Cancer: Our Opinion on Second Opinions

Posted on May 24, 2011 by Chris Ferkenhoff

This past weekend I received a call from a woman, whom I’ll name Norma, audibly unnerved by events that transpired after her 74-year-old father was diagnosed with Stage IV liver cancer. The seed of her despair was that her father’s doctors discharged him immediately after diagnosis to receive palliative care from hospice in his home. No alternatives were offered. Although a photo of her father leaving the hospital shows him smiling alongside her brother, within three days he was in a vegetative state, responding only to rationed drops of water squeezed from a sponge to his lips. Norma chokingly described him as a “fish gasping for life”.

Her father was on continuous morphine and denied nourishment and hydration of any substance, as the hospice nurse informed her his body “would reject water and food”. Norma told me her father was dying before her eyes and speculated that, perhaps, the starvation and/or morphine was killing him faster than the cancer. She was very doubtful of this being the right course of action. Again and again Norma mentioned that she wished they had obtained a second opinion from another qualified doctor.

Perhaps there is no more compelling reason for a cancer patient to get a second opinion than to eliminate the regret of having hastily followed the treatment plan presented by the original doctor. No patient wants to be in the fourth week of debilitating radiation and doubting the merits of their treatment plan. Such skepticism creates tremendous anxiety for a patient and is suffered by family and friends as well. A second opinion helps patients make treatment decisions with lasting confidence.

A second opinion is a review of the original pathology report, diagnosis and treatment plan by an independent, qualified physician. Its importance for cancer patients and their families cannot be overstated. The journal Cancer reported in 2005 that more than 12% of cancer patients in the U.S. are initially misdiagnosed.[1] Second opinions are a common and well-advised practice, especially in areas of healthcare that involve complex disease and multiple treatment options.

Cancer is highly complex. It is a single term that encompasses over one hundred distinct diseases, each with unique and constantly evolving treatment protocols. No doctor can be sufficiently informed in every moment of the latest and best treatment for every type of cancer. Therefore, initial treatment recommendations may not be grounded in complete and current data, making it paramount to get a second opinion from a specialist with the requisite experience and up-to-date knowledge of a patient’s particular cancer. This process will also help a patient decide if changing to a new treatment team should be a first step. Research shows that assertive patients get better health results.[2]

After diagnosis, unless medical urgency dictates, getting a second opinion enables cancer patients to slow the process down, properly digest life-changing information and take charge of their healthcare. It is an explicit acknowledgement that cancer diagnosis is a serious matter, involving prolonged, aggressive treatments that often result in significant side effects. Denial prevents a patient from being in the right mindset to confront the difficult decisions that must be made to fight cancer. Simply hearing an independent, qualified confirmation that the original diagnosis is accurate helps a patient to sidestep denial.

The merits of a cancer treatment plan depend largely on an accurate pathology report and diagnosis, which are both prone to human error. Numerous cases have come to light of patients who endured severe treatments they did not need, or were not prescribed treatments they desperately needed. Research has shown that a second exam by a specialist may change treatment options for up to 20% of breast cancer patients.[3] Furthermore, a treatment plan is appropriate to the extent it is tailored to the individual patient, which depends on the patient articulating personal values and preferences and becoming informed about the pros and cons of treatment options. Doctors adhere to different treatment philosophies, some more conservative, others more aggressive. The best treatment plan is a delicate balance between personal preferences and a strict adherence to the best possible health outcome. A second opinion helps a cancer patient to substantiate and refine what may be the most important decision of his or her life- the treatment plan.

