MBCN’s Scan, Treat, Repeat T-Shirts Now On Sale

April 23, 2015
Shirts are $15 at https://www.booster.com/mbcn; allow extra time for processing and delivery

Shirts are $15 at https://www.booster.com/mbcn; allow extra time for processing and delivery

If you’ve attended a recent MBCN conference, you’ve seen our “Scan, Treat, Repeat” tshirts. We are happy our shirts have been a hit! In fact they’ve been so popular, we’ve struggled to keep up with the demand.

Good news! Booster.com has an online ordering set up that might be just the ticket. Here’s how it works: Our shirts can be ordered at https://www.booster.com/mbcn for $15.

Because it isn’t feasible to screen print tshirts on demand, the tshirt vendor doesn’t print the shirts until all orders are received. The shirt company requires site users to run campaigns that are generally three to four weeks long. So, shirts can be ordered up until May 9, 2015. It will then take about two weeks for the vendor to print and deliver the shirts.

In  addition to printing and shipping costs, Booster.com collects a percentage of each sale. We wanted to make our shirts as affordable as possible. The lowest price allowed at Booster.com is $15.

After this trial campaign ends on May 9, we will evaluate the results–if it goes smoothly, we’ll repeat the offer.

We know that hundreds of you already have our shirts. But who wore it best? Share your best Scan, Treat, Repeat tshirt pictures on MBCN’s Facebook page or email them to us at mbcntshirts@gmail.com.

 

Rebecca DelGaldo and her Integrated Project Management colleagues rocked MBCN's shirt last Oct. 13 in Chicago.

Rebecca DelGaldo and her Integrated Project Management colleagues rocked MBCN’s shirt last Oct. 13 in Chicago.

 


MBCN Supports Metastatic Breast Cancer Researchers With Total Of $100,000 In Awards

April 14, 2015

Editor’s Note: Here’s our press release announcing MBCN’s 2015 research grants.  Two weeks ago, en route to participate in an FDA public meeting, three members of MBCN’s board had the opportunity to meet with Dr. Ewald and his team at Johns Hopkins. We’ll share our impressions of that visit in our next installment. Stay tuned!

Patient Advocate Group Selects Johns Hopkins’ Dr. Andrew Ewald and Baylor’s Dr. Matthew Ellis as 2015 recipients of its Metastatic Breast Cancer Research Leadership Awards

 

 April 10, 2015NEW YORKThe Metastatic Breast Cancer Network (MBCN) announced the 2015 recipients of its Metastatic Breast Cancer Research Leadership Awards: Dr. Andrew Ewald, associate professor in the Departments of Cell Biology and Oncology at the Johns Hopkins University School of Medicine and Dr. Matthew Ellis, the director of the Lester and Sue Smith Breast Center at Baylor College of Medicine.

The Metastatic Breast Cancer Network (MBCN), an all-volunteer, patient-led organization, has long advocated for more focused metastatic breast cancer research that improves outcomes in the clinic for patients with metastatic breast cancer, an incurable disease that ends the lives of 108 people every day of the year.

“In 2014, MBCN made a commitment that all memorial contributions made to MBCN would go to funding metastatic research,” said Shirley Mertz, President. “We are pleased to present leadership awards of $50,000 each to two individuals whose work contributes significantly to understanding basic knowledge about the process of metastasis and to improving how patients are treated.”

Mertz, living with metastatic breast cancer since 2003, noted that although metastatic breast cancer is responsible for virtually every breast cancer death, it receives only a tiny percentage of the billions dedicated to breast cancer research. “MBCN is a founding member of The Metastatic Breast Cancer Alliance,” Mertz said. “The Alliance’s Metastatic Breast Cancer Landscape Analysis released in October 2014 found that metastatic focused research made up only 7% of the $15 billion invested in breast cancer research from 2000 to 2013 by the major governmental and nonprofit funders from North America and the United Kingdom. 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. We know research holds the key to changing those statistics—we are proud to support the work of Drs. Ewald and Ellis.”

Improving Knowledge About Metastasis: Dr. Andrew Ewald, Assistant Professor in the Departments of Cell Biology and Oncology at the Johns Hopkins University School of Medicine

Dr. Ewald is an interdisciplinary cell and cancer biologist. His laboratory, made up of basic science and medical trainees working in collaboration with engineers and clinicians, pioneered the development and use of 3D culture techniques to capture and analyze in real-time the growth and invasion of breast cancer tumor cells. This work is providing deeper insights into the biology of metastasis. Dr. Ewald’s work is complex, and yet he is able to explain his work in a way that patients can understand, as this video demonstrates (https://www.youtube.com/watch?v=gezIo3p2dl8).

