When Mother and Daughter Both Have Breast Cancer

A Seattle mother and her daughter both have breast cancer. They support each other through arduous treatments and the pain of watching a loved one suffer.

Sourced through Scoop.it from: www.wsj.com

Great Article by Sumathi Reddy about Beth Caldwell and her mom Colleen ‘Susi’ Stevens  supporting each other while both are going through breast cancer treatment. I am so lucky that I am with Beth at the San Antonio Breast Cancer Symposium and I can’t wait to blog more about this incredible experience.

To learn more about the great work Beth is doing for Metastatic Breast Cancer please go to http://www.metup.org. To see her blog  go to: http://cultofperfectmotherhood.com/

————————————————————–Sourced Sourced through Scoop.it from: www.wsj.com

By Sumathi Reddy

Colleen ‘Susi’ Stevens, left, and her daughter Beth Caldwell together at Ms. Stevens’ final chemotherapy session in November at a Seattle hospital. ENLARGE
Colleen ‘Susi’ Stevens, left, and her daughter Beth Caldwell together at Ms. Stevens’ final chemotherapy session in November at a Seattle hospital. Photo: Ian C. Bates for The Wall Street Journal

In between the seamless stream of conversation between mother and daughter—jumping from holiday gifts for the children to the adults’ lifetime Girl Scouts membership—they chat about their breast cancers.

Sitting together at a Seattle restaurant, Colleen Stevens recalls the time the two went wig shopping. Her daughter, Beth Caldwell, eventually decided to go bareheaded. They talk about their shared oncologist, Eddie, as if he’s a relative. (Ms. Caldwell exchanges texts with him and they are working on a book together.)

The mother and daughter barely eat the Gorgonzola and wild mushroom pizzas sitting in front of them. “The chemo,” says the 67-year-old Ms. Stevens, who goes by the nickname Susi. “It kills your appetite.”

Ms. Caldwell, who is 39, was diagnosed in March 2014 with Stage 4 metastatic breast cancer that has spread to her brain, liver and bones. She is continuing treatments but knows her reality: The cancer isn’t going away; it will eventually take her life. Metastatic breast cancer patients live an average of three years after diagnosis.

Just over a year after her diagnosis, Ms. Caldwell’s mother was diagnosed with Stage 2a triple negative breast cancer, a particularly aggressive type.

Their cancers aren’t related, nor are they linked by known genetic mutations.


“You have to live fearing that the cancer is going to come back,” Ms. Caldwell tells her mother. “And I have to live knowing it’s going to kill me.”
Beth Caldwell, who has become an advocate for cancer-research funding, wrote in a blog post: ‘People ask me why I’m so committed to getting more research done on metastatic breast cancer, knowing that I’m not likely to live long enough to benefit from it. I don’t want my mom to die of breast cancer. It’s always been personal for me, but it’s even more personal now.’ ENLARGE
Beth Caldwell, who has become an advocate for cancer-research funding, wrote in a blog post: ‘People ask me why I’m so committed to getting more research done on metastatic breast cancer, knowing that I’m not likely to live long enough to benefit from it. I don’t want my mom to die of breast cancer. It’s always been personal for me, but it’s even more personal now.’ Photo: Ian C. Bates for The Wall Street Journal

One in eight women in the U.S. will be diagnosed with breast cancer in her life. Experts say it isn’t rare for mothers and daughters to both have the disease. About 7% of breast cancers are in women under the age of 40, who tend to have more aggressive cases.

The risk of breast cancer doubles if one has a first-degree relative—such as a mother or daughter—who has also been diagnosed. Oncologists say only a small portion of these cases are linked to inherited mutations of the BRCA1 and BRCA2 genes.

“We definitely see family clusters and even when we look at 17 or 23 genes we’re still not seeing an underlying gene mutation,” says Jennifer Litton, an associate professor in breast medical oncology at MD Anderson Cancer Center in Houston. “So it’s probably more than just one gene or a perfect storm of genes and other factors in the environment.”

“I think the moms who have gone through chemo, they’re scared for their daughter. They know what she’s facing,” Dr. Litton says.

Edmond Marzbani, a 35-year-old, soft-spoken doctor who is medical director of oncology at Northwest Hospital & Medical Center, part of the Seattle Cancer Care Alliance, is Ms. Caldwell and Ms. Stevens’ oncologist. “They look out for each other. They’re fairly well versed in each other’s medical care,” says Dr. Marzbani, who said the two patients have given him permission to discuss any details of their cases with each other.