Adding more ambiguity to cancer diagnosis and treatment is the fact that the economic interests of a doctor, hospital or healthcare plan may not be entirely aligned with the best health interest of a cancer patient. In some cases they may be in direct conflict. First of all, healthcare providers are incentivized to keep a patient “in-network” as their salaries are not paid by referring patients to a more qualified clinic or specialist elsewhere. Physicians are also known to recommend a course of action within their own practice- surgeons advise surgery, oncologists prescribe chemotherapy, etc.[4] Thirdly, healthcare providers have an economic incentive to provide less expensive care, which may result in a patient not being informed of clinical trials or expensive treatments with a minimal chance of success. In the 1990s, HMOs were hit with heavy criticism for “gag rules” found in contracts between them and their doctors, which prevented these doctors from “fully informing patients about options not included in their coverage”.[5] This practice is in clear conflict with the Hippocratic Oath. Some states have since outlawed “gag rules”, but, in essence, a doctor’s recommended plan may not entirely embody a cancer patient’s path to the best possible health outcome.

Federal laws support patients with a legal right to a second opinion. This right combined with the aforementioned reasons and the fact that some insurance plans reduce or eliminate benefits if a second opinion is not secured, make it clear that pursuing a second opinion is the wise choice. In fact, most physicians, if diagnosed with cancer, would do the same.[6]

Nevertheless, many patients do not get a second opinion. Why?

  • They are unaware that a second opinion is an option.
  • They are not informed of the compelling reasons for getting a second opinion.
  • They do not want to “upset” or “insult” the doctor who will be treating them. This perspective may be rooted in the cultural or generational belief that one should not question a doctor’s authority.
  • They want the path of least resistance. Because of emotional distress and lower stamina it may seem “easier” to simply follow the original doctor’s recommendations.
  • They want to remain less certain about the diagnosis, reinforcing denial.
  • They feel that resources and/or time are not available to pursue a second opinion.

If a doctor is threatened or irritated by a patient who wants a second opinion, it is a red flag, a strong signal that the patient should definitely seek additional counsel. Competent, confident physicians are not offended by second opinions.

Grant Achatz, the acclaimed chef of Alinea in Chicago, was diagnosed with stage IV tongue cancer in 2007. Mr. Achatz’s first doctor and three subsequent specialists favored a treatment plan to remove the middle of his tongue, a jaw section and lymph nodes in his neck. For a man whose passion resides in appreciating the subtleties of culinary delights, this was unthinkable. It was his fifth specialist who proposed to put off surgery until after chemotherapy and radiation. Today Mr. Achatz is cancer-free and his tongue prevails as the discerning instrument of his profession and passion. Clearly his quality of life has been preserved as a result, at least partly, of seeking additional expert opinions.

A cancer patient will be confronted by many developments beyond his or her control, yet a patient can control the act of making informed decisions. Getting a second opinion is the first and vital step to becoming duly informed and minimizing future regret. I have never heard about a patient who regrets getting a second opinion. Unfortunately, the window for getting a second opinion is short and may come only once.

[1] Cancer (online issue), October 10th, 2005.

[2] Sherrie Kaplan, PhD, Primary Care Outcomes Research Institute.

[3] U.S. News & World Report (online issue), October 31, 2004.

[5] Oncology Times, May 1996.

[6] Everyday Health, Vincent De Vita, former Director of the National Cancer Institute and Chairman of the Yale University Medical School, “I’ve never taken care of one physician who didn’t get a second opinion.”

 

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Just Diagnosed with Cancer? Tell the World!

Posted on December 9, 2010 by Chris Ferkenhoff

I’ve never been diagnosed with cancer. Not yet, but the most recent statistics don’t give me much comfort. According to the American Cancer Society, as a male I have a 44% chance of developing cancer and a 25% chance of dying from cancer.[1] The statistics don’t tell me at what age. That hand raised in the image you see could some day, not necessarily far off, be mine. Stating, “I’ve just been diagnosed.”

Beyond the statistics, what really makes me uneasy is hearing more frequently about family and friends who have been diagnosed with cancer. In just the last year my brother, uncle and cousin were diagnosed with head and neck, bladder and thyroid cancer, respectively. Perhaps I’m just entering an age group in which people are more prone to fall ill. However, I have yet to receive a “yes” when I ask older generations if there was so much cancer when they were younger. Maybe cancer is more present with today’s technology and ease of communication. Perhaps people are just more open to talking about cancer. I really don’t know. What I do know is that after Nixon’s 1971 declaration of war on cancer with the National Cancer Act, and hundreds of millions of dollars in research, cancer is still the second leading cause of death in the U.S. and the world.

