Special Post by Tami Boehmer

This is a very special post by Tami Boehmer. I am reblogging it here, but I will also add the original link:

http://www.tamiboehmer.com/2015/07/no-expiration-date-a-tribute-to-our-angel-krysti-hughett/

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No expiration date:  A Tribute to our angel, Krysti Hughett

Last night, I lay in bed and couldn’t sleep. I didn’t know that my dear friend, Krysti Hughett, drew her last breath just an hour before. Maybe my body and soul could sense it. Krysti passed away on July 7, after more than 10 years of beating the odds of very aggressive stage IV inflammatory breast cancer. She accomplished such an overwhelming task with her determination, incredible intelligence, and tender love and support she  gave to others. Yet I can feel her presence as if she was still here. And in a way she is.

It is no coincidence I met Krysti while she was helping others. It was about six years ago, and Krysti was leading a Young Survival Coalition (YSC) support conference call for stage IV breast cancer survivors. I was fairly new at the game and nervous about reaching out for help. It was then that Krysti earned the moniker I gave her – “resource queen.” She told me about a magical place called Camp Kesem and suggested my daughter would like to attend. Her own daughter Molly had been going and loved it. I signed Chrissy up for that summer and she and Molly (AKA camp name Mo Mo) became cabin mates and fast friends. We’d meet up with Krysti and her husband Bill at camp and have dinner afterward. It became our tradition.

Krysti was my mentor and friend. She let me in on so many cancer perks I’d otherwise would have not known about. In addition to Camp Kesem, there was a  wonderful mountain retreat weekend through an organization called Image Reborn. You better believe I took advantage of that and passed it along to my breast cancer friends.

Krysti was also my inspiration and fountain of information for clinical trials. Krysti, I found, knew more about them than many of my doctors.  It extended her life and many others  she so freely advised. I once told her she should get paid for the hours upon hours of consulting she provided for so many people. She shot me down of course. Krysti gave with love; money had nothing to do with it.

Every year we met at Camp Kesem, Krysti would joyously announce that she made it another year to see Molly go to camp. She loved that place, and she loved her girls – Molly, Mindy and Megan. We had a special relationship, but I knew I shared her with so many people who also had a special relationship with this remarkable lady. As she said in her final note, she was loved.

Last Thursday, I went up to Indianapolis with my friend Joules Evans for my scan and blood work for my upcoming clinical trial. Afterwards we stopped in and visited Krysti who was at a nearby hospital. We were among many people who gathered at her bedside. Krysti was struggling to breathe but took off her oxygen mask so she could talk to me. I instinctively stroked her head as she labored to speak. I asked if I was bothering her but she assured me it felt very good. I wanted to give back some of that love and caring she so generously shared with me. We reminisced how we met, and she wanted to know about my clinical trial. Her mind was still sharp as ever and she let me know it sounded promising. I told her I loved her very much and she said she loved me.

There seemed to be little left to be said, but as I turned to head out the door, she had one thing to say to me. “Please let everyone know how you’re doing on your trial.” She wanted me to keep in touch with her family and friends. And I suspect, that she will be listening from above as I give my updates. I know on some deep level that Krysti is watching over me and everyone she has loved. She is just next door, in another dimension, but is still helping everyone. I can feel that right now as I write this.

Krysti’s legacy lives on, and I’m grateful to play a small role in that. Her story is one of the many featured in my book, Miracle Survivors: Beating the Odds of Incurable Cancer. I know Krysti would want you to read it because her story is so encouraging, just like she was in her life.

I’ll leave you with a Krysti quote from my book:  “At one point, I was NED (No Evidence of Disease). I call it No Expiration Date. When my husband got me a handicapped sticker – which I needed because I had a brain tumor at the time – it said no expiration. That’s what I focus on whenever I’m in my car. I want to stamp that on my forehead.”

I know one thing for sure, there is no expiration for the memories and
legacy Krysti leaves behind. Your body may have expired; but your spirit will forever be with us.

