Testing #Scanxiety

Anyone touched by cancer knows about testing Scanxiety. You don’t want catastrophic thoughts running through your mind.

It’s been a slow process of testing, fuzzy thinking, difficult concentration, pain, and symptoms piling on over the past few months. I’m mostly disappointed that I’m less productive.

It started with pain in my right ribs. Then there was more pain on my right breast that recently extended to my back ribs too. I’ve had X-rays, MRI without contrast, and most recently a bone scan. Each time I hear results of no mets I’m extremely grateful.

I’ve had early stage breast cancer twice, chemotherapy, radiation, lots of breast surgeries including a mastectomy with reconstruction. Everyone knows how passionate I am to see that we do everything to extend lives with quality of life and find a cure for Stage IV.

Testing Scan 2Just when I thought all was clear I got a call from my oncologist that after further inspection there is a suspicious spot on my spine at T8. Tomorrow they do an MRI with contrast on my spine and see if a biopsy is warranted.

I could use good thoughts and prayers.

While I feel fear, I refuse to let it run my life, (easier said than done) especially when there’s so much I am grateful for including all the incredible support around me.

 

______________________________________________________

Click for  Update on Scans  It’s great news!great_news_clipart_-_Google_Search_-_2016-02-06_09.49.49

A4BC at SABCS 2015

We are pleased to announce the success of our newly implemented scholarship program. We awarded two amazing women, Jennie Grimes and Grazia De Michele paid scholarships thanks to our generous donors at Advocates for Breast Cancer (A4BC).

Jennie Grimes Susan Zager grazia
Jennie Grimes, Susan Zager and Grazia De Michelle

Grazia De Michelle – an Italian born woman currently living in the UK.was diagnosed with breast cancer in 2010, at the age of 30, and has been a patient advocate ever since. She was treated in Italy where, unlike the United States, breast cancer advocacy is still in its infancy and the level of patients’ engagement with researchers and healthcare providers is low. As a result, at the end of active treatment, in 2012,  Grazia started  her blog, Le Amazzoni Furiose (The Furious Amazons), to promote Italian women’s involvement in the international debate on breast cancer. A year later, she joined the Breast Cancer Consortium, a network of scholars and advocates interested in breast cancer, critical health-literacy and evidence-base medicine founded by medical sociologist Gayle Sulik.

Jennie Grimes – a metastatic breast cancer (MBC) patient is literally dying for a cure. She is 35 years old, going through a rough time because there are limited choices of drugs to keep her alive. She asked the professionals at #SABCS15, “please keep me alive.” My heart is breaking because I wish there was more available for her and so many others dying of stage IV breast cancer.
Metup_Dying_for_a_CureMetup_Dying_for_a_Cure_-_2015-12-24_12.51.05Phyllis_(@Groz_P)_Twitter_-_2015-12-27_13.15.18The most exciting part of the symposium was (A4BC) joining with other organizations that are working toward the same mission.  We met with Beth Caldwell, mother, wife, cancer patient, METUP co-founder, and blogger. Meeting people that we know through social media and being able to interact with them is so meaningful because we are able to join forces to save lives. We also met Corrie Painter PHD who along with NiKhil Wagle, MD is working on the MBCProject.org. They believe in sharing the data. This is a whole new way of approaching research.

The_Metastatic_Breast_Cancer_Project_-_2015-12-24_12.58.27
 Learn More at: http://www.MBCProject.org

The truth is that when it comes to breast cancer, we are in an epidemic. Over 40,000 women and 400 men die each year in the U.S. alone from Metastatic Breast Cancer. This is the same number of deaths in the U.S. that occurred during the height of the AIDS epidemic. So while many breast cancer organizations use pink marketing to raise money for a cure, the reality is they just keep saturating the public with the idea that breast cancer is a pretty pink disease with survivors.

(5)_Beth_Caldwell_-_2015-12-28_08.01.55.png

People mean well. But they don’t understand that living with MBC has nothing to do with whether the person “fights hard enough.”

Many people did not understand why we are demanding that Stage IV needs more focus; too many women (and some men) are dying. What we’ve done in 25 years has not had much impact on the death rates. We must prioritize our efforts to save lives.IMG_1713

If we could finally understand why someone gets breast cancer, like we understand how AIDS is spread, it would be a huge help towards finding life saving treatments and prevention.

