting to speak after the lectures with people like Dr. Diane Palmieri from the National Cancer Institute and be able to talk to someone who is working in the lab to help end breast cancer since I have been physically going through treatment of the disease. We even had a visit from Dr. Susan Love who wrote  “Dr Susan Loves Breast Book” which most breast cancer survivors consider the Breast Cancer Bible. She is fascinating to speak with and she is so knowledgeable about breast cancer.

The NBCC helped me to become an educated advocate learning as much as possible about breast cancer. As a result I attended the Asco Breast Cancer Symposium and two San Antonio Breast Cancer Symposiums where leading doctors in the field talk about the science of breast cancer, clinical trials, abstracts, patient cases, and so much more. I was also able to go to Washington DC two years in a row with the NBCC to meet with congressional members from my state, to get money appropriated by the Department of Defense, and sign a congressional letter talking about ending breast cancer in 2020.  I will talk about this in much more detail in another blog. Because I have had breast cancer, know other breast cancer survivors, watched my best friend die of breast cancer,  have other friends who are either going through primary treatment or have breast cancer that has metastasized, I am passionate about making advocates4breastcancer.org an organization that will help current patient’s lives and help bring an end to breast cancer.

To increase our visibility to other breast cancer patients and advocates, we are in the process of developing a web site named advocatess4breastcancer.org or a4bc.org. Watching special friends who are experiencing breast cancer that has metastasized  (or mets as we call it, which means the cancer has spread to other parts of their bodies), is very difficult. These are the people we want to help as much as we can. The deadline is too late for them. All they have are toxic chemo drugs that can for a time slow the spread of the disease and possibly even get rid of tumors, but once the cancer has spread it most likely will come back.

Our non-profit is devoted to making sure that they are not “the forgotten ones”. At this time no one  knows how to reverse mets, nor how to destroy mets so they do not return.  Yes, some chemo drugs can shrink tumors and they can hold them at bay, but they can’t erase them forever without them coming back. Our goal is to do everything in our power to help discover and fund research that can destroy mets permanently and end breast cancer.

To read more about the organization, please click on the “About Us” tab.