Dr. Marzbani says he sometimes worries bad news from one patient will affect the other emotionally. But he knows that ultimately both of them would be upset if he wasn’t honest. “They are so close in this particular situation that it would be pointless,” he says.
Colleen Stevens, left, and daughter Beth Caldwell on an earlier trip together to London. ENLARGE
Colleen Stevens, left, and daughter Beth Caldwell on an earlier trip together to London. Photo: Beth Caldwell

Ms. Caldwell, a former civil rights education attorney, over the past year has helped found MET UP, a nonprofit that lobbies for more funding for metastatic breast cancer research. She and her mother live 20 minutes apart in the north end of Seattle. Her parents live in the same green ranch-style house in the quiet middle-class neighborhood she and her older sister grew up in.

Ms. Caldwell seems relentlessly cheery. Her parents—Ms. Stevens and her husband, Leigh—seem to share her sense of humor. Cancer jokes aren’t out of bounds.

“It’s either laugh or cry and we choose to laugh,” says Mr. Stevens, a 67-year-old retired Boeing computer programmer. But ask him how he copes and he pauses. “There are actually days I don’t cry,” he says.

Ms. Caldwell and her husband have two children. Maggie recently turned 4; James is 8. Her husband—James, who goes by J—picks up a lot of the parenting work when she is too fatigued or travels to a conference or to lobby Congress as part of her advocacy work. He comes to treatments and doctor appointments.

“J is my rock,” says Ms. Caldwell. “Divorce in the cancer world is ridiculously common. But I have never had any worries that J would cut and run.”

The hardest part, Ms. Caldwell says, is knowing that death is coming and being able to explain that to her children.

“Maggie is so small, she doesn’t remember a time when Mom didn’t have cancer,” she says. “Jim understands that we don’t know how long Mom has.” Her son talks about wanting to be a cancer researcher, about finding a cure for his mom.

Ms. Caldwell was 37 when she found a lump in her breast. She told her parents the news over the phone the day she was diagnosed. “They were scared, and supportive, asking how they could help and offering to watch the kids and bring us food,” she recalls. When she found out a week later the cancer had spread, she was too emotional to tell them and had her sister break the news.
Edmond Marzbani, medical director of oncology at Seattle’s Northwest Hospital & Medical Center, is Ms. Caldwell and Ms. Stevens’ oncologist. ‘They look out for each other. They’re fairly well versed in each other’s medical care,’ he says of the two patients. ENLARGE
Edmond Marzbani, medical director of oncology at Seattle’s Northwest Hospital & Medical Center, is Ms. Caldwell and Ms. Stevens’ oncologist. ‘They look out for each other. They’re fairly well versed in each other’s medical care,’ he says of the two patients. Photo: Edmond Marzbani

Ms. Caldwell has an unusual neuroendocrine form of breast cancer which usually starts in the pancreas or lungs. Dr. Marzbani recommended aggressive treatment. She had a harsh regimen of chemotherapy for three months. A single mastectomy was followed by radiation to the chest wall in the fall of 2014.

In April Ms. Caldwell learned the cancer had spread to her brain and liver. She underwent radiation therapy on her brain to shrink the five tumors found there. Over the summer eight more were found in her brain. She underwent a second round of chemotherapy to combat the liver tumors.

Around the same time, Ms. Caldwell got a Facebook message from her mother informing her she had a breast biopsy. “I was like, ‘Mom, you don’t tell me that by Facebook!” She immediately texted Dr. Marzbani. “If my mom has cancer, can you see her next week?”

Ms. Stevens’ cancer hadn’t spread to her lymph nodes, which means there is a lower risk of it coming back as metastatic cancer. But it was very aggressive. She had a lumpectomy in August. She started her chemotherapy in September just as Ms. Caldwell’s treatments were ending. “We joked about doing chemo in adjacent rooms,” Ms. Caldwell says.

In November, Ms. Stevens was in the hospital for her final chemotherapy treatment. Ms. Caldwell jumped up to get her mother a blanket.

“Do you know where it is?” her mom asks.

“Of course!” Ms. Caldwell exclaims.


