Barbara: Learning How to Accept and Live with the Unacceptable

June 24, 2015

In 2002, Barbara Bigelow was diagnosed with Stage II breast cancer. She was 44 years old and had a strong family history: Her two older sisters also had been diagnosed with breast cancer.

Barbara spent 2002 in treatment: She had a lumpectomy, sentinel node biopsy, ancillary node dissection, chemotherapy with AC for 6 rounds and 7 weeks of radiation. Shortly after Barb finished treatment, her sister Mary died–just  six weeks after Mary’s metastatic breast cancer recurrence was discovered.

Barbara’s cancer diagnosis coupled with Mary’s Stage IV experience prompted Barbara to take an aggressive approach to her treatment.  She  had her ovaries and fallopian tubes removed as well as a bilateral mastectomy with DIEP reconstruction. The latter  was major surgery–a 16-hour procedure to remove both breasts and transplant abdominal fat to create new breasts. Revision surgery to create “nipples”  followed three months later as did  yet another surgery and tattooing. 

Barbara then took an aromatease inhibitor (AI) for 10 years as her doctor recommended. She had been off the AI for two years when she learned her cancer had returned.  Here’s Barbara’s story in her own words.

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Barbara Bigelow learned she had metastatic breast cancer in March 2015.

I have been married to the love of my life, Tim, for almost 32 years and we have two beautiful daughters, Kelsey (25) and Bridget (24). We live in the Boston area.

I must admit that when I hit the ten-year post-diagnosis mark, I felt  distanced and more detached from the breast cancer community–I sort of put it behind me although the threat was always there, lurking in my head. It never completely goes away and my doctor never told me I was cured.

I woke up March 11, 2015 in a pile of rubble. This time my treatment team had shrunk to my elderly oncologist and his NP. Gone is the cavalry, leaving me standing alone as a treatment failure. I feel like I have somehow pissed my doc off for not staying in remission. This is compounded by the very real and very sad realization that women with recurrence like me are not a priority. We are no longer curable, people whose  pink ribbon flying days are behind them. Too dark? Yup, I get it.

Given my family history, some people have wondered if I am a carrier for the BRCA-1 or BRCA-2 mutations. I’m not–and neither are my sisters.

Others are curious how can I have breast cancer even though I no longer have “real” breasts. Good question!

Cancer is an unforgiving master that can travel, hide and mutate as it finds somewhere else in the body to take up shop–in the same spot as before, in the tissue next to the original spot, or in my case, a distant location.  BC commonly metastasizes to the bone, liver, lung and/or brain.

I must be special–my cancer  decided to pitch its tent under my right kidney, marshal and enlarge the troops until it was ready to take the hill in the form of a tumor.  I have a 3 cm solid mass in the retroperitoneum obstructing the right kidney which is now non-functioning—there is no hope of any appreciable recovery of renal functioning in that kidney. My left kidney is doing all the work.

My metastatic breast cancer diagnosis came as quite a surprise…it followed an MRI for back pain due to my spinal stenosis. If I hadn’t had that MRI, I would never have learned about the mets.

My pathology report confirmed this isn’t a new primary cancer–this is the same breast cancer subtype I had with my first diagnosis. When cancer spreads beyond the breast it is treatable but no longer curable.  I am not going to win this fight, but hopefully I will respond to treatment and win a few battles and skirmishes. I will try different treatments until the cancer figures out how to outsmart it and becomes resistant–then it’s on to another treatment–hopefully my cancer can be controlled for some good long stretches.

This time, I am blogging my experiences.  Why am I doing this? Thirteen years ago, blogging was not yet a thing and we had to e-mail interested people and it was hard. Now I can blog and create a permanent record for my kids. At this point it is easier for me to write my thoughts than it is to read a book–my concentration is shot and blogging helps me process and organize my thoughts.

As for my family– People ask me how they are doing—don’t ask me, ask them, I can’t presume to speak for them and no one really wants to hear what two sisters whisper to each other when they climb into bed together to watch TV or my husband’s anguish at a 3:00 AM panic attack. Yeah, there is that–I am composed on the outside by nature and profession but on the inside I am as dazed, confused and panicked as the next person. Anxiety has lived in me for 13 years and isn’t leaving any time soon.