Donate Graphic 6-25-15

If you want to be part of the work we are doing at Advocates for Breast Cancer, please consider giving a tax free donation. We have a new donation page on our site. We are so grateful to our donors and supporters. Wishing you peace, health, love and happy holidays! đź’ťđź’–đź’ťđź’–

 

I am in Free Fall but Determined to Climb out of Depression

joyIt’s been the most difficult New Year that I have ever experienced. On a personal level I am trying to approach this year with ease and joy. It’s been two years since Li died and I am drowning in depression. Not sure whether anything I am doing is worth anything. I have never worked so hard without feeling any reward. When I was volunteering at least I felt worthwhile every day helping people right in front of me. I have so many important friends on social media and I have been so fortunate to meet so many special people as a result, but sometimes it’s so hard to keep up with all the information especially as I try to simplify everything.

Meanwhile my very close friend has brain mets and just finished whole brain radiation and it’s just so unfair. I wish the treatment wasn’t so tiring for her. I am so grateful for her friendship and I try to do whatever I can to help but she just doesn’t deserve to be going through all of this. I am glad that we live close to each other and I love getting together especially walking with my dog Shelby to visit.

Twitter : justvisiting123: Why isn't @Jada_FA on the cover ... 2014-02-11 15-01-24Jada my friend on Twitter died at age 34. I only knew her through Twitter. She touched so many of us in the breast cancer social media community. She was so young and beautiful. Here is a stunning picture of her pre-cancer. I did some calculations (hoping my chemobrain math is still working) starting with the fact that there are 450,000 deaths a year from metastatic breast cancer (Source: GLOBOCAN 2008), I calculated that Jada is one of the 1238 people all over the world that died on Jan 28th because of Metastatic Breast Cancer. That’s over 51 deaths every hour.

Pancreatic Cancer Action wish I had breast cancer copy

People have other cancers that are just as important. Yet the Official Pancreatic Cancer Action (PCA) came out with an ad campaign with a bald women’s picture saying, “I wish I had breast cancer.” Many of us connected with social media were outraged. The PCA really doesn’t understand breast cancer statistics. The pancreatic ad also made me sad. My dad died from pancreatic cancer and I know that the disease is usually caught at Stage !V. I did some calculations and discovered that about 22 people die a day from pancreatic cancer in the UK while about 32 women die a day from breast cancer in the UK. I know they wanted to raise awareness for pancreatic cancer but I wish they would come up with a new ad and really raise awareness. Once again we need to be united when it comes to all cancers.

Tamoxifen Brain_1379462921276_3014655_ver1.0_640_480On a personal note I am thinking that maybe it’s the medicine I am taking that is making me extra depressed. I took the awful tamoxifen for five years. Now with the ATLAS and aTTom studies at ASCO 2013, they are recommending taking tamoxifen for ten years instead of five. My oncologist suggested I try raloxifene (Evista) which is supposed to be a “tamoxifen light.” When I first took it, I was amazed that there were no side effects.  But during my third month on it, I started getting non-stop hot flashes again, blurry vision, and feeling horribly depressed.

I am ER+, PR-, Her 2-.  Every study I have read about tamoxifen (for example: http://jco.ascopubs.org/content/23/4/931.long) and PR- when ER+ states that this is known to be resistant to tamoxifen. In San Antonio sitting next to Dr Dana I appreciated when she pointed to the speaker who I believe was Jason S. Carroll, PhD right as he said “ER+/PR- responds poorly to tamoxifen.” Thank you Dr. Dana for acknowledging the research I discussed with you about this, because I have heard different opinions from doctors. Unfortunately the data presented didn’t have the study published. I have suffered with this stupid drug especially being spooked by a recurrence of my breast cancer after not taking the tamoxifen.

Breast-cancer-revelation-other-hormone-receptors-could-be-targeted-for-novel-therapiesI apologize for those who don’t know theses technical things about breast cancer and to those who do since only 3-5% of cases are ER+ PR-. and there are very few studies since it’s not common. I miss being able to talk about all of this with Li. We loved discovering all the important information related to our cases. Because she was triple negative early on we didn’t understand that treatment options are limited. When she started hospice we both laughed at how much we thought we understood about breast cancer at the beginning when we went through chemo together. We both realized how little we knew until this disease took over our lives.

