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.

 

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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.

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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.

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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’–

 

Seeking Volunteers & Advocates!

Get Involved and Make a Difference!

Please visit our main site at http://www.a4bc.org. There are many features and important information.

We are interested in hearing from anyone who wants to volunteer, get involved and/or seeking employment.

Join Us copyPlease consider volunteering your time. We need help managing office issues, assisting in projects, event planning, fundraising, marketing, social media, action campaigns, and with web site content. There are also small projects that you can help with. Just let us know what you are interested in doing, your time constraints and together we will make it happen.

We also have openings for volunteers and/or scholarships who advocates who want to attend the San Antonio Breast Cancer Symposium, YSC, AACR, NBCC, ASCO, Breast Cancer Symposiums, Metastatic Conferences, as well as other lectures and meetings where we will help pay based on your needs and have you represent A4BC. You can write about your experience at these great meetings. Feel free to suggest one that you are interested in and contact us!

We love our volunteers and staff. Tell us a little about yourself and let us know your interests.

For more information email us:

           susan@a4bc.org

You will hear back from us right away. You can also phone us at: 310-923-2339.

If you can’t volunteer and would sill like to help we also appreciate donations. We also have some opportunities for employment that we are open to discussing!

Donate Graphic 6-25-15

Seeking Volunteers, Advocates, and Employees!

Get Involved and Make a Difference!

We are in the process of getting our new official web site up live in 2 weeks! There are many features and important information that we are looking forward to sharing.

We are interested in hearing from anyone who wants to volunteer, get involved and/or seeking employment.

Join Us copyPlease consider volunteering your time. We need help managing office issues, assisting in projects, event planning, fundraising, marketing, social media, action campaigns, and with web site content. There are also small projects that you can help with. Just let us know what you are interested in doing, your time constraints and together we will make it happen.

We also have openings for volunteers and/or scholarships who advocates who want to attend the San Antonio Breast Cancer Symposium, YSC, AACR, NBCC, ASCO, Breast Cancer Symposiums, Metastatic Conferences, as well as other lectures and meetings where we will help pay based on your needs and have you represent A4BC. You can write about your experience at these great meetings. Feel free to suggest one that you are interested in and contact us!

We love our volunteers and staff. Tell us a little about yourself and let us know your interests. For more information contact us at: info@a4bc.org.

You will hear back from us right away. You can also phone us at: 310-923-2339. For more information contact us at: info@a4bc.org.

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.

Metastatic Breast Cancer Awareness Day – Every Day and every October 13

MetsDay13We all know that October is Breast Cancer Awareness month. There’s pink everywhere and all sorts of breast cancer awareness campaigns. In 2009 Metastatic Breast Cancer (MBC) got one day for awareness. Thanks to the efforts of 9 metastatic patients and countless others, they got congress to designate October 13th as Metastatic Breast Cancer Awareness Day.  It’s a start. “Breast Cancer Awareness” without “Mets Awareness” is not awareness at all. Now we need everyone to be aware of MBC all year-long. Every day should be Metastatic Breast Cancer Day.

Ribbon_whitelinedpinkwashingpicEspecially in October (Breast Cancer Awareness Month) there have been lots of questioning of the words, the color and what really matters. There’s frustration in the breast cancer community because breast cancer has been painted with survivors and death rates trending in a favorable direction. Sadly when it comes to MBC and death rates we haven’t come very far.

For example in the United States alone in 1991 there were about 112 deaths from breast cancer a day. This year there are about 108 deaths a day in the US. While those 4 lives a day are very important people I don’t think that in over 20 years preventing 4 deaths a day is tremendous progress in this country. There are about 155,000 people living with MBC in the US a year. There are almost 40,000 deaths a year from MBC in the US and around 400 of these deaths are men.