I have been in denial about my cancer re-occurrence. I have buried my head in the sand, looked for every distraction and pretended it was an epic joke that the universe was playing out.

How could this really be happening to me? I can talk about it, discuss it in-depth even, but I really haven’t slowed down enough to actually feel it. It has been a lot easier to think about and question the quality of care I have been receiving from my grumpy elderly doctor than to look at myself. To get unstuck. To move forward. To feel.

The call  came at the right moment if there ever is a right moment in the cancer universe. Time for a second opinion and a new attitude. The woman on the other end of the receiver said,  “This is where you need to be, we don’t do anything but cancer and it’s a whole different ball game here.” I needed to hear that.  It’s been lonely here in the dark, not feeling like a medical team was on the case, looking out for me.

It’s hard– to transition away from the people and place that have taken care of me for so long and take the giant leap into the unknown. It just means a lot of anxiety all around even though I know intellectually this is right. It is, for me, life or death. I have to pick up my sticks, buckle in and launch into my future, whatever that is.

First we muddled our way through my former treatment center to pick up the CDs of all my scans, head to Dana Farber registration and sign many forms including my health proxy—good luck Tim, I wish you the best on that.

My new doctor is lovely. Soothing, reassuring and most of all, positive. She rubbed my back, touched my hand, listened hard, answered all our questions and for the first time, we both felt a sense of hopefulness and optimism. This is where I need to be.

She said she hoped for a long and winding road with me–of course there will be bumps but hopefully I won’t fall off a sharp corner. She wrote blood work orders, took me on as “hers”, promised to do her homework–getting my actual tissue samples from my prior oncologist. She spent a lot of time with us. It was good. Treatment stays the same for now–Pablocyclib and Letrozole. Blood counts headed south but not bad yet.

My new doctor has renewed my hope that there is a space between my present and my future–time to breathe, catch up, and get organized. Despite only 7% of money raised for breast cancer research being spent on MBC and no change in the MBC stats in 20 years, I still don’t think it’s over. For me.

I am only on my first treatment. And, now that I am well into my 3rd cycle of chemo, I feel pretty good. Actually I feel more like myself than I have since February. I’ll take it! I do not plan on going anywhere without a battle and I am determined to drag myself through the door to my future.

I will have a PET scan at the end of June. Will it be a big day? Yes, but I believe in my oncologist and the chemotherapy drugs and mostly, I believe in me.

Why is it so much harder this time? Last time around I was 13 years younger and did not yet have arthritis and spinal stenosis and menopause to get through. I had young kids that needed attention. My parents were still here and they were two more anchors to help me to get on with, and over it.

Even though I was told many times that my cancer was incurable I didn’t believe them. I felt good. I thought I beat the odds. I was going to be a bad ass Melissa Ethridge, guitar blazing, kicking its butt. Turns out not so much. So yes, I am still here trying to learn how to accept and live with the unacceptable.

However, I feel great today, the weather is perfect, and Tim is puttering around, fixing things, mumbling to himself, life is good. We are all blessed and the tender mercies are present and surround me everywhere.

Lastly, when Bridget first heard that cancer might be reappearing in our lives, her response: “Please, no more lasagna, mom, I can’t take it,” in reference to the universal food of love that so many kind and thoughtful people brought us the first time we went through this. This is what grounds me and keeps it real.

 

You can follow Barbara’s story at barbigwire.com.


Sandra’s Story: Living With Metastatic Breast Cancer for 17 Years

June 11, 2015
Editor’s Note: Sandra’s remarkable story started two decades ago. She was 42 when diagnosed with Stage 2,  triple-negative breast cancer. Three years later, when the cancer appeared in her bones, it had changed to ER+, HER2-. Later when she had a new tumor in same breast it changed to ER+ and HER2+. Whew! Today, Sandra is 62 years old and  a tireless advocate for people living with MBC.  We love her story and we think you will, too!
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Sandra with a kitty from the animal shelter she volunteers at every week.