AndrewEwald

Watch Dr. Ewald’s amazingly easy-to-understand explanation of metastasis and his work.

“Breast cancer patients of all stages are shocked to learn that after 30 years of breast cancer research, scientists cannot fully explain how and why breast cancer cells leave the breast and travel to distant organs, particularly many years after successful treatment for early stage disease,” said Mertz. “Unfortunately, this happens to about 30% percent of early-stage patients—and we don’t know why. How can we optimally treat the disease if we do not understand the processes that caused its spread?”Dr. Ewald believes research that seeks to understand and describe how cancer cells learn to make connections to other nearby cells, travel through local tissues and the blood stream, and then establish themselves as a new tumor in the bone, lung, liver or brain will lead to new strategies and treatments to control or eliminate cancer cells from accomplishing these steps to metastatic spread and ultimately improve outcomes for individuals with metastatic breast cancer.“We applaud Dr. Ewald on his important and challenging work in cell and cancer biology,” Mertz said. “MBCN and its members will continue to follow future developments in his research.”
Improving Treatments For Metastatic Patients: Dr. Matthew Ellis, Director of the Lester and Sue Smith Breast Center at Baylor College of Medicine
Dr. Matthew Ellis is both an oncologist and scientist who has championed the cause of metastatic breast cancer patients for well over a decade. Currently, Dr. Ellis is the director of the Lester and Sue Smith Breast Center at Baylor College of Medicine. He was recruited from Washington University School of Medicine in St. Louis where from 2010 to 2014 he was a professor of medicine and head of the section of breast oncology. He had also served as a faculty member there since 2003.While at Washington University Dr. Ellis gathered a large resource of patient derived xenografts (tumors taken directly from the patient and studied in animals) and these became excellent resources for testing new therapies and understanding treatment resistance.

His work to develop these models focused on estrogen receptor positive breast cancer and these patient derived xenografts will now complement similar efforts underway by Baylor Smith Breast Center researchers with estrogen receptor negative breast cancer.

Dr. Ellis, a pioneer in breast cancer genomics, has been instrumental in developing a Genome Atlas and Therapeutic Road Map for estrogen receptor positive breast cancer. Most recently he has found that metastatic breast tumors initially positive for the estrogen receptor frequently harbor mutations and translocations in the receptor that render the tumor resistant to endocrine therapies used to block estrogen. Several laboratories are now trying to develop new drugs that will block these mutant receptors.

“MBCN acknowledges Dr. Ellis’s leadership in identifying groundbreaking new information about mutations in breast cancer and their clinical relevance. His work in this area has the potential to bring precision medicine to metastatic breast cancer patients and, hopefully, with it, longer survival. (Hear Dr. Ellis discuss his work here (https://www.youtube.com/watch?v=aCCPhAHbgpI).)

Having decoded breast cancer genomes we must now annotate this massive amount of data, says Dr. Ellis.

Having decoded breast cancer genomes we must now annotate this massive amount of data, says Dr. Ellis.

“The Metastatic Breast Cancer Network acknowledges and thanks the individuals, organizations and private companies whose donations to MBCN on behalf of or in memory of loved ones and friends with metastatic breast cancer made these research leadership awards possible,” Mertz said. “We are confident the awards will advance the work of Dr. Ewald and Dr. Ellis.”

 

ABOUT THE METASTATIC BREAST CANCER NETWORK

The Metastatic Breast Cancer Network, a national, not-for-profit organization, was founded in 2004 to raise awareness about the kind of breast cancer that is rarely discussed in the breast cancer support groups or the media—metastatic breast cancer. Unlike early stage breast cancer, in which cancer cells are confined to the breast, in metastatic breast cancer, cancer cells have traveled from the breast to other sites in the body. Patients with metastatic disease are in constant treatment and must deal with the harsh reality that their disease is chronic, progressive and ultimately fatal. Led by patient advocates, MBCN has worked to offer education and information to patients and their caregivers through its website (mbcn.org); targeted brochures developed for the public and those newly diagnosed; and an annual conference for metastatic patients at major comprehensive cancer centers.


philadelphia story

April 13, 2015

MBCNbuzz:

A new chapter in Metastatic Breast Cancer history. Share with your oncologist and everyone you know. Thank you, Jennie! We are with you all the way.

