I received this in an email yesterday from Dr. Susan Love’s Research Foundation. Leave it to Dr. Susan Love to bring together Susan G. Komen, the Young Survival Coalition, and the Dr. Susan Love Research Foundation to collaborate on the collateral damage and side effects of Breast Cancer as part of the Health of Women (HOW) study. This is so exciting to have breast cancer organizations working together. Dr. Susan Love not only wrote about this concept but she is taking action.
There’s still time to participate with questions in this study so please read the release that Dr. Susan Love sent and get all of this great information including how you can join the conversation with Dr. Susan Love on Facebook, Wed October 2 at 9am Pacific Time and/or Twitter at 1:00 Pacific time.
Dr. Susan Love Research Foundation Teams with Susan G. Komen and Young Survival Coalition to Document the Collateral Damage of Breast Cancer
We’re pleased to announce the groundbreaking collaboration of three breast cancer powerhouses to document the short- and long-term physical and emotional side effects of breast cancer treatments as part of the Dr. Susan Love Research Foundation’s Health of Women [HOW] Study.
Those of you who have been following Dr. Love’s recent blog posts are aware of the outpouring of interest in documenting the collateral damage of today’s breast cancer treatments and many of you have already participated by providing key questions about your own experiences.
More data needs to be collected to provide the scientific community with the most robust cohort from which to derive and analyze the true cost of the cure. In the spirit of collaboration, the Dr. Susan Love Research Foundation reached out to Susan G. Komen and Young Survival Coalition as well as other advocacy groups to ask for their help in spreading the word.
Susan G. Komen and Young Survival Coalition have agreed and are inviting their constituents to share their experiences with collateral damage from treatment and to participate in the HOW Study as a means of identifying the causes of, and prevention strategies for breast cancer. This groundbreaking collaboration also demonstrates that different breast cancer organizations can work together on important issues. We welcome all breast cancer and cancer groups to join us.
Questions about collateral damage from breast cancer can be submitted through October to http://www.questionthecure.org. Anyone interested in being part of this initiative can register for the Health of Women [HOW] Study and complete the basic questionnaires on personal health and/or breast cancer diagnoses. When the collateral damage module is complete and online, participants will be notified by email.
To give you an opportunity to learn more about this groundbreaking collaboration, Dr. Susan Love will host a Facebook chat (Wednesday, October 2 at 9:00 a.m. PDT) and a Twitter chat (Wednesday, October 2 at 1:00 p.m. PDT).
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!
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!
For those of you that don’t use Twitter the # is a hashtag to refer to a group. The #BCSM (Breast Cancer Social Media) Community meets every Monday night at 9PM Est or 6PM PST to discuss different topics about breast cancer. I was always afraid of social media, but knowing that I am starting my non-profit organization called Advocates 4 Breast Cancer, I realized that I needed to get involved with social media. When I went to Washington DC for the National Breast Cancer Coalition Advocacy Meetings and Lobby Day in May of this year, I met other bloggers and took a class explaining how to use social media. The Twitter thing had me very confused but thanks to Lori who sat next to me and who blogs at “regrounding of chemo, cancer and red, red wine,” I signed up for Twitter and she told me about the #BCSM community, It took me some time to realize they had these meetings on Monday nights and I am so grateful to Lori for telling me about them. She also invited me to meet some of the group and I met one of the moderators Dr. Attai as well as Carmen and Liza for lunch in LA a few months ago. To the right is the picture of us after our lunch meeting in LA.
We had a wonderful write-up in USA Today. It is so good that I am going to print it here. There is also a video that is worth watching included in the story. I am so proud to be part of this group.
To read and see the video of the full story click here: VIDEO & STORY
This is the final installment in USA TODAY‘s four-week series on breast cancer. The series looks at screening, treatment and support via social media.
7:40AM EDT October 23. 2012 – Twitter, perhaps best known lately as a source of Big Bird jokes, might not seem like the first place to look for a breast cancer support group, a boot camp in medical research or the seeds of a social movement.
Yet a weekly Twitter chat on breast cancer, launched just over year ago, has blossomed into all those things and more, participants say.
The online chat, known as BCSM — or breast cancer social media — has a growing following of men and women looking to share war stories, empower patients and change the national conversation on breast cancer.
Folks who join the chats “are amazing. And they tell each other so,” says co-founder and breast cancer survivor Jody Schoger, 58, of The Woodlands, Texas. “They find the best in each other and celebrate that quality.”