Beth Caldwell, top right, and her husband, J, in a selfie with their children Jim, 8, and Maggie, 4, from their family trip to Disneyland last year. Ms. Caldwell, who has metastatic breast cancer, says it is important to her to make plans and travel. ‘I’m going to have future things to look forward to. It helps you keep going,’ she says. ENLARGE
Beth Caldwell, top right, and her husband, J, in a selfie with their children Jim, 8, and Maggie, 4, from their family trip to Disneyland last year. Ms. Caldwell, who has metastatic breast cancer, says it is important to her to make plans and travel. ‘I’m going to have future things to look forward to. It helps you keep going,’ she says. Photo: Beth Caldwell

When Ms. Stevens’ hair started falling out from chemotherapy, her daughter told her to just shave it off. The mother felt devastated, however, and called her daughter and said, “When I look in the mirror I see an old man.”

“We got a wig that made her feel human again,” Ms. Caldwell says. “It looks great on her.”

Ms. Stevens says it has been tremendously helpful having a daughter who knows the ins and outs of cancer. “It’s been nice for me in that way but it has been hell having a daughter with cancer,” she says. “You never expect your kids to die like that.”

The chemotherapy has been rough on Ms. Stevens. The side effects, such as fatigue and nausea, have kept her mostly home. She has been hospitalized twice for fevers. Last week she saw her radiologist. They want her to start radiation treatments soon.

“I’m going to stop treatment in January but that doesn’t mean everything is OK,” Ms. Stevens says. “It just means we’re going to keep testing and testing and testing to make sure” it doesn’t return.

The five-year survival rate for the type of breast cancer Ms. Stevens has is about 75%, Dr. Marzbani says.

Ms. Caldwell started an oral chemotherapy pill called Xeloda in October. It is gentler than the intravenous chemo she previously had and can penetrate the blood-brain barrier. Preliminary results look good. A brain MRI last week showed the brain tumors appeared to be gone. It was the best news she has had in a while.

“Her most recent scans look promising,” Dr. Marzbani says.

Her mom was ecstatic. “We really hope it continues to work and that she can hold it off,” says Ms. Stevens. “We’re still living under the pall of her dying. I think I will be more relaxed or not quite as stressed once we know that my half of the problem is gone. But of course there is the constant strain of her half of the problem.”

Little things keep Ms. Caldwell occupied. She talks about middle schools for her son. Next year the family has booked a cruise from New York to England and Scotland. “It’s always in the back of your mind that this may not happen,” she says. “But you plan it anyway.”

After Ms. Caldwell was first diagnosed, friends of hers were planning a group Caribbean cruise and asked if she and her husband wanted to come. That was 18 months away. “It felt like it was a way of saying, I’m not just going to live in this awful moment. I’m going to have future things to look forward to. It helps you keep going.”

Next month they will go on that cruise. Her parents will baby-sit.

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

US Capitol Dome Houses of Congress Washington DC
US Capitol Dome Houses of Congress Washington DC


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

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

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

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

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

NAN_header2aThis is a pre-written letter that you can send to let your Senators know how important it is that we don’t lose funding for the very successful Breast Cancer Research Program. funded by the Department of Defense. It only takes a minute to put your name and address in and your email will be sent to Congress.

See on Scoop.itBreast Cancer News

DOD BCRP in Jeopardy TODAY– Ask Senators to Oppose Amendment #1482

NAN_header2a**URGENT**: Call your Senators RIGHT NOW to save the Department of Defense ‪#‎BreastCancer‬ Research Program (DOD BCRP).
Senator John McCain (R-AZ) is offering an amendment to the National Defense Authorization Act (NDAA) on the Senate floor TODAY which would do irreparable damage to the Department of Defense Breast Cancer Research Program.

DODPlease call your Senators NOW and give them the following message:
1. Please vote against the McCain Amendment #1482 to the NDAA
2. This amendment would do irreparable damage to the DOD BCRP – one of the most efficient, innovative and successful government programs.
3. As a breast cancer survivor/activist, the DOD BCRP is incredibly important to me and has produced results which have directly benefited survivors like me, including those who have served and currently serve our country in the armed forces.

Find your Senators here: http://www.senate.gov/senators/contact/

OR use this Link: http://www.capwiz.com/aacr/dbq/officials/
Learn more about the DOD BCRP: http://www.breastcancerdeadline2020.org/…/priority-2-150-mi…

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

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

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

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

What have we learned about Metastatic Breast Cancer, Charlie Brown?

Katherine O’Brien explains everything so well in this piece about metastatic breast cancer.. Read the whole thing… It’s brilliant! Thank you Katherine!