What if you were the one to be diagnosed? Can you even begin to fathom the feeling? I remember asking my brother, who was diagnosed with head and neck cancer, what it was like and he said, “It really sucks, but at least I’m in the U.S.”

How true.  A lot of the world is not so lucky. We tend to think of cancer as a problem of western society, a rich country’s dilemma. We don’t hear about cancer in developing countries, which are still dealing with scourges like malaria, tuberculosis and HIV. Additionally, cancer is a very complex disease requiring substantial knowledge, resources and training to treat it effectively. Without the resources there is no political will, and without the will it’s not a “relevant” problem.

But it is a problem in the developing world. A big problem…

  • In 2008, 70% of the world’s 7.6 million cancer deaths occurred in developing countries, which were also home to 56% of the 12.7 million new cancer cases worldwide.[2]
  • By 2050 it is expected that low-income countries will declare 12 million cancer deaths annually.
  • Cancer mortality already exceeds infectious disease deaths in China.
  • Only 5% of children diagnosed with cancer in poorer countries are cured, compared to 80% in the developed world.[3]

Currently, developing countries account for 85% of the world’s population, but only 20% of the world’s GDP.[4] The dearth of resources to effectively address cancer will increasingly move front and center in the developing world as its population grows, ages, consumes more tobacco and adopts a more westernized diet.

In short, cancer is a worldwide problem, our problem.

At Vencer, we have an idea to combine today’s technology, social media and activism to bring more awareness to the cancer struggle, both in the developed and developing world. We have set up a Twitter account called JustDiagnosed at Twitter.com/JustDiagnosed. It’s quite simple. Any person who recently has been diagnosed with cancer from any location in the world, whether a single mother-of -three in Río de Janeiro or a young boy in Melbourne, Australia, can tweet us (@JustDiagnosed) and we’ll post his or her message for the world to see.

As best as I can understand it, the moment of cancer diagnosis is a tremendous moment, charged with intense emotions, when a person’s life is abruptly thrust into a state of uncertainty, when future plans are derailed and life’s transience becomes more real. The reaction is an urge to yell, scream, kick and gouge at the new reality.

We don’t view JustDiagnosed as a statement of “I’m proud to have cancer”, but as a way for those recently diagnosed with cancer to voice how they feel. To show the world that cancer continues to affect real people, of all walks of life, every day. That cancer does not discriminate. To join their voice with those of others going through this to say, “Enough is enough!”

We hope that JustDiagnosed will also become a way for people all over the world to show their support 24/7 for those diagnosed with cancer by following us at Twitter.com/JustDiagnosed and/or sending us messages of solidarity for the just-diagnosed.

Some people may choose to participate in JustDiagnosed, others no. Cultural and/or generational prejudice still instructs many to feel shame about their diagnosis, which may lead some to tweet us their message anonymously. At the end of the day, it’s a personal choice. If it helps five people to express how they feel and accept the fact of cancer in their life, great. If it helps five million, greater still.

JustDiagnosed is a place to scream, serenade or whisper to the world, “I’ve just been diagnosed with cancer.” In any case, one way or another we need to hear your voice.

[1] American Cancer Society. US National Cancer Institute’s Surveillance Epidemiology and End Results (SEER) Database, using incidence and mortality data for the US population from 2005 through 2007.

[2] Medicalnewstoday.com. Reuters. Kaiser Daily Global Health Policy Report- Henry J. Kaiser Family Foundation.

[3] Medicalnewstoday.com. Reuters. Kaiser Daily Global Health Policy Report- Henry J. Kaiser Family Foundation.