Robert Miller, a medical oncologist at the Johns Hopkins Kimmel Cancer Center In Baltimore, is a frequent guest expert on BCSM. Miller says he understands how those unfamiliar with Twitter might be “skeptical that exchanging 140-character messages with a group of strangers for an hour every Monday night would be an effective tool. But it really is.”
Psychologist Ann Becker-Schutte, a frequent guest expert on BCSM, says the support group take its positive tone from its leaders.
Schoger and her fellow organizers — who became friends online months before ever meeting face to face — each bring unique talents, says Becker-Schutte, who specializes in helping people with serious diseases.
Schoger is a writer with a background in public relations. Co-founder Alicia Staley, 41, is a three-time cancer survivor from Boston, as well as an information technology analyst and online community manager. The third member of the team, California breast surgeon Deanna Attai, joined BCSM during its second chat and quickly became a co-moderator.
A well of support
Each moderator works hard to keep conversations on track and avoid the pitfalls of traditional support groups, Becker-Schutte says. While other support groups may allow people to vent their frustration, she says, BCSM provides a way for people to transform those frustrations into action.
In most support groups, “one or two patients sort of take over, and it turns into a bitch session,” Attai says. “That’s not what you see with #BCSM. … We have a common goal — that’s to educate, empower and support, and all that participate seem to embrace that.”
Schoger says she’s been pleased to see how BCSM helps women — and the occasional man — think through complex issues and become leaders.
“So many of these women are writing stronger blog pieces and are taking up the mantle in different breast cancer organizations,” Schoger says. “I just love watching it.”
Staley says the group’s success has surprised her. There’s no formal promotion. Instead, early participants often stumbled across the chats after searching for keywords — known on Twitter as hashtags — such as cancer.
“This is something incredible that has grown out of a hashtag,” Staley says.
The virtual community has spent more than 600 hours in conversation since their first chat. Schoger alone devotes about 15 hours a week to BCSM, and another 10 more to her blog, Women With Cancer.
The key to forming a close-knit community, Schoger says, is listening. She notes that many organizations and companies use social media such as Twitter as a one-way broadcasting system to put out a message of the day. The most successful people in social media foster real conversations, she says.
Becker-Schutte notes that the women’s fellowship doesn’t end with their hour-long chats. BCSM leaders monitor the group’s ongoing conversations. “If someone is having a hard time, it isn’t long before someone responds.” Becker-Schutte says.
Conversations such as BCSM fill a huge void, Attai says. She began chatting with breast cancer patients after noticing a 1 a.m. conversation between two women about Paget’s disease of the breast, a rare form of cancer that Attai has treated.
“Patients just aren’t getting the information they need,” Attai says. “Two women shouldn’t have to go online in the middle of the night.”
And although individual tweets are brief, the group delves into deep subjects. BCSM has tackled issues such as parenting and maintaining a career through breast cancer treatment; emotions such as anger, anxiety about recurrence and survivor’s guilt; and post-treatment complications such as “chemo brain” and lymphedema, which causes arm swelling.
Staley, who developed breast cancer twice after receiving radiation for Hodgkin lymphoma, says many patients feel alone. She divides her cancer experience into three phases: diagnosis, treatment and “after.”
“The diagnosis comes at you fast and furious,” says Staley, who blogs at awesomecancersurvivor.com. “You make your decision for treatment. You get to the end of the treatment plan, and you get a pat on the back and off you go into the world. I’ve been through this three times, and the ‘after’ part is the hardest. You are pushed back into the real world and you have to redevelop your framework for connecting. That’s what this community has done, to prop me up post-treatment, to get me back into the real world.”
The Internet is teeming with online support groups, of course, including dozens just for breast cancer, Schoger says. Hundreds of cancer survivors across the USA now blog about their experiences.
Online communities can be especially powerful for those with rare diseases, who often may not be able to find other people with their condition in their communities, says Terry Lynn Arnold, of Friendswood, Texas.
Arnold, who has a rare type of breast cancer called inflammatory breast cancer, says she has formed close bonds on Facebook with women she would likely never have met in person.
Doing their homework
BCSM stands out from most other support groups, however, because of its rigorous focus on medical evidence, Attai says.
Given that myths and misinformation can spread like wildfire online, Attai says it’s crucial for BCSM to provide accurate information that’s supported by strong science. The group regularly dissects the latest research and routinely recruits experts. Some of the more science-heavy topics have included clinical trials, hereditary breast cancers and how to avoid “voodoo medicine.”
In addition to Miller and Becker-Schutte, guest experts have included Matthew Katz, director of radiation oncology at Lowell General Hospital in Massachusetts; Julie Gralow, director of breast medical oncology at the Seattle Cancer Care Alliance; and St. Louis breast surgeon Diane Radford.