Reblogged from I HATE BREAST CANCER.

What have we learned about Metastatic Breast Cancer, Charlie Brown?

Did-You-Know-Logo-SmallI am coming up on my fifth year of living with metastatic breast cancer. I am fortunate–I started with a low volume of bone mets and five years later my disease has remained fairly indolent. Not everyone is so lucky–and believe me, it is only luck. It isn’t like I tried harder or did anything special–I was just “lucky” enough to have a subtype of breast cancer (ER/PR+; HER2-) and bone-only disease that has been fairly low key. I try not to take this for granted.

As I think back to what I knew about breast cancer in 2009, I am embarrassed. I really didn’t know anything. I remember puzzling out the facts of my case–as though I was in high school muddling through my Spanish homework–constantly stopping to look up words  and rereading everything. N0w I like to think I have a basic fluency in breast cancer, but I also realize there is so much I don’t know.

When I was first diagnosed with metastatic breast cancer, I wanted set the world on fire. I think I have calmed down a little bit. I hope I have become more focused.

Prior to my own diagnosis, I thought of breast cancer as one disease. I didn’t realize breast cancer has three main subtypes:

  • ER/PR+; HER2- (accounts for 65% of breast cancer cases)
  • ER/PR+; HER2+ (accounts for 20%  of breast cancer cases)
  • ER/PR-; HER2-. (accounts for 15%  of breast cancer cases)

Inflammatory breast cancer, the kind my mom had, isn’t a breast cancer subtype, but refers to an unusual presentation–there’s no lump, the disease is generally found at Stage 3 or Stage 4.

I knew that breast cancer had stages and that Stage 4 wasn’t good. I didn’t realize that no one dies from early stage breast cancer–but that 20 to 30 percent of those with early stage breast cancer will go on to have a metastatic recurrence.

I did not know that a de novo presentation–someone who is metastatic from first diagnosis, is the exception rather than the rule. About 90% of those with metastatic breast cancer were previously treated for breast cancer; only 10% of us are metastatic from the start.

I did not realize that our US cancer registry does NOT track breast cancer recurrence–even though that is how most people join the metastatic breast cancer ranks. The NCI and SEER databases record only incidence, initial treatment and mortality data.  What happens in between — in terms of recurrence and the exact number of people living with metastatic breast cancer — is undocumented. As Musa Mayer says, ““It is as if these metastatic [people]  are invisible, that they literally don’t count. And when we don’t count people’s needs, we can’t provide or plan for them.”

I did not know breast cancer could spread to your bones, liver, lung or brains. I knew it was bad if it spread beyond your lymph nodes.

I did not know that having the “worst” kind of breast cancer doesn’t necessarily mean you will have chemo right away. I assumed ALL cancer patients had chemo.  In my case, I will not have chemo until all of  the less toxic options have been tried first. This both because of my subtype ER/PR+; HER2- and because my cancer remains under good control. Someone with triple negative breast cancer can’t use  the anti-hormonal drugs (Tamoxfin; Femara, etc) that I do–their cancer would not respond.

I did not know having metastatic breast cancer means you are a patient for life. Or that the average patient may receive eight or 10 different treatment regimens in sequence. When one drug fails, you move on to the next one. Most people with MBC see their oncologist every month. If  the cancer is in good control, these appointments might be less frequent. But for most it is at least a monthly visit.

I did not know every three or four months I would have scans to see how if my treatment was working. This is anxiety provoking and hard to understand if you have never experienced it.

I didn’t know my scan results could be categorized as No Evidence of Disease (NED), Stable (nothing got bigger or smaller, everything stayed the same); or Progression. I have never been NED but I have been stable, which is good, too.

I did not know that in some cases, people can live with metastatic breast cancer for a long time. I assumed everyone with metastatic breast cancer immediately got really sick and soon succumbed to the disease. While that does happen to some people, it is not universally true. Prognosis depends on many factors, including disease subtype and tempo.

I knew that not having children increases one’s risk for breast cancer, probably because of the unopposed flow of estrogen. I didn’t realize HAVING children increases a woman’s risk for breast cancer for about 10 years after giving birth. I would be willing to bet many women’s doctors either don’t know this or assume that this is a rare occurrence.