[4] International Network for Cancer Research and Treatment

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Steps Toward “In the Pink”

Posted on October 18, 2010 by Pattie Cagney Sheehan

With a month and a color assigned to all forms of cancer, October indisputably has become known as Breast Cancer Awareness Month, and its color, pink, is currently everywhere. Even the White House became the Pink House for a day.

This year 1.5 million people worldwide will be told they have breast cancer[1], and over 40,000 American women will lose their life to this disease. But beyond generating awareness perhaps we should also take a few moments this month to applaud the efforts being made to make the lives of breast cancer survivors easier. Are we making progress towards bringing breast cancer survivors closer to being “in the pink”? Let’s take a look:

  • Breast cancer is no longer an automatic death sentence. A woman diagnosed with breast cancer sixty years ago had a 25% chance of living ten years after diagnosis.[2] Today up to 98% of women survive at least five years when their cancer is detected early and more than 85% survive ten years.[3]
  • Five-year survival rates have been rising since 1975.[4]
  • After rising from 1975 to 1990, death rates from breast cancer have steadily declined.[5] This is largely attributed to early detection, including self-breast exams and mammography screening, and improved treatment protocols.
  • Breakthrough treatments include the anti-HER2/neu antibody, trastuzumab, for late-stage patients with HER2 over-expressing cancers.
  • Recent research could lead to the first targeted treatment for ‘triple negative’ breast cancer, which tends to affect younger women with high mortality rates.[6]
  • For early-stage breast cancer, breast-conserving surgery (lumpectomy) followed by local radiation therapy is now in many cases a preferred treatment over mastectomy.[7]

In short, there has been substantial improvement in our ability to detect breast cancer early and treat patients.  In fact, just this month, the US Congress announced the first, annual National Previvor Day to call attention to the many individuals who have not developed cancer but have an inherited predisposition to the disease. This day of recognition was brought about in no small part by the efforts of FORCE (Facing Our Risk of Cancer Empowered), a non-profit organization that supports individuals and families affected by hereditary breast or ovarian cancer or a BRCA mutation. For these women, many of whom are young, an informed, proactive approach is showing some promise in preventing breast and/or ovarian cancer. All of  these developments are certainly laudable and with advances in the field of cancer genomics we have good reason for continued hope.

One area in which I personally know there’s been progress is helping breast cancer patients and survivors maintain their self-image as they adjust to the aesthetic changes resulting from cancer treatments such as mastectomy, breast-conserving surgery, reconstruction or hair loss.  For starters, better discussions are taking place before surgery and chemotherapy to inform breast cancer patients about aesthetic options after treatment. This allows patients time to make desired preparations for post-surgery products or wigs that complement their unique style and preference. There is also a more widely accepted holistic approach of treating the patient and not the disease, which allows patients to be more open to assistance outside of clinical treatment.

When today’s products, technology and understanding of breast cancer patients’ and survivors’ needs are combined with a personal consultation, specially trained mastectomy fitters can help these women achieve ideal shape and symmetry, whether surgery was recent or many years ago. In most cases, with a physician’s prescription, a significant portion of the cost of these products is covered by insurance and/or Medicare throughout a woman’s lifetime.

After losing both my parents to cancer I came to understand the anxiety and stress that a cancer diagnosis brings with it. That is why I decided to support cancer patients and survivors in my own way. In 2008 I opened Second Act, a unique place where cancer patients and survivors, who are facing significant changes to their body and self-image, can find the guidance, post-treatment products and inspiration to look forward to the next act of their lives with confidence. We are proud of how we have helped our many clients better understand their options and find the products that best suit them.

It is common for our customers to walk in scared, uncertain and apprehensive. And there is no greater reward than seeing them walk out with their head held high, shoulders back and a smile on their face. In the pink, so to speak.

[1] Voice of America New, October 14th, 2010.

[2] Voice of America News, October 14th, 2010.

[3] Chicago Tribune, October 11th, 2010 .

[4] Cancer Trends Progress Report – 2009/2010 Update, National Cancer Institute, NIH, DHHS, Bethesda, MD, April 2010, http://progressreport.cancer.gov.