Although the group has plenty of compassion for people with cancer, members have little patience for hecklers, self-promoters or spammers, Staley says.
“There are plenty of angry communities on Twitter, but we’re not one of them,” Attai says. “If someone wants to pick a fight, they will quickly learn that’s not what we are about. If someone wants to come and promote broccoli extract (as a cure for cancer), we will call them out on that, and they will go elsewhere.”
Connecting across platforms
Attai and other doctors say the chats have given them a better sense of what patients are going through, and “how much my patients were holding back from me.”
And while the community may be virtual, the emotions expressed are palpable, especially when participants are in crisis, or grieving the loss of a loved one, Schoger says.
Last February, BCSM lost two of its members in one day. Organizers scrapped their planned chat and devoted the entire hour to remembering the two women. “We had what can only be called a virtual wake,” Schoger says.
And while BCSM isn’t political, the community has developed a strong voice on key issues in breast cancer. The group regularly criticizes “pinkwashing,” or the commercialization of breast cancer, which is invoked throughout October to sell products. Breast cancer bloggers are taking up the issue, as well, so much that “pink-ribbon fatigue” is becoming a common phrase.
Members of BCSM are also “fearless friends” to women with metastatic disease, which has spread to other organs and is incurable. Such women often feel unwelcome and abandoned by other breast cancer groups, Attai says.
“It seems like the community as a whole have turned their backs on men and women with metastatic breast cancer,” Attai says. “If you don’t fit into this narrow window with pink, ‘happy’ cancer, then the community has no place for you.”
Partly due to efforts like BCSM’s, women with metastatic disease say their concerns are far more visible this year than just a year ago.
BCSM’s founders say they would love to help other patients start or expand similar communities. Patients with very aggressive kinds of cancer, such as ovarian or brain tumors, often aren’t healthy enough to form the sorts of advocacy groups that exist in breast cancer, Staley says. Often, these patients go immediately into aggressive treatments, which can make it difficult for them to organize support groups.
There are more than 2 million breast cancer survivors alive today, however, and many of them are relatively young and tech-savvy, she says.
Creating more communities like BCSM, however, would require finding moderators who are equally compassionate, dedicated and informed, Becker-Schutte says.
“They’re pretty amazing,” Becker-Schutte says. “They are doing for the community what they wish had been available for them in their initial diagnosis and treatment.”
Coming up on Twitter
Join the discussion about breast cancer screenings #abcDrBchat at 1 p.m. Oct. 30.
I first met Li in February 2005 at a conference table with a great breast cancer support group. The group was for early stage breast cancer and everyone in the group that day were all in the middle of chemotherapy while I was about to start my first round of adriamiacin and cytoxin. I had to do chemo because they found the cancer in my first lymph node. I had no problem undergoing a surgical lumpectomy, sentinel node biopsy, or axillary dissection, but when I heard I needed to do chemotherapy and I would lose my hair, I knew I needed some help.
It was ironic that in November my hair stylist of several years chopped my hair very short when I asked her for a little trim. I was furious that my long hair was gone, so I went and got hair extensions until my hair grew longer again. I told the group I had extensions and Li picked up immediately that I was not going to do well losing my hair.
The next time I saw Li was in my oncologist’s office when I was about to leave. As I looked up from my papers she came out into the waiting room. I saw her and immediately gave her a huge hug and realized she went to the same office with a different oncologist.
Since she was alone I asked her how she was getting home and she said she was going to call a cab. Li lived in Santa Monica near the oncology office and managed to get around by bus, friend’s rides or taxis. I offered her a ride in my car parked far away. As we walked she was getting out of breath, because her red cells were very low from the chemo, but I kept telling her we were close to the car.
We started calling each other and found that we had a lot in common. I had a graphics arts background with a degree in architecture and she had worked as a designer at the Smithsonian. She left her job taking a very early pension and after seeing the Pentagon in flames from her apartment window on 911. She moved back to California where she and her ex-husband had lived before she went to DC.
The day my hair fell out we spent the day on the phone talking for hours. She was so supportive since she knew this was something I was not comfortable with at all. From that day forward we spoke with each other practically every day, and it was so comforting for both of us going through chemo together. Her regimen was adriamyacin every 3 weeks for 6 rounds totaling 18 weeks of treatment. Mine was “dose-dense” adriamyacin and cytoxin every two weeks for four weeks, followed with taxol every two weeks for four weeks totaling 16 weeks of chemo.