Originally posted on putting the grrrrr in Grimes:

act

The terrors of the early AIDS epidemic. The unknowing. The limited treatments. Inadequate funding. Living within a limited timeline. Dying before your time. All while watching your friends around you die, from the very disease that you fight. With over 40,000 deaths a year during the height of the AIDS epidemic, these numbers startled the country. Shook us to our core and demanded that we all do more.

Eerily, the same thing is still happening today. At the same rate, with over 40,000 women dying of metastatic breast cancer (stage IV) each year—averaging 108 deaths a day. Again, 108 women, just like me are dying every. single. day.

I was again  reminded of this disheartening statistic by researchers as I attended Living Beyond Breast Cancer (LBBC)’s yearly Metastatic Breast Cancer Conference in Philadelphia this past weekend.  An event that took every bit of my strength, as it is tough to do…

View original 1,564 more words


Dear Sherri: Why Does My Oncologist Always Ask Me How I Am Feeling? Shouldn’t He Know?!

March 30, 2015
Sherri blogs at www.sherrifillipo.com

Sherri blogs at sherrifillipo.com

We had some additional question for Sherri Fillipo.  Sherri is a former nurse who has been living with metastatic breast cancer since 2012. Sherri spent more than 25 years as a nurse–first in the operating room and then as a patient safety and process improvement specialist. Sherri previously contributed “Improving Your Cancer Experience” and “Both Sides Now: What Happens When a Nurse Becomes a Patient.

–Katherine O’Brien, Secretary, MBCN

 

One oncologist says he always asks patients “How are you feeling?” and many respond “Well, Doc, you tell me.” He says he really wants to know….because tests only tell him so much–he needs to hear from the patient. Still, I hate to complain. Any advice?

If a physician asks, tell him/her. Yes, your chart has been reviewed and your vitals have been noted but he/she wants to hear from you how you are feeling. Objective data tell a care provider only so much. What you often start out with is what is on your mind. Your nurse or your physician can then delve deeper and get to the heart of the matter. Paper and computers don’t give the full picture.

On several occasions my oncologist has referred me to other doctors at the same institution. For example, after a thyroid nodule was seen on scans, I was sent to a specialist. All of these specialists start out with “Why are you here?” What’s up with that?

As odd as it sounds, sometimes physicians and nurses will ask a seemingly obvious question to a patient to ascertain the level of understanding the patient has for the topic at hand. Over the years I have learned a huge amount by asking and then listening to a patient’s response.

I remember years ago while preparing a patient for surgery, he had been asked about his NPO status (nothing by mouth after midnight) which is a crucial question to have answered prior to anesthesia induction. We don’t want any patient with a full stomach coming to surgery and then being sick. It can lead to all kinds of trouble. Anesthesia asked this gentleman if he had eaten or had anything to drink since midnight and his answer was no. A colleague of mine who worked in the pre-op area asked later and indeed the answer was no. As I was going through my list of questions, I asked a third time. This was his response, “Well, I had a biscuit and a cup of coffee because I knew it was going to be a long day.” Case cancelled!

I have decided to get a second opinion but I feel like I am insulting my doctor. Help!

If you don’t feel comfortable with the information you have been given for any reason, you have every right to seek a second opinion. Physicians are used to patients doing that. The only potential challenge might be if you had two very divergent care plans. Then you would have to decide what to do.

This is a good time to remind people about the patient bill of rights–typically a framed document you might have seen posted at entrance points in your hospital or infusion center like Admitting or Registration.  Below is a sample of the one at the hospital where I work per diem. It is actually much longer but gives you an idea of what it looks like.  Note the last item I listed:

  • You have the right to respectful care given by competent personnel and also, reasonable access to care in a manner that is timely and that minimizes discomfort.
  • You have the right to expect emergency procedures to be implemented without unnecessary delay.
  • You have the right to considerate and respectful care with consideration of your psychosocial, spiritual, and cultural values that may influence our perceptions of illness and care. You have the right to good quality care and high professional standards that are continually maintained and reviewed.
  • You have the right to request care as long as care is deemed medically necessary, and to participate in the development and implementation of your plan of care.
  • You have the right to be well informed in layman’s terms about your illness, possible treatments and likely outcomes including unexpected outcomes, and to discuss this information with your doctor so that you may make an informed decision.
  • You have the right to know the names and roles of people treating you.
  • You have the right to consent or refuse medical care or treatment, as permitted by law, and to be informed of the medical consequences of such refusal.  If you refuse a recommended treatment, you will receive other needpatient-bill-of-rightsed and available care. You have the right, except for emergencies, for the physician to obtain necessary informed consent prior to the start of any procedure or treatment or both.
  • You have the right to assistance in obtaining consultation with another physician at your request and expense.