I’ve been living with Stage 4 breast cancer since 1998.  It took an agonizing three months to confirm the diagnosis with a biopsy and I got the news the day before I hosted Thanksgiving Dinner at my home for 18 family members.  That Thanksgiving was like a Three Stooges movie.  I told my mom about my diagnosis when we were alone, then my middle sister came in and wanted to know what was going on, followed by my eldest sister.  When we opened the door to come out, the entire family just froze.  My niece spilled red wine on my newly installed cream carpet and I totally forgot to make mashed potatoes.

I was 42 years old when I was first diagnosed with breast cancer.  With my original diagnosis of triple-negative breast cancer, the pathology of my tumor mirrored that of my mother’s who was diagnosed 18 years prior.  She had surgery and radiation.  I decided to go for chemotherapy as well, fully expecting to have the same results as my mother.

Unfortunately, three years later at the age of 45, my cancer metastasized.

My son was away at college and didn’t come to our Thanksgiving Dinner that year.  My mother and I drove 1,000 miles north to see him so we could drop off his car.  When I told him about my diagnosis, he was mortified.  I was ready for that.  I said “It’s your job to graduate and it’s my job to get better.”  He graduated and I am still alive, riding the mets roller coaster for nearly two decades.

I continued to work the first 10 years after Stage 4 diagnosis and got involved in my local Y-Me chapter along with the 3-Day Breast Cancer walk.  I believe the exercise from training for the 3-Day walk helped me stay strong for the therapies ahead of me and may have even extended my life, as did the support of my parents, my husband and my other family members.

My daughter turned 13 the day of my original surgery.  One night, as I was tucking her into bed, she said “Mom, I know you have breast cancer and so did Granny.  I know that I’ll get it too, and I want you to know that I’m OK with that.”  Although a sweet sentiment on the surface, this motivated me to want to do something to stop the disease so that her generation wouldn’t have to worry about ever dying from it.

My interest in the science of breast cancer and advocacy brought me to many National Breast Cancer Coalition conferences and Project LEAD.  I have participated in nearly two dozen breast cancer research review panels, sitting right next to researchers, statisticians, clinicians and epidemiologists, giving them the message that Stage 4 needs more attention and funding.

I’ve been involved with the Y-Me Helpline and then became a peer counselor for After Breast Cancer Diagnosis and Living Beyond Breast Cancer.  When others ask me what treatments I’ve been on, it’s hard to remember them all.  Some of them aren’t being used any more, like high dose chemotherapy followed by stem cell rescue.  Luckily I haven’t exhausted all of my treatment options and I continue to try to stay as healthy as I can so my body is able to withstand what treatments may come my way.

You can read more stories like Sandra’s here.

Metastatic Breast Cancer Mom Is Making A Difference With This Viral Video

June 8, 2015

Holley Kitchen’s viral video tells her metastatic breast cancer story…and is educating millions of people around the world about Stage IV breast cancer. Since being posted on June 5, the video has gotten more than 10 million views and 400,000 shares. You can watch it on YouTube here.

Holley's metastatic breast cancer video has been seen by millions.

Holley’s metastatic breast cancer video has been seen by millions.

Holley lives in Cedar Park, Texas. She told her story to KVUE’s Terri Gruca. “Holley was diagnosed with stage 3 breast cancer at age 39,” Gruca told viewers. “After a double mastectomy, chemo and radiation she thought she was cancer free. A year later she found out it had spread to her spine and bones.”

“I think it resonates with people because it’s honest,” Holley told the reporter. ” It’s what people don’t want to say and what people don’t want to hear,” she said.

We love Holley’s sense of humor and how she personalized her story. She’s also self-deprecating–she stresses that she’s not trying to make people feel bad–her mission is education. Like so many of us, Holley didn’t know what metastatic breast cancer was or how people got it until her own diagnosis.

Holley’s video shows what one person can do. Holley did a great job of educating herself about metastatic breast cancer. She is obviously very familiar with “The 13 Facts Everyone Should Know About Metastatic Breast Cancer.” Thank you,  Holley,  for the shout out to MBCN.org at the very end of the video!

We also love Holley’s term for someone living with metastatic breast cancer: #lifer. You can find Holley’s group” Facebook page here.

 

….and now BuzzFeed has picked up Holley’s story: http://www.buzzfeed.com/juliegerstein/this-womans-breast-cancer-journey-will-leave-you-speechless


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).

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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.

 


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