545527_494545153891973_631458727_aAlmost 30% of all breast cancers become metastatic. Some start out with “mets” (about 6-10% of cases) but if you get breast cancer at an earlier stage there’s up to a 30% chance that you will become metastatic. Those who have MBC know this. We still don’t know the cause of many breast cancers and we also don’t know why breast cancer patients become metastatic.

MBC_Infographic_01_v14There is no cure for MBC. There are many drugs that can extend lives for years, but treatment is life long switching from drugs that work for a period of time until a drug no longer works. Every case is different and there are different types with some types more difficult to treat than others.

What we do know is that MBC kills very special people. When it comes to breast cancer, people’s stories paint the picture of what happens with this disease. One of them was my fearless friend Li Bailey. In our world of social media very few people knew her. She didn’t have a blog, Facebook page or Twitter account. She had Triple Negative (TNBC) MBC and there were fewer options for her treatment. She knew every detail of her case, and was a very sharp ePatient.

Li and I went through our primary chemo together at the same time. We got together a lot as friends and it was a relief that I wasn’t bald alone. We learned so much about breast cancer together. I had a local recurrence. Today I am NED (no evidence of disease). She had a mets recurrence on her birthday, February 19, 2009. She danced in to the light on January 6, 2012. She went through various treatment options that were wonderful when they worked. Having to change regimens is a harsh reality for anyone with mets. While my friend did not live as long as I would have liked with mets, there are so many cases with different outcomes. I have lots of friends that respond longer to treatments who are living with mets for a very long time.

Li had a wonderful ability of living in the moment with me on a great day. I’m not saying there weren’t some bad ones but we made a pact that on great ones we would be in the moment.

IMG_3171IMG_5232One of the best days was when Li got her dog Shelby as a puppy after we finished our primary chemo. I am so grateful that she chose me to take care of her dog. I loved visiting her and Shelby so many times. Shelby helps me every day keeping memories of Li alive. She is such a wonderful gift. I know Li would be proud of how well Shelby is doing, while she is a constant source of joy in my life.

There’s not a day that goes by that I don’t think of Li and all my mets sisters living and dying from MBC. I was very lucky that Li let me in to her life with mets and accepted my help. It’s so rewarding to able to help. Li helped me a lot too. She never missed being with me for my many surgeries and I was with her for hers. Having one day for MBC awareness is a start, but we have a long way to go and there should be many more days of awareness for MBC. As patient advocates we have to make metastatic research a priority. We must stop this terrible disease and prevent it from spreading to other organs. This research will hopefully lead to helping end all cancers.

#SCORCHY #BCSM #SCOTUS #ASCO13 #BCANS

Social Media SignThis was an incredible week for breast cancer patients, advocates, doctors, bloggers, and what has happened in breast cancer news and social media. I started on Twitter a year ago and for those of you who don’t know about the format, Twitter is a place where you pick a name for yourself (mine is @a4breastcancer-A4BC was taken) and then there are #hashtags which are names of groups or topics.

Because I find and put together breast cancer news articles as part of Advocates for Breast Cancer (A4BC), I created a new hashtag, #BCANS (Breast Cancer News). I am learning a lot about what ends up as news as well as trying to sort through articles that I hope will be of interest to fellow medical professionals, researchers, advocates, patients, and organizations while I try to decide what is newsworthy. This has been an incredible week of news combined with social media.

bcsmcosI am very proud of being part of the #BCSM (Breast Cancer Social Media) community which meets on Monday nights from 9-10 Eastern Standard time. It is an incredible group moderated by Dr. Deanna Attai (breast surgeon), Alicia Stales and Jody Schroeger and this week we had a review of what happened in breast cancer at the annual meeting of #ASCO13 ( American Society of Clinical Oncology Meeting 2013, Chicago May 30-June3).  I was thrilled because I had followed and gathered #BCANS (breast cancer news) everyday at #ASCO13. I also used and followed the #ASCO13 Twitter feed.