 

Should I provide a new physician with a quick oral history?

If the physician sits down and gives you a quick oral history of your condition, you can bet he has reviewed information that was provided to him/her by your attending physician. He may ask you to give a summary to compare with what he already knows. If you find that you need or want to provide one, again I am a big believer in carrying that small notebook with you so you can have your thoughts arranged logically. In preparing for your appointment, you might use this template:

  1. Diagnosis
  2. Date of diagnosis
  3. Current meds
  4. Surgeries? What done? When?
  5. Reason for your visit today
  6. What you hope to gain by seeing this specialist
  7. Anything pertinent to the visit

Surgery is not standard of care for metastatic breast cancer, but my doctor thought it was worth considering. He sent me to a surgeon–the surgeon was arrogant and basically stressed my Stage IV status. What a waste! Couldn’t my doctor have spoken with the surgeon prior to my appointment?

Yes, they should have had a conversation prior to your visit. When a physician wants a patient to see another physician, this is called making a consult. It can be done via the computer or through a phone call. A brief outline of the need for the consult and the expected outcome of the meeting should be noted and understood by all.

Now to the surgeon part. I am sorry for the arrogance displayed by the surgeon. And in by no means am I defending him/her. (Remember I spent many years in the surgical arena. I have seen and heard it all.) If the surgeon was an oncological surgeon, I would expect a completely different response than if he/she was not.

Although respect should be the foundation of all patient-physician relationships, I wonder if this surgeon was out of his/her comfort zone and was at a loss for what to do or say. It doesn’t make it right but it makes me wonder. Remember from the last Q&A I did, if you want the complaint to be dealt with, use your resources in the hospital such as the Patient Advocate or the manager of the department. Let him or her know your experience with this surgeon. Trust me. Hospitals want to provide compassionate care and if you feel you did not receive it during this surgical consult, administration wants to know.

 

 Do you have a question? A suggestion for a future Q&A? Please comment below.

 


Saying Goodbye to Lisa Bonchek Adams

March 15, 2015
Lisa's blog will remain at http://lisabadams.com/

Lisa’s blog will remain at http://lisabadams.com/

Lisa Bonchek Adams  died on March 6, 2015 at age 45 from metastatic breast cancer. Our condolences to Lisa’s family and friends.

Many people first learned of Lisa after she was the subject of stories from Guardian columnist Emma Keller and her husband, former New York Times executive editor Bill Keller in January 2014. The Guardian subsequently removed Emma Keller’s article; MBCN wrote a rebuttal to   Bill Keller’s article shortly after it appeared.

“Bill Keller’s op-ed piece on “Heroic Measures”  (January 12, 2014)  contains egregious factual errors,” we wrote in January 2014.  “It also misrepresents what metastatic breast cancer is and how it is treated.”

We hope that Lisa’s writing will be her legacy. Emma and Bill Keller both questioned Lisa’s motives. Why would would someone share so many intimate details of a devastating illness? Only Lisa could adequately address that issue–but in very general terms, writing about metastatic breast cancer probably provided a small measure of control over a disease where one’s future is mired in uncertainty. As the New York Times put it, people with metastatic breast cancer “live from scan to scan, in three-month gulps, grappling with pain, fatigue, depression, crippling medical costs and debilitating side effects of treatment, hoping the current therapy will keep the disease at bay until the next breakthrough drug comes along.”

We are reminded of Antaeus–the mythological figure whose strength remained intact as along as his feet were still touching the ground.  As long as Lisa could tweet, she remained grounded–strongly connected to her real-life family as well her online tribe.

One reason that Emma Keller was presumably drawn to Lisa’s online output was their shared history. Both Emma and Lisa were diagnosed with early stage breast cancer. Both had mastectomies followed by reconstruction. Both women were originally thought to have DCIS; Adams subsequently learned she had more extensive involvement.

Lisa was diagnosed with Stage 2 breast cancer in 2007 at 37 when her youngest child was 7 months old. In 2012, she learned the cancer had returned and was now metastatic, having spread to her bones.