2225The official Advocates 4 Breast Cancer website is coming together, yet we hit an unfortunate snag. Without getting too detailed, we needed to change the domain hosting company to get ready to launch the new site. Our emails had to go with the domain server and due to technical issues some emails were lost and lots of time was spent on the issue. The problem took a huge chunk of time glued to the phone and computer with support, with lost emails and all sorts of computer issues. Today a miracle happened and after having the engineers look in to the issue, crossing my fingers, I put the settings in and the current mail is working. I apologize to everyone who may have tried to contact me and thought I didn’t respond due to having my email missing.

So to recap. I got very depressed taking a medication hoping to avoid another breast cancer recurrence that I am not sure can help me anyway. With research and a note to my oncologist, I just stopped taking the medicine. Now I hate having to consider taking an antidepressant and I hope the new one works. That’s the problem with medications. Each one causes the need for another one and then it goes on and on. I have had problems with many ones I’ve tried because they made me sick.

no-health-insurance-5Time has been lost over these technical problems with the web site. So please bear with us as we iron out issues.I personally have to make going to the gym a priority and make sure I am taking care of myself. It’s so hard with so many problems all over me. I also have to do another surgery on my breast in a few weeks. I could start another rant about my health insurance especially because it’s gone up 40% in price over the past few years including a recent 15% hike. It’s frustrating financially, time-consuming and I know I am not alone. Scorchy wrote a post that had me in tears about her issues and the financial drain called The Road to Ruin. Yet I am so grateful that I have insurance and my awesome plastic surgeon accepts it. She has fixed some previously botched work. This will be my ninth surgery on my breast, but I am lucky I tolerate surgery very well and I trust Dr. La Via. I  love my docs.

PIIS1470204509703201.fx1.smlI am very upset about my close friend’s metastatic cancer and brain mets. I am grateful that she still keeps me laughing even through difficult circumstances. She is amazing. I luckily have lots of support from family and friends and I know that what I mostly need to do is breathe and appreciate things that really matter. I think the hardest part is feeling no control over outside events. It’s such a combination of frustrating events and I just have to pass through this, one step at a time. With all that is going on I know that I must make the most out of every day and not let these things drag me down.

It’s so important to be in the moment and find daily joy in things. So with that in mind I remind everyone reading and myself that sometimes things can get overwhelming. I will trust that everything will sort itself out and try to find joy in things again. It’s best to allow myself to understand that’s all I can do is keep going and know that things will get better.

IMG_5794Luckily I have Shelby and she is a great source of joy in my life. I thank Li every day for the gift of Shelby. I made a silly movie trailer of Shelby with my iMovie program that makes me smile. I couldn’t get the program to make things perfect, but that’s OK. I have to let go of being a perfectionist. I hope it makes you smile.

San Antonio Breast Cancer Symposium – A Patient Advocate’s POV

SABCS-2013It was extremely exciting being at the 36th annual Breast Cancer Symposium in San Antonio (SABCS). I was hoping to go on Twitter during the Symposium but was having a lot of trouble during the conference with the wifi signal. I decided to concentrate on the presentations and when I could find information being reported on them I knew that those that could not hear the presentations live wanted to know what was happening there. All of the speakers were incredible. There are tons of studies that were reported in the news that I tried to “scoop” as many as I could at: Breast Cancer News.

ChemoBrain1As much as I try to deny that there is any left over chemobrain from the dose-dense ACT (Adriamycin, Cytoxan, Taxol) chemotherapy that I did for treatment of my primary breast cancer in 2005, I have to admit that as much as I want to have my brain functioning at full capacity, there are residual effects that happen and I can’t hold so much information all at once. At times things slip away. I have particularly noticed that I make errors with numbers. With that in mind I accept my limitations. I tried to be as present as I could during the conference, and I hope to be careful when putting dates with numbers so as not to make careless errors. I plan to attend again next year and I am determined to keep myself on the Twitter feed while I take in the presentations and have an assistant help in finding the articles that represent the presentations so that those who can’t attend can get the information.

blog_iconIf I wait too long to blog about SABCS I know that I will write something so long that it will be too much to read. I am going to post more than one post so that I can keep this at a reasonable length. I am also going to suggest some great links to other blogs and if you wish to follow them just click on the ones that are highlighted in a different color and it will take you to these other great places for information. To read some terrific explanations of some of the studies take a look at Dr. Susan Love’s Act with Love Blog, San Antonio Breast Symposium Day 1 – Day 3, with a great round up including the Survivorship Presentation on Day 3, #BCSM blog presentations by Dr. Julie Gralow, SABCS Highlights, and SABCS Highlights by Dr. Robert S. Miller.