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Tami is an amazing person whose story and phenomenal books are incredibly inspirational. After her five-year, cancer-free anniversary she had a metastatic recurrence of breast cancer in 2008. Tami was shocked when One doctor told her, “You could live two years or 20 years, but you’ll die from breast cancer.”
Tami explains, “I wanted talk with other cancer survivors who didn’t accept doctors’ predictions–people who beat the odds. I was determined to find out how they did it so I could do it myself.  So I started searching for “miracle survivors” nationwide for my book, From Incurable to Incredible: Cancer Survivors Who Beat the Odds.”

Her new book called  Miracle Survivors: Beating the Odds of Incurable Cancer, was released in November 2014 .You will find all new stories, but Tami again says “it’s the same message: there is hope no matter what the circumstances.

I feel as if I’m fulfilling God’s purpose for me through this work. It has taught me cancer doesn’t have to be a death sentence. Like the people I’ve interviewed, cancer for me was the beginning of a new way of life; one of appreciation, hope, and discovering one’s potential.”

Please learn more about Tami and visit her blog at: http://www.tamiboehmer.com

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

It’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.

Jada 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.

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.

On 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.

I 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.

The 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.

Time 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.

I 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.

Luckily 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

It 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.

As 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.

If 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.

I 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!

Today, 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.

It 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.

I 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,

In 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.

I 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.

I 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.

I 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.

As 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.

It is time to work together!

I found this great post on Dr. Susan Love’s “Act with Love” blog. She really put in to words everything that is going through my mind in hopes of all of us who care about breast cancer advocacy working together so that we can make a difference. I am glad Dr. Susan Love reminded us that we can have difference’s of opinions on things, yet still work together on mutual projects that we care about. I have always believed that “United we stand, divided we fall.” This post that I re-blogged is so inspiring and well worth reading!

It is time to work together!

By DSLRF On Wednesday, September 4, 2013 · 

As the summer wanes and October looms, I am struck once again about the fragmentation of the breast cancer advocacy movement.  The history of activism dates well back to 1952 and the American Cancer Society’s Reach to Recovery when a doctor had to give permission for a post mastectomy woman to be seen by a volunteer, lest she be too distressed by the encounter.   The Susan G Komen Foundation (now Komen for the Cure) started in 1983 to raise awareness. Others, such as the Women’s Community Cancer Project (Cambridge, Massachusetts), the Women’s Cancer Resource Center (Oakland, California), Breast Cancer Action (San Francisco), Y Me (Chicago), Mautner Project for Lesbians with Cancer (Washington, D.C.), and NABCO (New York) were focused on education and political action.  As these groups sprang up around the country, it served as a tipping point in the battle for attention to the problem of breast cancer.  These heady days led to the for the formation of the National Breast Coalition (1991), Department of Defense Breast Cancer Research Program (1992), the National Action Plan on Breast Cancer (1993), the California Breast Cancer Research Program (1993) and the Breast Cancer Stamp (1998). Many good women and men contributed to these early successes and we stand on their shoulders and by their sides.

Now as we head into October, anticipating the arrival of the pink tsunami, in some ways it feels like the original battle to end breast cancer has been co-opted by these annual celebrations of survival.  The messages are incessantly upbeat and rarely mention that many women still go on to metastasize, many still die, and the “survivors” live with a new normal based on the collateral damage caused by their treatments.  My recent experience with Leukemia has made me impatient and dissatisfied with the status quo.  While many programs, such as the National Breast Cancer Coalition’s Deadline 2020 and our own Army of Women, are valiant efforts to move us to the goal, it is going to take more than that to get there.

The goal of ending breast cancer is too important to leave to any one group or approach.  I think it’s time for the breast cancer organizations and foundations to start working together on projects that make sense.   We need to find opportunities to collaborate and speak with one voice. We don’t need to agree on everything, but we do need to rise above our differences to find ways and projects that we can work on collectively. Only by working together will we ever be able to achieve the overriding goal we all share– a future without breast cancer!

#SCORCHY #BCSM #SCOTUS #ASCO13 #BCANS

This 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.

I 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.

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

I 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.

Facebook 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.”

Scorchy 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.

There’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.

The 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.

The 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.

It’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.