From the Guardian article, it seemed Emma Keller might have wondered if Lisa’s experience would inform her own at some time in the future. We hope not–but of course we don’t know. We stress that every individual is a statistic of one. We can’t assume anyone’s cancer experience will the blueprint for our own.  Everyone is unique.

Most people with early stage breast cancer will NOT go on to have a metastatic recurrence. Unfortunately, about 30 percent will. Some people erroneously assume people with metastatic breast cancer must have done something wrong–and that’s why their cancer came back. But that is simply not true.

There are currently an estimated 155,000 people living with Stage IV breast cancer in the U.S. Most–about 90 percent–were previously treated for early stage breast cancer. Only about 10 percent were metastatic from their first diagnosis. Why did these patients’ early stage breast cancer cancer come back? How can we prevent this from happening? Those are answers we don’t have today.

Most breast cancer isn’t hereditary–it just happens. Lisa did have a family history of breast cancer–her own mother was diagnosed at age 36 and survives her. The median age for breast cancer in the U.S. is 61–a diagnosis before age 40 is thought to be more indicative of a hereditary cancer–but again, those are answers we don’t have today. Lisa shared that testing showed she (Lisa) wasn’t a carrier of the BRCA1 or BRCA2 mutations. Again, there is still so much we don’t know.

Lisa’s story illustrates the inherent cruelty of this disease. Lisa was a model patient–and an active and informed participant in her own care. She uncomplainingly endured harsh treatments as both an early and advanced stage cancer patient.  From 2012 to the first few months of 2015, she tried at least different six courses of treatment—when one failed, she moved on to the next, just as all of the 155,000 US people currently living with metastatic breast cancer routinely do. Eventually the scan, treat, repeat cycle ended—and Lisa became one of the 40,000 U.S. people to die from breast cancer this year.

Lisa’s story also puts the spotlight on a demographic often overlooked when we talk about breast cancer: young moms. Breast cancer is certainly more prevalent in older women–but it can and does happen to young people. According to American Cancer Society figures 232,340 U.S.  women are diagnosed with invasive breast cancer annually. Of those, about 27,000 are women 45 and under, or about 12 percent, and approximately half of those women are postpartum, defined as being within five years of having given birth.

We didn’t know Lisa personally. We admired her outspokenness and willingness to share the details of her life. Lisa may well be remembered for using social media to communicate the details of her life as a cancer patient,  but she was much more than a person with metastatic breast cancer. She was a daughter, a sister, a wife, a mother and a dog lover, particularly of Corgis. Although she was often serious in recounting the details of her illness, she had a quick wit and a great gift for writing.

In 2011, she recalled that her youngest son initially didn’t call her “Mommy” or “Mama.” Instead, he called her by the term of endearment she often use for him: Cutie. “Where’s Cutie?” he used to say.

Godspeed, Cutie.

Thank you for being you.

 


Improving Your Cancer Patient Experience: Sherri’s Inside Scoop

March 14, 2015

Sherri Fillipo has a unique perspective–she’s a former nurse who has been living with metastatic breast cancer since 2012. Sherri spent more than 25 years as a nurse–first in the operating room and then as a patient safety and process improvement specialist. You can read Part One of Sherri’s story here. In Part Two, she offers some practical tips for patients. –Katherine O’Brien, Secretary, MBCN

 

When were you diagnosed with metastatic disease?

My primary diagnosis was in 2010, five days before my 50th birthday. We were scheduled to take the big 5-0 trip to San Francisco, one of my most favorite cities twelve hours after receiving the diagnosis. We made the trip, although a blur. It rocked me. I had bilateral invasive ductal carcinoma. They stopped counting at five tumors…I am ER+PR+ Her2+ – had bilateral mastectomies and completed my chemo regimen. Later I had reconstruction.

I begged my husband to get me out of the town/state we were living in. Remember I had just moved there and then received my diagnosis? We moved to upstate New York but forgot to leave the cancer in Virginia. Six months after our NY arrival, I was diagnosed with mets to the liver, fall 2012. I made it 22 months off chemo before the spread. Chemo again. Clear until fall 2014. On chemo currently. I am on an odd two-year cycle.

 

What do you want people to know?

I want the world to know if the cancer doesn’t leave the breast, you don’t die of breast cancer.