28627_119149311460178_7118937_aI did miss seeing Dr. Susan Love at the conference live but her round up of SABCS is amazing! I saw Dr. Gralow presenting and had the good fortune to meet Dr. Miller in person. I loved seeing the people I know from social media live at the conference. It turns out, thanks to connections on Twitter, that I was fortunate to share my room with a remarkable breast surgeon, Dr. Dana Abraham. It’s so exciting to meet doctors that care about patients and want to understand this disease from their perspective. It is wonderful to see friends who are fellow patient advocates. I have some photos here. If I mention all the names this will really get very long!

IMG_5698Today, I want to concentrate on my takeaway from all the presentations from the perspective of a patient advocate. One of my favorite parts of the conference was the Case Discussions where the panelists included doctors who are experts in medical oncology, radiotherapy, and they also included a patient advocate. Here, doctors come up to the mike and present real case studies and the panelists give opinions and their ideas about what should be done about the cases presented.

IMG_5667 - Version 2It was exciting to see that the doctors included a patient advocate on the panel as it’s becoming clear to me that doctors are learning a lot from patient advocates. I am so impressed with how hard these medical professionals work to understand and help their patients. I am also very impressed with how many doctors are reaching out to patients with social media and including patient advocates by starting to bring them in to the conversation. Listening to the panel of experts recommending treatments, especially keeping track of all the trials that were being presented at the conference, was extremely impressive. Both the doctors and the patient advocates tried to come up with ways to help and I was really impressed with the fact that the atmosphere was focused on presenting all of the evidenced based information to patients about their options and making sure that patients are part of the process in deciding what they do for their treatment.

shutterstock_27416451I think it’s so important that patients make sure they are working with a doctor who keeps up with the latest information available for their specific case and allows the patient to make informed decisions by presenting the patient all the options. When a patient is diagnosed at any stage of breast cancer, there is so much information and it’s hard to sort it all out. Yet if a doctor just dictates the treatment without explaining the pros and cons of all the options, the patient is not being allowed patients to understand fully what choices are available. As patient advocates we want to know as much as we can about this disease because one size does not fit all. Every case is unique.

I was struck by a doctor who had a patient that was having trouble taking her tamoxifen. Her doctor really cared about trying to have her patient be compliant and the patient was having terrible trouble with the side effects. With this case the doctors had some ideas for medications and the patient advocate (Beverly Canin) also recommended alternative therapies. What struck me most was how compassionate the doctors were as they presented their cases as well as the suggestions coming from the panelist, especially when using all the trials presented at SABCS.

For anyone who has breast cancer, has been in treatment, or is in treatment for breast cancer and knows first hand about these awful side effects from so many treatments they can consider alternative complimentary treatments. A great resource for complimentary and alternative therapies is The Annie Appleseed Project,

Is-Chrysin-A-Good-Natural-Aromatase-InhibitorIn contrast to the incredible compassion that I saw from so many doctors, I saw a different approach from one of the case study presentations that had to do with AI’s and compliance of patients. The presenter seemed to want to be dismissive of the patient’s complaints about side effects with these medications. Without calling out the specific study or doctor presenting it, I was disturbed by his lack of compassion and how much he gave the impression that the side effects and his data seemed to imply the effects were probably more in the patients mind than as a result of the medication. Here was an example where a doctor needs to be more like the incredible doctors I was surrounded by as far as being compassionate and realizing these side effects are real.

IMG_5670I also love attending the Alamo Breast Cancer Foundation (ABCF) Hot Topics Mentor Sessions. They always have the best speakers reviewing many of the case studies presented during the day as well as other topics of interest to them. One of the panel discussions was taped and to see this great presentation go to: Breast Cancer Answers’ Video of SABCS Hot Topic Mentor Sessions.