We talked about breast cancer and chemobrain plus our lives, side effects, research and managing to get through treatment, and we thought we knew a lot about breast cancer. We went out for meals together and one of our favorite places to eat was a Chinese restaurant run by a family we called “Lucy’s”, since Lucy always served us while her mother was in the kitchen. We both had terrible stomach issues during chemo. I had trouble keeping any food down and her food just seemed to run out of her little body.
We became extremely close because we were experiencing the same “trauma” at the same time. We would lose ourselves in conversations and never missed a Saturday to get together. We could both talk without our wigs on and I laughed when she made fun of me for holding on to whatever strands of hair would stay on my head. Truthfully, I did look a little bizarre with 20 stands of knotted up blonde hair and probably should have just had my head shaved!
She also helped me through the crying jags since my hormones were going crazy. When one of my front crowns kept falling out, she made me laugh at myself being bald and toothless as I would call the dentist to glue the tooth in one more time till I finished treatment and could take care of the tooth properly.
We both needed surgeries and we never missed being the person to go with each other for surgeries. Li also got a dog named Shelby who is part shih-tzu and part maltese. Li had moved from a studio to a one bedroom so she could have more room and be able to take care of Shelby. She bought puppy gates and it was so much fun to visit her with Shelby, who I fell in love with from the day I saw her fitting in the palms of Li’s hands.
When Li had some cysts that she was not sure were cancerous she had an oophorectomy. Fortunately they were not cancer. She woke up crying which was so unusual for her. I think her mind knew that her female plumbing was missing and her tears were her hormones and her mind realizing that her breast and her ovaries etc. were missing.
In February 2007, I had a recurrence in the same breast, which my breast surgeon said had to have a mastectomy. I had finished treatment a year and a quarter earlier and had several biopsies that were false alarms in both breasts. My breast surgeon handed me business cards of plastic surgeons that he worked with.
The first surgeon saw me right away and it turned out he did Li’s reconstruction when she had her mastectomy and her results were awful. He wanted to do a Diep Flap (taking the tissue from my tummy and putting it in my breast). He also wanted $30,000.00 dollars over my co pays with my insurance to do the procedure. I ended up picking the plastic surgeon that accepted my insurance, but that decision left me with many extra surgeries because I had a radiated breast that caused multiple surgical failures.
Like every other surgery, when I had the bilateral mastectomy surgery, Li was with me. I encouraged her to go back to the first surgeon and get him to fix her botched job. She had her surgery after mine and when I went to talk to her doctor the first thing he said to me was “It’s very hard for a woman to lose her breasts”. I could not believe he didn’t recognize that I was in his office only two months before Li’s surgery. I said “Tell me about it . I have had a bilateral mastectomy with reconstruction”. The next thing he said was that Li’s insurance probably wouldn’t pay for her stay that night. I explained she had a pre-approval letter and let him know that I saw him for a consult making him have to say he remembered me even though he didn’t. Awkward!
I knew how organized Li was with her paperwork, so when I went to her hospital room after speaking with her surgeon. Li pointed me to the paper with the pre-approval from her insurance. I called her insurance right from the hospital to make sure they were covering her hospital stay for the night. The plastic surgeon was wrong.
The next morning, Li had trouble breathing and she felt very out of sorts. We called the nurse who got hold of her Doctor. He said “When I did the surgery I may have kind of sort of nicked her lung”. I asked him, “In what percentage of patients does this occur”? He replied, “only her”. I asked what they were going to do about it and he told me they would do a surgical procedure right in her hospital room by surgically placing a large tube in her side to build her collapsing lung back up. I couldn’t resist asking, “Are you sure her insurance will cover her to stay at the hospital longer after the procedure”? Of course the answer was yes, and I am so glad Li knew to get approval to stay overnight for her procedure, because if she had gone home and her lung collapsed I don’t want to think about how that would have gone down.
I stayed with my friend Li to hold her hand as long as I could while they prepped her for the surgery. They told me I had to leave the room while they did the surgery or I might faint. They don’t know me. I am very good in hospitals and I can handle blood and surgery.
When I needed my tissue expanders out and got my first implants, Li was with me. That surgery eventually failed. After my recurrence I was very beaten down and I really wanted to spend some time with my family living in Tennessee. I ended up selling my LA condo and moved part-time to Nashville so I could be closer to them. But I kept my doctors and especially my oncologist in LA. I was lucky that another great friend in the group of 8 women breast cancer survivors (that now met at each other’s houses), rented a room to me in LA, so I could travel back and forth.