AND if it didn’t leave the breast, you did not “survive” breast cancer because you were never in imminent danger of dying. (This is what my mother calls my edgy self!)
Unfortunately, while 70 to 80 percent of those treated for early stage breast cancer won’t have  a metastatic recurrence, 20 to 30 percent will–and we don’t know who will have a metastatic recurrence. That’s something many people either don’t know or prefer to avoid thinking about.

I love Dr. Susan Love’s quote: “You can be assured if the NFL is wearing pink, our nation is breast cancer aware!” Meaning, let’s move on beyond basic awareness to concrete action, people.

 

Does being a nurse help or hinder?

Being a nurse both helps and hinders. I have spent my adult life inside hospitals. I understand the strange world of healthcare. I try to be gentle when I am a patient because I will tell you nurses and physicians secretly hate caring for their own. They feel like they are being watched (they are) but like I wrote above, we don’t always speak up. Last week I was at an unfamiliar place for chemo and I knew that there was a protocol that required a 30 minute wait post-therapy. When I broached the topic with my nurse, she told me she had never heard of such a thing and didn’t believe it was true. Ah, there I was in a dilemma. She did not know I was a nurse. I knew what I was talking about but in the end I did not speak up. (I also had a colleague with me who would address that later with the department.)

My frustration not being able to work keeps me blogging and keeps me at the computer researching and reading. I also review articles for the national organization Association of periOperative Registered Nurses (AORN).

My friends and family think I can be too forthcoming, too objective but I cannot help it. I am a nurse. I have a terminal illness. Not enough is being done and I am going to talk and write about it. So, in that sense being a nurse helps put some weight (?) behind some of what I write about.

 

Infusion Centers: How do they work?

I am not going to pretend to understand everyone’s infusion center process. That would be a full-time job! But there are things that can speed up or slow down processes:

  • Having blood work as soon as you arrive – this allows the blood to be processed while you are having vitals taken and beginning to talk to your physician; bloodwork will be run stat which is hospital lingo for being completed within 60 minutes. I have heard of facilities which require you come in on a different day than treatment. That doesn’t sound patient-centered to me and it could cause delays on treatment day if they can’t find your labs or if you need to have them redrawn.
  • I encourage patients to bring in written down questions. This makes the time spent with their physician much more efficient. I carry a small notebook around with me everywhere I go (read: chemo brain) so I have them ready to go when we are together.
  • If you need refill prescriptions, take a look before you leave from home. Write them down in your book. This way when asked, you won’t have to think back on what you may or may not need refilled. While this seems like it is only impacting you, if you think of a physician’s day being a series of dominoes, keeping it efficient for yourself, keeps it efficient for others. Meaning an extra five minutes with you while you sort your meds out in your head added to the next person’s extra five minutes, leaves you if the afternoon patient potentially being seen later than you want.
  • Also, if you forget a symptom or a prescription and end up calling back in to the office, remember that offices have different policies. Some will try and snag the doctor between visits and will call your drug in, while other offices will wait until the end of the day and make potentially dozens of calls to pharmacies. If your office does the snag and grab approach, your call has halted the progress of the flow of the center – not for long but when you add up multiple stops in a day, the flow is going to get backed up. *Note: don’t misinterpret, they all want to help. Don’t let this stop you from calling if you need to.

 

Nurses and Techs: Do they understand MBC?

This is my personal opinion and mine alone. Yes, I think the nurses ‘get’ it but if you were to ask my nurses over the past two years if I have pushed them to talk about death and dying, they would shriek, “Yes! A thousand times!” The truth is they don’t want to talk about it. Even though they are oncology nurses. And if pressed, they will admit it. They also didn’t like when I stopped the Perjeta I was taking. In fact my nurse was livid with me. Not kidding. Then the next time we were together she told me I had rocked her boat. That she had never had a patient tell her oncologist that she was stopping something when they weren’t at end of care. I simply didn’t want diarrhea 24hours a day, seven days a week. She told me she learned so much by having to look at someone else’s perspective. They will tell you, I push them – because I can!  Make sure you clearly communicate your quality of life. If you feel as though your concerns or issues are being dismissed, it might be time to consider making a change in treatment providers.

The techs? No, I don’t think they fully understand the nuances of the disease. I wish they did but  in general, you have to think of them as bright but task driven employees. So, while they know the basics of some diseases, I would not expect them to talk at much depth about them.

 

Who do you talk to if you have a complaint?

It depends on the type of complaint. As a good nurse, I always knew I needed to go up my chain of command and for the most part, that would be a good thing to do – at least at first. If I had a complaint about an employee in my infusion department, I would ask to speak to the manager or director of the department. If you are so inclined, you could speak face-to-face at that time or ask for her business card to call her later.