BCSM (1)The #BCSM meeting Monday night was so exciting because we had almost as many doctors as patients and patient advocates on the chat including the President of ASCO , Dr. Clifford Hudis (who is also the Chief of Breast Cancer Medicine at MSKCC-(Memorial Sloan Kettering), Dr. Seisenberg (oncologist), Dr. Diane Radford (breast surgeon), Dr. Bob Miller (oncologist), Dr. Matthew Katz, (radiation oncologist),  Dr. Krupali (medical oncologist), Dr. Dana (breast oncologist), Dr.Anas Younes (lymphoma expert), Dr.Damodhar (surgeon), and Dr. Naoto Ueno (medical oncologist). (I hope I didn’t miss anyone and I simplified their specialties as otherwise this would be very long!) It was so exciting with all the Doctors and patients interacting, talking about the breast cancer highlights from #ASCO13.

What we discussed is in trials and things we can be hopeful for in the future as well as certain things that may impact our specific cases that we can talk to our own oncologists about. I have mentioned how impressed I am with ASCO because the organization recognizes the importance of patient advocates as well as social media and it relationship to current oncology practices.

What was so great about the #BCSM chat was that patients and doctors could come together and discuss highlights from the #ASCO13 meeting  and I love that the doctors are willing to listen to patients, our thoughts, stories as well as ideas and we all learned something together. I am honored that theses doctors care about patients and come together for this type of meeting and I am so impressed with the people I am meeting as a result. To see the transcript follow this link: #BCSM Transcript- Highlights from #ASCO13

david-jay-the-scar-project-04I am so excited with what’s happening with social media. I am so proud of my friend and fellow blogger Scorchy Barrington  at: The Sarcastic Boob.  Scorchy started a petition on change.org opposing Facebook for not allowing photographs from famed photographer David Jay, that showed post-mastectomy photos of women known as The Scar Project, because they violated Facebook’s terms of service. Imagine my delight as I am gathering the news on Wednesday and I see on my news feed an article in the Chicago Tribune that talks about Scorchy’s change.org petition, where she got over 21 thousand signatures of people who felt the pictures belonged on Facebook. I rushed to get the message out on Twitter and as I was also getting it on Facebook there were so many news feeds of articles including CBS News, FOX,  The Daily News, The Daily Mail, NBC, ABC , (to name a few). coming out at once that I could hardly keep up with them. Then there was a burst of energy on Twitter and Facebook with so many people cheering for Scorchy and another great friend and blogger AnneMarie at: Chemobrain…In the Fog, started a campaign to get #Scorchy trending on Twitter.

FacebookFacebook posted this statement: “We agree that undergoing a mastectomy is a life-changing experience and that sharing photos can help raise awareness about breast cancer and support the men and women facing a diagnosis, undergoing treatment, or living with the scars of cancer. The vast majority of these kinds of photos are compliant with our policies.”

Thanks to brilliant work of Scorchy they will now show these important photos as well as Annmarie Giannino-Otis’s photos at Stupid Dumb Breast Cancer. If you haven’t seen The Scar Project photos, I recommend you look at it here: The Scar Project

Scorchy was quoted saying, “We want the world to know that breast cancer is not a pink ribbon — it is traumatic, it is life-changing, and it urgently needs a cure.”

blog_iconScorchy has breast cancer and is Stage IV. She is an amazing blogger, honest, funny, engaging and what she did with this petition and getting all of this news in mainstream media is so fantastic, because patient advocates have worked so hard to let the public know that breast cancer is so much more than a pink ribbon, while all of this “pinkwashing” about the disease distorts some of the harsh realities about breast cancer. These photographs depict real women who know the truth about mastectomies which make scars and are many times lots of surgeries (my case), with different women making difficult choices about whether to do reconstruction and some women especially who get IBC (Inflammatory Breast Cancer) can’t even try reconstruction because IBC happens on the breast skin. As I have said so many times this disease is killing one woman every 14 minutes in the US alone.

pinkcultureThere’s a lot of “pinkwashing” of the disease and so many woman who have had breast cancer hate the color pink because of what has been done to the color by representing an oversimplification of a pretty pink disease. As a former ballerina I still love the color pink but I detest “pinkwashing.”