I assumed that being diagnosed with metastatic breast cancer at age 43 put me on the younger end of the MBC spectrum. I have sadly discovered this is not the case. I have met women in their 20s with metastatic breast cancer. While it is true that breast cancer is a disease of aging, I think members of the general public would be shocked to hear from some of these young people. Anecdotally, my experience is that there quite a few young women with MBC–too many, in any case.

I did not know that although breast cancer is diagnosed in far more white women, black women are far more likely to die of the disease.

I knew that men could get breast cancer but I  assumed this hardly ever happened. I have met (in person and online) at least five men with metastatic breast cancer. I am pretty sure these men and their families take scant comfort in the “rare” categorization.

I assumed that if one needed financial aid, one could merely call upon one the well-known cancer associations or national breast cancer groups. (Let me stress I am fortunate that I have not had to seek financial aid, but I know many who have.) I have learned that few national groups disburse funds. Typically one has to get help  from a local chapter or affiliate or community group and once those funds are gone for the year that’s it. I have learned most aid is fairly modest–getting help will require applying to many different sources.

I did not realize how poorly funded ALL metastatic cancer research is.

I did not know that a  drug that PREVENTS metastasis may not SHRINK a large, refractory tumor. It has a different mechanism of action that is NOT picked up by the clinical trial system. I did not realize some of our best metastatic researchers are advocating for a new approach to clinical trials.

I did not realize that most Breast Cancer Awareness Month coverage focuses almost exclusively on those with early stage disease. People are either afraid or our reality or prefer to ignore it in favor of  “feel-good” stories. Of course, we’ve also seen the other extreme–someone assuming ALL people living with MBC are on their deathbeds, which isn’t necessarily true either.

I did not know the  incidence of stage IV breast cancer—the cancer that is lethal—has stayed about the same; screening and improved treatment has not changed this.

I did not know breast cancer kills 40,000 annually in the US and half a million worldwide. Breast cancer remains the second leading cause of cancer death for women in the US, and it is the leading cause of cancer death for women globally.

Most of all, I did not know that there was so much that I did not know!


Happy New Year – Flying Home

I am sitting on a plane with wifi and reading other breast cancer blogs which I did during a wonderful holiday with my family. They have me thinking a lot. My need to write today has to do with the fact that as I take this flight home I am flooded with memories and feelings of my past flights going back to California when I was living closer to my family on the southeast coast. I flew many times on this flight to California running to my friends especially my very close friend Li who went through chemo with me and had stage IV MBC , while on the east coast my brother was going through stage IV esophageal cancer. His health climbed faster downhill then my friend because of the stage at which he discovered his cancer.

I have been so happy working away at being a patient advocate and doing everything I can to make a difference and I am reading different things and all I can say is this may sound crazy but for me it was so much easier being the patient in jeopardy going through my primary chemo at an earlier stage than having to watch my brother and best friend go down their line of chemo drugs and disease progression. I ask myself over and over why it wasn’t me and why it was them as I stood by and they let me in fearlessly clinging to the joy they could find in life and wanting to have as much quality of time in life with them.

After I had breast cancer twice in California I decided to move closer to be with my family, because I just was drained from all the constant treatment and I missed my family. Little did I know seven months later my father would find out that he had pancreatic cancer and luckily I had moved close to the family and was able to be with him, since he died 10 days from finding out his diagnosis. I think in some ways he was better off not knowing that he was so sick until the end.

Being with my brother and my best friend as they went down their line of drugs was just as special, yet at the same time I have so much guilt that it wasn’t me. I luckily rented a room in California so I could fly back and forth and keep my medical Doctors in California.

gene-technology-7830After my brother died I moved back to California as everything shifted and luckily I had been at the right place …at the right time…while my friend got close to the end. I am on another flight knowing this cycle will not stop. A very close friend has Stage III – IV lung cancer and is such an inspiration. I have a few more friends who are going through Stage IV breast cancer. I have stepped in cancerland and there is no turning back. I am not Stage IV and for that I should be grateful and (don’t get me wrong) I am but it’s hitting me as I return to my home. I am saddened by the sheer loss of things around me.

At the same time, I refuse to keep complaining and continue forward with all of my advocacy work to make a difference…It’s just that I am in a moment where I feel like that rat on the ferris wheel as more people get bad news. Yet my father, my brother and my best friend all gracefully lived in the moment as much as they could to hold on to joyous days of life while they knew they were going to be taken away from their disease. I asked my brother if he was scared and he said he wasn’t….Life…death…he just accepted to his fate and made the most of what he had. I asked my best friend and she said she wasn’t scared either. To her she was looking forward to seeing people when she died.