[5] Cancer Trends Progress Report – 2009/2010 Update, National Cancer Institute, NIH, DHHS, Bethesda, MD, April 2010, http://progressreport.cancer.gov.

[6] Telegraph.co.uk, Sept 3rd, 2010.

[7] Twenty-year follow-up of a randomized trial comparing total mastectomy, lumpectomy, and lumpectomy plus irradiation for the treatment of invasive breast cancer. New England Journal of Medicine, 347(16): 1233–1241

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Mighty Little Greg vs. the Impervious Medulloblastoma (only this is for real)

Posted on September 23, 2010 by Janice Moore

This is a tribute to a child superhero. The hero is my 11-year-old grandson, Gregory, who now likes to be called Greg. He has always been an inspiration to me. Since the age of two Greg has been visiting hospitals, examined by specialists and working with therapists due to a litany of visual, behavioral and neurological disorders. He has been diagnosed with heterotopia, meaning his right brain is underdeveloped.  Yet, again and again Greg has chosen to disregard his impediments and live a boy’s life. His resolute will to imagine, explore, create and laugh has inspired all those who know him. He’s also an enchanting storyteller. In short, life is bursting inside Greg.

Unbelievably, his dogged determination is now subject to a grave threat. In the spring of 2010 Greg was suffering a period of debilitating migraines. A number of doctors from different disciplines were unable to properly diagnose the reason. An explanation remained elusive until a resident ophthalmologist at the University of California San Francisco Hospital alerted his superiors that Greg’s migraines and deteriorating vision might be due to a brain tumor. At this moment Greg’s transformation into a superhero began. Some superheroes fight evil-doers like Dr. Doom or the Green Goblin. Greg’s archenemy is Medulloblastoma, a particularly aggressive form of brain tumor that originates in the cerebellum, the area of the brain that affects movement and balance. Whenever Medulloblastoma is discovered it is always categorized as Stage IV as it is so hostile. It typically imperils children

Greg’s cancer had been stealthily building up its destructive mass until it declared its presence by causing Greg to vomit and have migraines. Cancer is especially sinister as it is incapable of knowing the havoc it unleashes on patients and their families and thus cannot be called upon for mercy. It also does not care whom it affects or when, such as a little boy who has already faced a battalion of less menacing health villains. What kind of disease is solely driven to claim the life of a child?

Like most superhero struggles, Greg has been knocked down repeatedly during his uncertain path to victory. He has undergone brain surgery and six weeks of concurrent radiation and chemotherapy and has just started an additional eleven months of continuous chemotherapy. Greg has lost vision in his left eye and his hair. He suffers fatigue and imbalance and any infection could be life-threatening. Nevertheless, Greg has not complained during his daily trips to the hospital, even though he told me it was scary and hard to stay still during radiation.

Greg-

You are so brave. I want you to know all that you have taught me. You accept your treatments as necessary to beat Medulloblastoma, but it breaks my heart to see you suffer from reactions to these treatments and medications. I so want to take this burden from you. Our world has been turned upside down and yet you have this amazing ability to put all the hard stuff behind you and enjoy the day. I so admire your cheerful attitude and total acceptance of life. Every day you teach us to live in the moment and find delight in the things that matter- like being together, laughing and having fun. You give love again and again. I’ve watched you draw people in by your laughter and openness. Life springs from you and who wouldn’t want to be a part of that. You have that rare gift of only being yourself. When I checked in at the hospital the lady at the reception desk said, “Oh, I know Greg. He is such fun to visit. He has great stories to tell.” You are a person who is gifted with the ability to seize the moment.  When I’m around you I feel lighter and happier.  Even when I’m not around you I’m more loving to everyone I meet.  This is what I have learned from you. You really are my superhero.