In February 2009, I flew to LA for the monthly group meeting and hung out with Li for most of the time like we always did when I came to LA. We would go together to doctor appointments, restaurants, meetings and I also would bring my computer over and get work done while she did her work since she had wifi. She looked the healthiest I had ever seen her. She had gained some weight and her hair looked so beautiful and healthy. I told her how awesome she looked and we were so glad we made it through all that treatment. Li mentioned the last time she saw her oncologist she was told that it was a great sign that she was 4 1/2 years out with her pathology.
She was supposed to have her appointment with her oncologist when I was there and we were going to go together, but her oncologist had to change it, so Li changed the appointment for her birthday on February 19th. Li told me she had a small rash on her breast that she thought her bra must have caused. We both ate very well as we were enjoying the fact that our stomachs were returning to a new normal.
I returned to Tennessee and I called her later in the day on February 19th to wish her a Happy Birthday, assuming her oncology appointment went well since she looked so healthy. Li was a mess. She said that her doctor sent her to her breast surgeon for an immediate biopsy and the look on her doctor’s face made her feel like this was extremely serious. It was. The rash was skin legions from Metastatic Breast Cancer (MBC) and she also had it in her bones. She was Stage IV and had to start chemo again right away.
I ended up moving back to LA permanently in July 2011. I was very glad that I could be with Li so much during the last seven months of her life.
Li’s strength, courage and determination throughout her treatment were amazing. I felt awful especially thinking back to the day when we were going through primary treatment and she was going to have what I thought was her last chemo the next day. We were together in front of our favorite restaurant “Lucy’s” in Santa Monica. Li’s red cells were awful so she had to sit down on a bench. I said to her “Li this is the last chemo you will ever have to do again in your life”. Sadly I was wrong.
Li worked very hard putting her affairs in order before the cancer traveled too far for her to have treatment anymore. As soon as she was sick with MBC she asked me if I would take care of her dog Shelby. I said, “of course” yet I hoped she was around for a very long time to enjoy the joy that Shelby brings. I remember when she was getting close to the end and I asked her if she was afraid. She said, “I’m not afraid of death but it’s the indignity of all of it that bothers me.” I knew that losing her mobility and not being able to do things for herself plus ending up thin, bald, and with a huge stomach from her liver metastasis building up fluid was no picnic. Luckily we found the most wonderful caretaker, Cora, who Li and I adored. She was such a comfort to Li constantly cleaning and making Li’s home beautiful plus running any errands Li needed done.
A few days before she died the caretaker Cora, Li and I had dinner. Li sat up in her hospital bed that we had in her room at home while Cora and I sat in chairs surrounding her. I said, “Li remember when we first went through chemo and we thought we knew so much about breast cancer? Boy were we wrong”. Li and I just laughed. We were trying to be normal having dinner, but truthfully there was nothing normal about anything that was going on. Li was getting more tired and going from moments of extreme clarity to moments of disorientation and confusion.
The last night of her life I came to join Li for dinner and she was particularly tired and didn’t feel like eating. I held her hand for some time while she went in and out of sleep. She said to me “I always love when you come by for dinner”. I told her that I loved her and was so grateful for our friendship, which I said at the end of so many of our conversations. She said she loved me too and went back to sleep.
She died that night and I received the call from another great friend who had also been by Li’s side through this daunting process. Li donated her body to science and did not want a funeral. When they came to get her body for UCLA, I was so impressed by how dignified they wrapped her up in a beautiful white sheet.
Since I promised her I would take care of her dog Shelby, I took Shelby and all of her things back to my home that day. I miss my friend a lot. Thanks to her incredible gift of Shelby I feel Li’s presence every day.
Li’s death from MBC along with the friends I know who have cancer that has metastasized has made me determined to make an impact on seeing that we have an end to this disease.
I know that 1 in 8 women will get breast cancer in their lifetime and 109 women in the US die a day from breast cancer. (I haven’t forgotten that there are also men that get breast cancer too). This means one death every 14 minutes. With each person there is an important story.
I feel guilty sometimes that it wasn’t me instead of Li. It still could be me. That’s what is so cruel about the disease. We think we know so much more about the disease, but when it comes to the loss of lives we haven’t made much progress. True we can keep someone alive longer with chemotherapy drugs, but eventually cruel cancer figures out a way to outsmart the drugs so they no longer work.
My fearless friend Li, was not just another statistic. We had an incredible bond as a result of breast cancer and we cemented our friendship with being supportive of each other as breast cancer was always with us.
I know her spirit lives on through the memories of her. I especially get comfort every day from Shelby. I am truly lucky that I got to know Li and I treasure the time that we got to spend together.