If it is a complaint that is broader or one that you just don’t feel comfortable talking with unit leadership about, you have several options:

  • Inquire if your hospital has a Patient Advocate – these people spend their lives talking to patients and family members about a myriad of things.
  • Nurse Navigator- Some hospitals have Breast Cancer Navigators who do a wide variety of things for the patient, from assisting with making appointments, to working with financial departments on the patients’ behalf to listening to any issues the patient might have regarding her care.
  • My department also has a social worker, dedicated to oncology. This would be a resource.
  • You can ask to talk to the Director of Patient Safety – this person is always on the lookout to enhance not only safety but the patient experience.
  • You can ask to talk to a member of the Risk Management Department – in some hospitals Patient Advocacy is a part of this department.

 

How do you have a good relationship with your medical team?

I don’t think I have ever been asked this before! Well, you should never have to worry if your nurse or doctor is having a good day or not. They are there to provide care. But the human side of me (the nurse in me?) always tries to interact with each member. I know all too well the behind-the-scenes goings on and I do try to make my time with them pleasant. Sometimes I will say, “Boy, you must be tired. This place is really hopping today.” Or something like that. It humanizes us all.

I think points I made up above would be appreciated by the staff: have your thoughts together, know if you need refills, have your questions/concerns in your head and thank them for taking care of you.

Really, staff love to hear they are doing a good job. If you can, a nice note is always appreciated. (They get photocopied and placed in personnel files and can do wonders at evaluation time!) No need for gifts. Staff can’t accept them anyway but positive words to supervisors, managers etc. go a long way. But only say it if you mean it! If there are problems, see the list above for resolution!


Both Sides Now: What Happens When a Nurse Becomes a Patient?

March 11, 2015

“Once a nurse, now a patient” is how Sherri Fillipo describes herself on her blog.  Sherri was first diagnosed with breast cancer in 2010 just prior to her 50th birthday; her metastatic diagnosis followed in 2012 when she learned her cancer had spread to her liver. This past February, we spoke to Sherri about her guest post (“The Conversation“). We found her observations on end-of-life issues as well as her own recent treatment decisions very compelling. We asked Sherri to tell us more about life on both sides of the bed rail–and as you’ll see, she had some excellent insights! In Part One, Sherri reflects on knowing too much as a nurse and yet feeling overwhelmingly vulnerable as a patient; in Part Two she offers some practical tips for patients.–Katherine O’Brien, Secretary, MBCN

 

I was born and raised in North Carolina about four hours from the coast. Summers were spent at the beach which is why I still love it to this day – everything related to water, swimming, eating all kinds of seafood, collecting seaglass, walking the beaches. My hope was to have retired to the outer banks of NC. Now I just spend as much time there as I can, while I can.

I am married to a great man and between us we have four grown children, two working, two finishing college this year! They have all been marvelous as the disease has gotten more serious. The kids often come to upstate New York where we now live and we always have a great time. We live near the Finger Lakes so wine tasting is almost always on the docket.

I will turn 55 late this summer and will probably spend it at the beach. Though not working now, for 25 plus years, I was a nurse. At the beginning of my career, I worked in the Operating Room and then eventually broadened my specialty to patient safety and process improvement. An ironic twist when I turned from nurse to patient, I wrote an article for the National Patient Safety Foundation (NPSF) the working title was Lying in the Bed Instead of Standing Beside It. At the time NPSF had a column reserved for the “Voice of the Patient” to allow those of us who were receiving care to write about our experiences to better teach caregivers what we, as patients, were really thinking. Below is an excerpt from that article highlighting some of the ways that I was impacted:

Mere months after my husband I relocated, I was diagnosed with invasive bilateral breast cancer. I received the diagnosis over the phone while the television cable repairman was working in the next room, boxes still stacked to the ceiling from our move. I was living in a state where I knew absolutely no one, and I was going to have to begin receiving health care in a hospital where I had no connections, did not know whom to ask for—nor whom to avoid—a lot like every other patient in the world. And I was afraid. Suddenly the patient safety officer was in the bed instead of standing beside it. I suddenly felt vulnerable. I had no appreciation of how long this feeling would walk with me over the next two years. All I knew at the time was that I wanted to go outside and scream, “Hey! I am not yet 50. And what do you mean cancer in both breasts? Isn’t cancer in one enough? I just had a mammogram a year ago. I get one every year. I am the ‘good girl’ who crosses all the t’s and dots all of her i’s. I just left a hospital that opened up a new cancer tower and now I find out I have cancer?”

