Thyroid Cancer Patients: Why You Need to Own Your Cancer

An Interview with Peter Edelstein, M.D

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Dr. Peter Edelstein, surgeon, patient advocate, and author of "Own Your Cancer". Peter Edelstein, MD

A passionate cancer patient advocate, Peter Edelstein, M.D., FACS, FASCRS, is a double-board certified surgeon and a member of the Surgical Faculty at the Stanford University School of Medicine. After years of experience partnering with cancer patients and their loved ones, Dr. Edelstein has determined that an important part of cancer treatment is for patients is to "stay in control of your cancer," and "own your cancer." This is the message of a new book coming out in 2014. In this interview, Dr. Edelstein shares his thoughts about how cancer patients -- including those with ​thyroid cancer -- can be empowered.

Question: Your "Stay in Control of Your Cancer" message is so empowering. Can you please tell us what inspired you to develop it; what set you on your mission?

Dr. Edelstein: First as a medical student, then as a surgical intern, resident, fellow, and finally as an attending surgeon, I was always disturbed to see independent people suddenly surrender control over their lives to the health care system upon learning that they had cancer. After all, prior to their cancer diagnosis, these people had successfully worked jobs and built careers, raised children, and addressed all of life's challenges both large and small. Then with three little words, "You have cancer," they completely surrendered their independence and passed all decision-making authority over this life-threatening disease to strangers. It really bothered me.

Question: Did you ever have a loved one who battled cancer?

Dr. Edelstein: When I was 18, my mother found a lump in her breast and underwent a mastectomy for breast cancer.

Back then, the finding of metastatic breast cancer in a single lymph node was usually a death sentence. That was a very long week for us all, and we celebrated her lymph nodes being cancer-free. More recently, my father was successfully treated for prostate cancer. So I am quite familiar with the fears and angst that come with loving someone with cancer.

Question: How can patients avoid, as you term it, falling into the one-size-fits-all plan of action?

Dr. Edelstein: Just as no two people are the same, no two cancer patients are the same. Each cancer patient and each cancer are unique. However, it is faster and, frankly, easier for the health care system to view all cancer patients similarly. In order for cancer patients to ensure that their care is appropriately tailored to meet their unique medical, personal, and emotional needs, they must maintain their independence and authority over their lives - they must "own their cancer." Patients and families who actively participate in the critical phases of their cancer care will avoid the one-size-fits-all treatment pathway.

Question: You talk about "the cancer machine" - can you please explain what you mean by that, and how patients can avoid getting swallowed up?

Dr. Edelstein: With so many cancer patients, cancer types and stages, and cancer treatments, the "cancer machine" (the doctors, nurses, therapists, facilities, and equipment involved in cancer care) is overly stressed and stretched thin. Thus, the cancer machine readily accepts passive cancer patients who surrender all decision-making authority simply because it is easier and faster to tell patients their cancer stage and prognosis and prescribe their treatment plan than it is to explain the meaning of their cancer stage, discuss their prognosis, and partner on a treatment plan.

To avoid becoming a victim of the cancer machine, patients and their loved ones must from the outset play an active role in physician partner selection and accept responsibility for learning and understanding the basic critical issues surrounding their cancer.

Question: After recovering from the initial shock of a cancer diagnosis, what's the very first thing a patient should do?

Dr. Edelstein: Newly diagnosed patients must first decide to own their cancers, not allow their cancers to own them. Cancer ownership does not mean the patient does not fear dying from cancer or the side-effects of treatment.

Cancer ownership means that the patient chooses to remain in charge of their life, a life that now includes cancer. Cancer owners accept that there are now things to learn and decisions to be made to determine with whom and how best to fight the malignancy. Moving from "cancer victim" to "cancer owner" is the most important first step a newly diagnosed person can take.

Question: What are the next essential, proactive, non-passive steps to take after receiving a diagnosis?

Dr. Edelstein: Two key initial responsibilities of newly diagnosed cancer patients are to learn the few critical basics about their specific cancer and to actively select cancer doctors who are a "fit" for them. Yes, cancer is overwhelming, but like most complex issues, limited basic information drives most options and decisions. Cancer patients and their loved ones who understand their specific cancer type and stage are able to actively participate in major care decisions. And cancer owners should never passively accept a doctor who is assigned or referred to them. Patients and their loved ones must actively select the cancer physicians who will serve as partners on their journey.

Question: What should the patient do if his/her doctor says - as many thyroid cancer patients, in particular, often hear - "Don't worry, you have the GOOD cancer?"