With these things happening around me I can’t help asking myself why them? At the same time I refuse to push myself in to the dreaded corner of anger and resentment at fate and get a grip knowing I must be smart enough to make the most of whatever time I have. In the back of my mind one of the bloggers was angry because they are stage IV and they were sick of hearing they should live in the moment. I think the reason she was angry is the word “SHOULD”. Instead we all COULD try to live in the moment.  If we don’t and we can’t make the most of out time while we are here, then why bother fighting to live. This is it. Take it or leave it. I have to try to make the most of my moments no matter how little control I have over what Stage of disease or peril I or my closest friends are in. At the same time, I am not trying to pat myself on the back as much as be grateful I have the ability to make a difference and while I believe I have NED (no evidence of disease) make the best of it. My father made the best of his life and had no idea how sick he was. I think he was better off not knowing until the end.

It’s not the analogy of “I could get hit by a bus” at any time before my friends who are in Stage IV cancerland know the bus is coming as much as why waste time getting so upset that I bring a harsher depression on myself as I have enough of that from all the hormones that have been stripped from me to theoretically keep me NED. The truth of the matter is I can wallow in anger and resentment or forge ahead with optimism and lack of fear for what is happening inside my body and live my best life. That is truly the only way I can make sense of all that is surrounding me.

Honestly I am proud of how I talked myself out of wallowing in self pity as I return to California after a wonderful holiday with my family. I am also thrilled that I have this wonderful machine and social media to help make the most of this flight as I plan to return to all the enormous tasks I have facing me and get back to my routine while I know there is so much work ahead of me to make a difference in Breast Cancer Land. And whether you are healthy, having health issues, in cancerland, affected by cancerland or just reading this because you care about me and what I have to say…thank you for letting me use this platform to express what is happening around me.

Meanwhile it’s a new year. Make the most of it, love yourself and try to enjoy everything around you no matter where your body or mind is at. This also includes what your loved ones are going through. That is the only way all of us can live our best lives and appreciate so much of what we have.

Breast Cancer Tweets | Susan on Twitter

I found this program while searching on Twitter. I was trying to make it an icon on the side of my blog and instead it turned in to this post. You don’t need to know how to use Twitter to see what is trending for me on Twitter, yet you can take a peak by following this link and see the things that I have talked about on Twitter.

Thank you! – Susan

Breast Cancer Tweets | Susan Twitter.

ASCO Quality Care Symposium

It was very exciting to be invited and included in ASCO’S Quality Care Symposium. ASCO invited patient advocates seeking our input. I was so impressed with how much work is being done to enhance quality standards to improve cancer care. The meeting ranged from big organizations like the MD Anderson model to a small practice run by Carolyn Hendricks MD who is a local expert at Suburban Hospital on breast cancer and ovarian cancer patients.

ASCO has developed a system called “QOPI” (Quality Oncology Practice Initiative) which is a system and standard of practice with guidelines that are helping oncology practices improve their quality care. “QOPI’s goal is to promote excellence in cancer care by helping practices create a culture of self-examination and improvement. The process employed for improving cancer care includes measurement, feedback and improvement tools for hematology-oncology practices.”

The symposium had an incredible panel of speakers. To look for value more attention must be paid to palliative care. Studies were done to try to decrease patients visits to the emergency room. A study was conducted be telephone to follow-up with patients after their chemotherapy treatment by calling and asking about their symptoms. In the study when a nurse practitioner called the patient back to discuss the side effects there was a clear improvement in care and reduced costs of patients having to come back to the office for treatment of theses symptoms. When it comes to end of life issues this is an area that needs much improvement.

Michael Kappel from the National Coalition of Cancer Survivorship spoke from the patient advocate perspective. He said, “for survivors transitions are the problem”. There is a need to accept and allow patients as part of the solution. Patients find themselves seeing many doctors as a result of side effects from their care. To carry out this collaboration, communication, and shared decision-making are necessary. Informed patients make decisions and want to actively be involved in their care.

The good news is that now that we have moved to computer based systems, in the future we will be able to gather so much more data effectively to improve QOPI. Dr. Stephen Edge  from Roswell Park Cancer Institute mentioned that collaboration is the key to success in improving quality patient care. This was a running theme from many of the speakers. It is important to listen to patients and put oneself in the patient’s shoes.