 

The week I was diagnosed, I went to the hospital for my first exam and for the scheduling of an MRI. My nurse navigator greeted me and my husband by saying, “You must stop by the wig boutique when you leave. It is the most marvelous place with all sorts of choices.” I had not yet decided if I was having a lumpectomy or a mastectomy. How did she know I would be bald soon? I don’t think I even knew her name at that point. I was so rattled by that comment I remember little else of the conversation and was glad that my husband was there to hear it on my behalf. Later I thought about all those patients who come alone and are smacked by something we as health care professionals say that has a completely different impact on the patient than we ever intended.

 

A week later, I had not heard back about the results of the MRI. I called the nurse navigator, who said she would contact the physician. Four calls and two weeks later, the surgeon finally called me back and told me he had just reviewed the MRI with the radiologist. This is first thing he said to me: “Your MRI is a nightmare.” I was sitting on the couch alone in my new home and that word continued to reverberate in my head. Luckily I had a pen and paper, and as he talked I scribbled every word he said, hoping my physician-husband would translate for me.

 

Over the next year, after three surgeries and four rounds of chemotherapy, my perspective on patients and what is said and done to them took on a whole new meaning. I had to tell my nurse, new to the profession, how to catheterize me. Later, I had to ask a more experienced nurse to don sterile gloves after she contaminated her first pair in front of me. To be clear, I received exceptional care. I relay these stories now more aware than ever of how similar events are occurring all across the nation. I now know what it is like to wait fitfully, tearfully for pain medication—to press the call button and wonder if and when it will be answered. (It was always answered, but that fact did not lessen my anxiety each time I used it.)

 

The truth is, patients may feel pervasively vulnerable lying in a bed. I had been told to expect a postoperative dressing change to occur in the office. This was the one thing that I dreaded the most. While wrapped tightly with bandages and with the tissue expanders in place, I could pretend that I was pretty normal looking. But I knew when the dressing came off, my ability to pretend would be over. I was shocked and unprepared when the plastic surgeon flew in while I was still an inpatient, walked up to the bed and began tearing the dressing off my chest (no hand hygiene by the way). Since this was not the plan I had been told, I didn’t understand what was happening. I said, “You’re not taking off my dressing, are you?” Yes, he answered he was. I lay there in disbelief. I said nothing for fear of what I might say or in fear of what he might do. He said to me, “You don’t seem very pleased with the outcome. This is fantastic work!”

 

Later that day, one of the nurses came back and told me that indeed my lack of enthusiasm had him talking about me at the nurses’ station, wondering aloud why I wasn’t more pleased with the results. He was a great surgeon in every way, and today, two years later, I could give him the praise he wanted, but not then. Are we as health care givers in tune, perceptive, able to merge a task with the human component of compassion?

 

I think we need to speak for patients instead of asking them to speak up. While I agree that patients should be active participants in their care, I didn’t have the voice (or the courage, energy, or fortitude) to ask my surgeon to postpone the task, or call a nurse in to be with me while he changed the dressing. Ultimately, the nurse manager reminded the plastic surgeon that I had lost both breasts within the last 48 hours. To expect someone to be happy under those circumstances was asking a bit too much. She spoke for me because I couldn’t speak up.

 

Many months later, after my chemo treatment, when I had just gotten brave enough to face the world without my hated wig, I went to the hospital to have lab work drawn. While standing in line, I heard a phlebotomist say, “Hey there, Buckwheat.” I turned to see who was standing behind me but saw no one. I realized she was talking about me–and I nearly died of embarrassment right there. I had begun feeling a bit like my old self, and this woman, for reasons I still do not understand, thought she was being funny. I left the lab without having my blood drawn that day. Instead the hospital’s patient advocate found me (thanks to my husband, who worked there). After telling her my story, she advocated on my behalf with the laboratory department. She spoke up for me when I was too embarrassed to speak up for myself.

Portions of this article originally appeared in “Speaking for the Patient” in the P.S. Blog, published by the National Patient Safety Foundation; used by permission of  Patient Safety Insight. All rights reserved.

Coming Next: Sherri’s Inside Scoop on Improving Your Patient Experience


Follow

Get every new post delivered to your Inbox.

Join 1,841 other followers