Dr. Edelstein: Certainly there are "better" cancers to have, meaning that relative to all malignancies, these cancers tend to be more curable. Still, the words "good cancer" often provide little or limited comfort to the new cancer owner, as even these cancers require sometimes challenging treatments, and "good cancers" can still be incurable. Thus, this news should be seen for what it is - the recognition that cancer has a more favorable prognosis (outcome) if treated aggressively.

Question: Not all doctors are patient advocates like yourself. How can patients recognize and seek out a doctor who, like you, won't let them fall into "the cancer machine?"

Dr. Edelstein: Cancer patients and their loved ones should truly interview physicians. Simply by asking questions and listening to the tone and style of the answers, patients can rapidly get a feeling as to whether a cancer doctor will be a good "fit" and partner for them. Does the doctor regularly care for patients with their type and stage of cancer? Is the doctor-patient? Clear? Interested in their family? Are questions welcomed? Patients know themselves, and family and friends know the patient. Together, they can find physicians who are truly a "fit" in terms of knowledge, experience, personality, and style.

Question: In your opinion, what are the three most important concepts of cancer that patients and their families need to understand in order to fight it and put it in remission where it belongs?

Dr. Edelstein: There is a natural order to three important, basic concepts that cancer owners and their families must and can understand about their cancer. First, they must appreciate the origin of their cancer; that is, what type of cancer they have (breast, lung, colon, pancreas, esophagus, etc.). Next, it is critical to understand their cancer stage, meaning all the sites where the cancer is now present within their body. Imaging studies (X-rays, MRIs, CT scans, etc.) play a big role in determining a person's cancer stage. Finally, based on an understanding of the cancer type and stage, patients, and loved ones will be able to learn about and evaluate treatment options and actively participate in care decisions.

Question: Humor is obviously one of the potent weapons in your doctor's bag. How can patients hold on to their sense of humor, and why is it so important to do so?

Dr. Edelstein: Owning your cancer means not allowing your cancer to own you, to take away who you are. You are still the same person the day after your cancer diagnosis as you were the day before. Don't get me wrong - I understand that with the diagnosis of cancer comes great fear for the patient and their family. The patient and their loved ones, along with their physician partners, likely have months of battle ahead of them. Holding on to their sense of humor not only demonstrates true ownership of their cancer, but laughter provides cancer patients, their families, and their friends an emotional outlet, a well-deserved "time out." Laughter relieves stress and reunites and re-energizes patients and their loved ones.

Question: How important is it to seek out a second opinion, and can you offer expert tips on how to find a doctor as competent and caring as yourself?

Dr. Edelstein: I recently spoke with a man whose middle-aged wife is battling recurrent breast cancer. When I asked if they had sought a second opinion, he quietly shared that they were "afraid to offend their oncologist." News flash: this is your cancer and your life, so accepting a treatment recommendation simply to avoid offending a doctor is ridiculous. Second news flash: any doctor who is offended by your seeking a second opinion should not be your doctor. True cancer physician partners are comfortable with second opinions, as they most often support their initial recommendation. The key to finding the right doctor for you is to speak with physicians, listening not just to what they say but also to how they say it. Find experienced, knowledgeable, caring physicians whose styles and personalities "fit" your style and personality and who will truly partner with you.

Question: Are there any nutrition and lifestyle guidelines that thyroid patients and their loved ones need to be aware of in preventing and fighting cancer?

Dr. Edelstein: For all of us, maintaining a healthy immune system is important both in preventing cancer development and in remaining healthy during treatment should we get cancer. Our immune systems need vitamins, minerals, and other factors which are easily provided by fresh vegetables and fruits in our daily diet. In addition, adequate sleep and regular exercise support immune health. Specific cancer types may be linked to specific risk factors. Thyroid cancer, for example, is more likely in people exposed to radiation in childhood (usually for medical purposes). For thyroid, breast, colon & rectal, skin, prostate, and many other cancers, early detection of pre-cancerous or cancerous tumors can prove life saving, so everyone should take responsibility to follow recommendations for regular physical exams, mammograms, colonoscopy, and other screening tests.

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Peter Edelstein, M.D., FACS, FASCRS is a surgeon, and author of the upcoming book, Own Your Cancer: A Take-Charge Guide for the Recently Diagnosed and Those Who Love Them, which will be published in the spring of 2014 by Lyons Press. Dr. Edelstein has delivered hundreds of interactive lectures both for the medical community and the general public during his training at the University of Chicago, the University of California, and the University of Minnesota, and as a member of the Surgical Faculty at the Stanford University School of Medicine.
Website: www.OwnYourCancer.com
Twitter: @OwnYourCancer
Facebook: OwnYourCancer

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