When Dr Russel Hoverman mentioned that Beth Israel Medical Center opened their Doctors notes to patients for a short time, I spoke up at the mike that as a patient advocate it would be very helpful for patients to see the oncologist’s notes, not just their lab reports.

It is clear that oncologists are working very hard to improve quality care and  they want to include patient advocates in the discussion. ASCO and oncology practices are listening to patient advocates because they recognize our voice has tremendous value in guiding their treatment.

ASCO’S Quality Care Symposium-November 30 – December 1, 2012

I will be attending ASCO’S Quality Care Symposium from November 30- December 1 and will report about it in my next post. Below is a video and article about the symposium.

Research from ASCO’S Quality Care Symposium shows advances and challenges in improving the quality of cancer care

Posted On: November 28, 2012 – 2:30pm

ALEXANDRIA, Va. – New studies released today reveal important advances in cancer care quality measurement, physician adherence to quality standards, and end-of-life care, while highlighting the overuse of contralateral prophylactic mastectomy. The studies were released in a presscast today in advance of ASCO’s inaugural 2012 Quality Care Symposium. The Symposium will take place November 30 – December 1, 2012, at the Manchester Grand Hyatt in San Diego.

Four major studies were highlighted in today’s presscast:

  • Study finds that most preventive double mastectomies occur in women who are at very low risk for contralateral breast cancer: Analysis of two new patient surveys found that two thirds of women with early-stage breast cancer who underwent contralateral prophylactic mastectomy were not at elevated risk for cancer in the contralateral breast; researchers found that women who opted for preventive double mastectomy had a high degree of worry about recurrence.
  • A multidisciplinary team approach to end-of-life care communications leads to reduced use of intensive care among patients with advanced cancer: Researchers found that consultation from a multidisciplinary team increased the election of palliative care and decreased use of more intensive care measures (e.g., long-term ventilation and ICU support) among patients with advanced cancer hospitalized at a comprehensive cancer center over a four year period.
  • ASCO’s quality evaluation program documents significant improvement in adherence to quality standards: An analysis of self-reported data from 156 oncology practices participating in ASCO’s Quality Oncology Practice Initiative (QOPI®) showed that – over a four year period – adherence to many quality care standards markedly improved, especially those involving new standard practices (e.g., genetic testing for tumor mutations, use of new anti-nausea drugs, etc.).
  • A real-time electronic performance tracking system improves adherence to quality care standards for breast and colon cancers: A large study found that use of a quality reporting system developed by the American College of Surgeons was associated with improved adherence to certain quality standards at 64 cancer centers over a four-year period. The electronic performance tracking system evaluated in this study is the first to provide real-time feedback.

“Ensuring that our patients receive the highest quality care possible is a core responsibility of oncology. The studies presented today show us new strategies for measuring and improving our adherence to quality standards,” said Jyoti Patel, MD, ASCO Cancer Communications Committee member. “The findings also provide insight on discussing treatment options for patients with both early-stage and advanced cancers.”

This year’s Quality Care Symposium will include more than 330 abstracts covering topics, such as reducing overuse of tests and procedures, improving patient-physician communication, effectively measuring quality of care, and applying advanced health information technology to improve the quality and value of care.

Please Join the Dr Susan Love Research Foundation and the City of Hope in the How Study

What is the Health of Women (HOW) Study?

The majority of women who get breast cancer have none of the known clinical risk factors. This means we don’t know what causes breast cancer or how to prevent it. The HOW Study is a first-of-its-kind international online study for women and men with and without a history of breast cancer.  We will collect information about your health, your job, your diet, and your family history, among other topics that can help us get a better understanding of breast cancer and its potential causes.  Periodically, we will send you questionnaires about anything and everything. All you have to do is fill them out online. It’s that simple. This is a partnership and we need you for the long haul. The more questionnaires you fill out, the more information we will have that can help us have a better understanding of why women get breast cancer.

Who is HOW?

HOW is all about you and what you can do to end breast cancer. HOW is also about the researchers who can use this data to have a better understanding of ways we can prevent breast cancer. HOW is all of us, working together, to bring an end to this disease. The HOW Study is being conducted at the Dr. Susan Love Research Foundation, in collaboration with City of Hope Comprehensive Cancer Center.

Go to: https://www.healthofwomenstudy.org/Default.aspx