In the past couple of months I have been able to spend more time with Greg. I look forward to his phone calls. I am thrilled when I hear him say, “Hi, it’s me! When are you coming over?” He greets me at the door, with a big smile and says, “Sit down, this is so funny and you are going to love it.” I giggle as I watch him laugh out loud at something silly that Sonic and Tails have done. When I watch Greg put on his Batman costume or pretend to be Johnny Thunder or Spiderman I can’t help but think he’s striving to find his superhero to beat Medulloblastoma. The doctors say Greg has a 80% chance of prevailing, but no child wins when Medulloblastoma returns to fight again.

Here we are in September, Child Cancer Awareness Month, and I wish to recognize the thousands of children who are looking for their superheroes to overcome their cancerous foes, as well as their families who yearn to see their children suffer no more. It’s absurd that sometimes it takes a child fighting cancer for us to see what life is all about.

With my love and affection for all the superhero children,

Grandma J

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Fight Cancer: Why a Personal Cancer Patient Advocate?

Posted on August 6, 2010 by Chris Ferkenhoff

Just after dropping your kids off for soccer practice you check your voicemail. There’s a message from your doctor requesting you to come in to discuss results of a recent test. You are calm, thinking about preparations for the family vacation as you wait for the doctor in the examination room. The doctor has barely entered the room with both feet before he tells you that he has some “unfortunate news”. You have cancer.

It can happen just like that.

Few persons, if any, are ever prepared to receive a cancer diagnosis. It has been described as being hit by a heavyweight boxer and awakening in a strange world where life is suddenly not the same. What does this new world have in store for you? What about your family? You are overwhelmed by emotions, uncertainty and questions, questions, questions. The doctor reclaims your attention and begins to speak about next steps– surgery, chemotherapy, radiation treatment– and you have yet to exhale.

Though still inconclusive, recent research supports the benefits of stress reduction in preventing the development or recurrence of cancer. It is thus a cruel irony that cancer diagnosis usually leads to more stress by disrupting a patient’s life, even beyond health concerns. Finances, employment, family, long-term goals, insurance plans, and more all need to be reconsidered in light of the diagnosis. Furthermore, the healthcare system is difficult to navigate, the learning curve is steep and yet the race to live is on.

Besieged by new information, unanswered questions and so much to organize, a newly diagnosed cancer patient may become overwhelmed, unsure where to begin. The first few steps are often the most important and a good place to begin is by contacting a personal and independent cancer patient advocate.

Although every cancer patient is unique and will, and indeed should, fight cancer in an individual way, there’s no need to reinvent the wheel of resolving non-medical challenges. An experienced cancer patient advocate will provide a proven service framework to efficiently overcome challenges encountered outside of the hospital. By delegating numerous tasks to a personal patient advocate a cancer patient can reduce stress, preserve quality of life and focus on healing.  The tasks performed by a personal cancer patient advocate may include, among others: second opinion guidance, reviewing health insurance plans, researching clinical trials, designing a fundraising strategy and locating credible providers of services like legal, childcare and transportation. These services enable the patient, and his or her family, to devote limited time and money to the more urgent medical challenges.

A cancer patient will benefit most with a personal patient advocate as part of his or her “fight” team as soon after diagnosis as possible. It is also prudent to find a patient advocate who is wholly independent of any hospital, physician’s group or insurance company. The structure of the current healthcare system and its incentives do not necessarily advance a patient’s best interest or respond to individual needs. A family member may not be the best choice for patient advocate as it is often difficult for family to consistently employ the necessary objectivity in assisting a patient. Also, family members may be unable to fulfill the advocate role from diagnosis through treatment, prolonged as it may be. It often works better for family to provide loving support and not be distracted by managing the daily details. An independent cancer patient advocate will be unequivocally aligned with the best interests of his or her patient.

By managing a cancer patient’s non-medical challenges a personal patient advocate enables the patient and his or her healthcare team to focus on the medical challenges. Cancer diagnosis sets off a vital, frightening and often confusing time in one’s life that requires a sound game plan. Ultimately, a cancer patient advocate’s success is realized when a patient has no regrets and has become his or her own best advocate.

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