One of the patient advocate questions dealt with asking what we can do as advocates. Clifford A. Hudis, MD the President of ASCO, Chief of Breast Cancer Medicine Service and an attending physician at Memorial Sloan-Kettering Cancer Center, had recommended that we keep writing to congress.

congressimagesI am a member of ASCO in Action and I recommend that everyone interested in being an advocate join this group. They give action alerts and pre-written letters to congress about issues important to all of us, especially in reference to oncology. I always take the letters and when they say “As an oncologist in your district” I change the words to “As a patient of an oncologist in your district” and send the letters off to my representatives. Another important organization to pay attention to is Breast Cancer Action. They also have important actions and letters that impact the breast cancer community. At Advocates 4 Breast Cancer we are working toward trying to get a program to make it easy for other advocates to write these letters, but for now please stay posted on this site for alerts to letters that we recommend you write. I was in agreement with Clifford Hudis, MD’s observation that he hears back from every person we write to in Congress. I send them via email and I am glad that they are paying attention.

IMG_5630I was also moved by a talk that Cate Edwards (daughter of the late Elizabeth Edwards) gave during a dinner with Novartis Oncology about her involvement with metastatic disease, recognizing the importance of the patient as well as the caretakers. Everyone knows how passionate I am about making sure no one with Metastatic Breast Cancer is forgotten.

545527_494545153891973_631458727_aAs breast cancer patient advocates Stages 0-4, we must always put those with Metastatic Breast Cancer (MBC) first and foremost in our minds and they should never be left to feel abandoned or alone. I wish there had been more at the conference focused on metastatic disease. There were some studies, but next year I’d like to see a stronger focus on research for MBC.

Sequestration has taken its toll of health science at the NIH and NCI. During the year things had to be scaled back 10-15% in labs. This hurts research because science relies on heavy funding. Once again this is where we as patient advocates in the US must keep paying attention to what is happening with the budget in congress and keep writing to congress to have our voices heard.

I am going to end this post as I will be posting some more thoughts in another installment. What a thrill it was to attend this conference live. I am also so grateful for the one-on-one meetings that I got to have with my fellow advocates and doctors.

Happy Father’s Day!

Image 3Happy Father’s Day dad. I wonder where you are and whether you and my brother still think about legal cases. I know you both are watching over me as I have taken over responsibilities that I never thought would be mine. I am grateful you taught me how to take care of things and both of you always helped me when I needed help. I think a lot of when you were sick dad and the night before your last night I lied to you when I went to the hospital and told you I slept and woke up early at four in the morning to be with you. I really was at the hospital lounge so you thought I slept because I couldn’t sleep knowing you were alone and very sick in the hospital. I am glad you didn’t know you had cancer for the last 6 months of your life and only found out 10 days before you died.

You said you were tired and a little under the weather but you didn’t have to suffer as long by not knowing. I was so glad I came to see you in the hospital and we had some time alone so I could read you the card I made for your surprise birthday party that we couldn’t have. I am glad we all could come together by your bedside and have everyone holding hands. We were full circle with almost all of your children and grandchildren united in our love for you.

Happy Fathers Day to my older brother! I really miss you so much. I was so lucky that you were always there for me whenever I needed you. I know you were very ill but I thank you for helping me get my paperwork done. I also loved getting to work in your legal office and I treasure the days you took me to court with you so I could see all the great work you did. I kept my promise to you and found the most precious thing you asked me to search for. I know the chemo was tough, but I thank you for letting me go with you, as I understood because I did chemo too. I only wish you didn’t have so many metastatic tumors that grew so fast which could barely be contained.

I still am so surprised you died on Father’s Day, since being a fantastic dad was so important to you and I know how much you loved all of your children and grandchildren. You worked so hard to provide for them and we know how difficult it was for you to have the cruel disease of esophageal cancer take over your body and mind. You stayed with us as long as you could and I hope wherever you are, please know how much we love and miss you. We had such a special bond and a great childhood.

I miss your humor and way of uniting everyone for all the important times. It’s hard without you, but please know I have kept every promise that we spoke about and you and dad are always with me and the rest of the family in spirit.

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.

MusaSmI 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.abc

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.susan-love-cancer-20130213-001

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”.

IMG_5124Shirley 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.”pink_425x320

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 thDepartment_of_Defense[1]e 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.