Getting back to this exciting week and all the action on social media, I was still so happy when I got up on Thursday after all the excitement that #Scorchy brought and while I was preparing #BCANS articles, #SCOTUS (The Supreme Court of the United States) ruling came down and 9 judges voted against Myriad genetics.

I have written about the Supreme Court Case in which Myriad Genetics was challenged because they had a patent on our human BRCA genes. This patent allowed them to be the only ones to do this gene test which kept other researchers and companies from conducting research for better tests that would help women with treatment decisions by knowing if they are at high risk of developing this genetic form of breast and ovarian cancer. While Myriad held the monopoly on the test, other companies were prevented from developing better and less expensive tests and more research into other genes.

Outlaw human genes_nThe case originally in 2009 brought together many diverse plaintiffs in New York Federal Court that included the ACLU,  the Association for Molecular Pathology, the American College of Medical Genetics, individual researchers; women’s health and breast cancer advocacy groups, including Breast Cancer Action and Our Bodies Ourselves; and women who have breast and ovarian cancer. Originally they ruled against Myriad but the case was overturned a year later in an appellate court. Absent from the list of plaintiffs was the Susan G. Komen Foundation who lists Myriad Genetics as a donor to their organization.

One of the plaintiffs, Breast Cancer Action (which I am so proud to be on the Speakers Bureau) is a national grassroots education and advocacy organization working to end the breast cancer. They do not accept any donations from companies, corporations or anyone who profits from or contributes to the breast cancer epidemic.

blog-brca-decision-500x280-v02The Supreme Court ruled against Myriad Genetics by ruling that companies cannot patent parts of naturally occurring human genes. The ruling was complex and at the heart of it was the patent, but the result will help doctors, pathology labs, research, breast and ovarian cancer patients and those at high risk for the disease and will also help make the test more affordable. The test was very expensive (over $4000.00) and many women were uninsured, and those who carried insurance while doing the test were sometimes denied payment or had very high co-pays for the test. There is already a genetics testing company based in Houston that said it would offer the test for $995.00 called DNATraits. To see the decision go to: The Association for Molecular Pathology et al. vs. Myriad Genetics .

It was so much fun for all of us to get on Social Media cheering this monumental decision of the Supreme Court. I feel so connected to so many others including breast cancer patients, patient advocates, doctors, legislators, organizations, bloggers, and of course #Scorchy, that are working every day to help other patients, make the public aware about the realities of this disease,  get more funding for research especially for patients who are metastatic and doing difficult treatments every day to stay alive, and finally work to develop a vaccine that will prevent this horrible disease in the first place.

blog_iconIt’s been a fantastic week of news and  social media. My favorite end to the week will come out soon from my fellow blogger Marie at: Journeying Beyond Breast Cancer, where she will do the weekly round-up of some of the best blogs that came out this week. It’s really a great time to be connected to so many awesome people.

The Angelina factor

Here is a great post from my friend Tami who has MBC (Metastatic Breast Cancer). What I love most about Tami is while she knows the realities of this disease, she continues to inspire as she shares stories about hope on her blog as well as her award-winning book, From Incurable to Incredible: Cancer Survivors Who Beat the Odds.

I was also sorry to hear about Angelina’s Aunt who died from MBC. Because there are 113 deaths a day from MBC in the US alone, you can also read an incredible Tribute to Maria Wetzel who also died from MBC the same day as Angelina Jolie’s aunt.

We must do everything to continue research that will help those with metastasis stay alive, while we work on ending this terrible disease.

The Pink Fund

Now that some time has passed, I think I can discuss this in a rational manner. There have been varied reactions to Angelina Jolie’s descision to have a double mastectomy after testing positive for the BRCA gene mutation, a hereditary factor affecting a five percent of breast cancer and 10-15 percent of ovarian cancer cases. The cover of People magazine calls it a brave and heroic act. Others call it self-serving and drastic. I just read an article in the Boston Globe, which criticized her for having the wealth and beauty to afford such an endeavor.

My reaction? Sheer anger and frustration. I bristled at all the attention and admiration bestowed upon Angelina, when in contrast I feel the real heroes are the women facing metastatic (stage IV) cancer who  garner little publicity, and worse, funding. I felt furious that so many wonderful women and men, many of them young…

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Notes from Dr. Susan Love Speaking at the Summit

I really enjoyed hearing Dr. Susan Love speak at the Inaugural Advocate Leadership Summit. For starters it was such a thrill and so exciting to see her after knowing that she went through intense treatment including chemotherapy and surgery for leukemia. I always feel so uplifted when she talks about breast cancer and opens our minds to see things with a fresh perspective. She raised some great points. I took my notes and I hope I am reflecting what she spoke about in the best way possible to help others read what she had to say.

susan-love-cancer-20130213-001She spoke about breast cancer today, and the damage of treatment and over diagnosis. She said with our goal of finding every tumor even those that are just DCIS and have not progressed to cancer, is like the TSA screening. We are in a climate of over treatment where we tend to slash, burn and poison. Then when we have recurrences we have done so much treatment that it could reduce the treatment’s effectiveness. She acknowledges that doctors roles are to find things. Yet 29% of cancers would not kill. Only 20 -30% will become invasive. We over treat and over test. We are in a climate of more is better. We use MRI, PET CT, and Markers. All of this equals finding reasons for treatment. So we do surgery, radiation, chemo, and hormone targeted therapy.

Yet we never think of not doing a treatment or subtracting from a treatment plan. We just throw everything we can at whatever we find. She talked about how the oncotype dx and/or the mammaprint test at least looks at whether all of this treatment is necessary. She says none of this is malicious on the doctor’s part. It’s just that no one is looking at the big picture.

For example, when patients are diagnosed, they are scared. So they listen to their doctors and do what they are told. But with all of this treatment thrown on all the over diagnostic testing and never subtracting from the treatment especially at an early stage comes in a climate of intense fear. No one is ever told about the terrible toll side effects will play on the patient from all of this slash and burn treatment. There is a huge amount of collateral damage.

Oncotype_boxMammaPrint_posevnoHaving come from doing chemotherapy herself she understands how much this type of treatment takes its toll. Side effects are always down played. No one talks about the effect of AI’s or lymphedema. At least the oncotype dx test and mammaprint test looks at whether treatments might work. It would help us to know before treatment, what all these side effects were, whether all of this treatment is necessary and if every case warranted and needed all of this treatment. Also is all this treatment going to be effective or will it just overtax the body and mind? Is anyone looking at the big picture? Can we try to predict if someone will get lymphedema before we rush to do surgery?

With radiation there is skin damage. Treatment causes muscles to atrophy. Do we make all women wear a protective sleeve on an airplane? Do we let patients know that when we take breast tissue away that there will be no sensation left in the breast? Do we tell ahead of all the pain from surgery?

There is pain from surgery. There is collateral damage from all treatment. There’s numbness, muscle atrophy, skin changes, and heart disease. With all of this systematic therapy all things have side effects. The fatigue and chemobrain lasts for years. There’s heart disease from chemotherapy. Anthracyclines can cause leukemia. These things have lasting side effects. Fertility problems, joint problems, fractures and second cancers…all of these things are real. Treatment is not a free lunch.

chemodrip.jpg.pagespeed.ic.1vc9PB_Kv3When someone is triple negative at the beginning they can do well, but statistics show that triple negative breast cancer tends to recur early on. Other cancers tend to recur later while the patients are far away from all of this intense treatment. This is where prevention makes the most sense. If we can prevent the problem in the first place and knew what the real bugs in the breast were at the beginning wouldn’t we be better off? If we understood the environment before the problems took place and we had a vaccine to prevent these problems and we really understood how to keep a normal breast before we rush to all this treatment, wouldn’t that be a better approach? If we really looked at immunology, anatomy, physiology and found new clues and new ways to study DCIS before we rushed to throw everything in the kitchen sink on it, would we need surgery for DCIS? Could 3D ultrasound help with DCIS?

Ductal carcinoma in sity (DCIS)
Ductal carcinoma in sity (DCIS) (Photo credit: Wikipedia)

Instead of continuing to follow the things as they are, we at least owe it to ourselves to be asking these questions. Instead of rushing to treatment with DCIS would it be better to see carefully what was happening before we put a patient through these treatments that have collateral damage and side effects? Tamoxifen has a lot of side effects as well as AI’s.

At least by asking these questions and trying to prevent the problem with a vaccine we would be looking at everything we are doing and starting to come up with new ways of approaching the problem instead of just following the status quo of what we are doing. We need to do this so that we can avoid all of this collateral damage and also have these treatments available in case things progressed before someone has been so over treated that when they present with advanced disease all of this has been used and is no longer effective.

28627_119149311460178_7118937_aI also asked her whether by working on a vaccine to prevent breast cancer could we also apply using this for metastatic disease by injecting someone with a vaccine and being able to turn their disease around?  She very carefully admitted that this was not her expertise and that she had just finished treatments, but she did feel that there was nothing to prevent us from trying to make a vaccine that also tackled metastatic breast cancer. Whether or not this is feasible I do not know, but what I did appreciate was hearing her perspective after going through as much as she has been through, and I am so glad that she is part of the team of trying to find answers and look at new ways that we approach this terrible disease.

It’s so great to have her back with all of us, after her treatments. She is truly someone who I admire and knows so much about breast cancer and it’s amazing to see her post treatment with so much enthusiasm for getting back to work on all of these important issues revolved around breast cancer.

Dr. Susan Love, MD, MBA, FACS is a Clinical Professor of Surgery at the David Geffen School of Medicine at UCLA, and the President of the Dr. Susan Love Research Foundation. She leads the Love/Avon Army of Women, an initiative partnering of women (and men) who are willing to participate in breast cancer research with scientists who are conducting research on the prevention of breast cancer. She is the author of “Dr. Susan Love’s Breast Book,” which is in it’s 5th edition. Dr. Love is a founding member of NBCC and her foundation is represented on the Board of Directors of NBCC. She received her medical degree from SUNY Downstate Medical Center in New York and did her surgical training at Boston’s Beth Israel Hospital.

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After realizing that some people are not aware of the Oncotype DX test or the Mammaprint test, I went to their websites and here is the current information about the tests. Of course, always discuss this with your oncologist as this is only here to help those that don’t know the latest information about these tests that is available online.

According to the Oncotype DX website:

The Oncotype DX® test is a diagnostic test that helps identify which women with early-stage, estrogen-receptor positive and lymph-node-negative breast cancer are more likely to benefit from adding chemotherapy to their hormonal treatment. This test also helps assess the likelihood that an individual woman’s breast cancer will return. The Oncotype DX test provides important information that you and your doctor may use when making decisions about treatment. Post-menopausal women recently diagnosed with node-positive, hormone-receptor-positive breast cancer may also be appropriate candidates for the Oncotype DX test.

According to the MammaPrint website:

To be eligible for the MammaPrint gene expression profile, a breast cancer patient should fulfill the following criteria:

  • Breast Cancer Stage 1 or Stage 2
  • Invasive carcinoma (infiltrating carcinoma)
  • Tumor size <5.0 cm
  • Lymph node negative
  • Estrogen receptor positive (ER+) or Estrogen receptor negative (ER-)
  • Women of all ages