“Cancer is not a straight line. It’s up and down.”Cancer treatments fail. It’s that simple. Though patients enter treatment with great hope, that hope may be dashed when either further evidence of disease or proof of recurrence is discovered. Sometimes the failure is apparent immediately, as was the case with my wife, Lori’s, lumpectomy. Other times the disease reappears months, years, even decades later. Evaluation of the effectiveness of your cancer treatment depends upon the modality used.
If your initial treatment failed to cure your cancer, than you have reached another critical signpost along your journey: The need to modify your treatment plan to include new modalities of care. It’s a bit like hitting the reset button and starting the game over. This can be a particularly difficult time for many patients because the preferred treatment option has proven unsuccessful, often triggering new waves of anxiety and doubt.
Many patients enter a midpoint in their journey with cancer. It is what author and ovarian cancer survivor Susan Gubar defines as the “middle stage.” Writing in a June 5, 2014 article in the New York Times, Gubar stated:
“For some of us, there is a middle stage in this journey. Because of advances in cancer research and the efforts of dedicated oncologists, a large population today deals with disease kept in abeyance. The cancer has returned and has been controlled, but it will never go away completely. Like me, these people cope with cancer that is treatable for some unforeseeable amount of time. Chronic cancer means you will die from it—unless you are first hit by the proverbial bus—but not now, not necessarily soon.”
The word “chronic” resides between the category of cured and the category of terminal. It refers to disease that is not spreading, malignancy that can be arrested but not eradicated. At times, the term may seem incommensurate with repetitive and arduous regimens aimed at an (eventually) fatal disease. For unlike diabetes or asthma, cancer does not respond predictably to treatment.
Still, quite a few patients with some types of leukemia or lymphoma, prostate or ovarian cancer live for years. While in the 1970s, 10 percent of women with metastatic breast cancer survived five or more years, today up to 40 percent do. Chronic disease may lack the drama of diagnosis and early treatment; even friends can get bored by mounting details. Its evolution does not conform to the feel-good stories of recovery that most of us want to read. But neither does it adhere to the frightfully degenerative plot of quickly advancing tumors.[ii]
When you hit these milestones, it is time to be kind to yourself: a time to express your disappointment without relinquishing your hope. You will be traversing a new path on your journey, but first, you must understand how the additional knowledge acquired to date about your condition impacts your staging, prognosis, and recommended treatment options. Your physician should provide this information, as well as recommended modifications to the treatment plan.
Now’s the time to take out your compass and reassess the direction you are headed. It is essential that you go through an appropriate level of due diligence with your doctor regarding the next phase(s) of treatment. Just as you inquired about efficacy, side effects, treatment duration, and other factors prior to your first course of treatment, you need to repeat the process again now. Three very important questions to consider are:
Just as you asked many questions about your initial treatment, so, too, must you feel fully informed about the next steps in your journey. In addition to understanding the fundamental nature of the recommended treatment, you may also wish to ask your physicians the following questions:
It may be helpful to then take a few days, do your own research, talk with your caregiver, and then come to the most informed decision possible. Regardless of the outcome, you will feel as though you entered this phase of treatment with a solid understanding of its probable outcome, side effects, and costs.
Lori endured a second major surgery—bilateral mastectomies. The difficulty of the recovery was far more than Lori or I anticipated.
(IN LORI’S WORDS) Once I had a chance to digest the news about my initial pathology, I knew I needed more surgery—a mastectomy. I also knew that my type of cancer was also more likely to be present in the opposite breast and to evade early detection by imaging. So, I opted for bilateral mastectomies. It would take coordination between my breast surgeon and my reconstructive surgeon, which even under the most optimal circumstances can take several weeks. I decided to allow myself my hour of sadness, but then take that energy, become my own advocate, and push hard to get things done as soon as possible.
While waiting for my second surgery, I knew I needed to take care of my spiritual, psychological, and physical needs. I packed much of our house to get ready to move, took time to exercise, read my Bible, talk to friends. Mother’s Day was during that time, and all I wanted was to see my sons, so my husband arranged for them to fly home from California and Wisconsin for the weekend. We talked, went to church, and even took in a baseball game. My surgery was scheduled for early the next week.
The day of surgery was also the day before our scheduled move. My sister Janet, a nurse at Duke University Medical Center, came the night of surgery to help with my care and allow John to be with the movers the next day. She stayed with me those first few days when I felt so physically helpless. She brought me “home” to our new house (and new beginning for me) where we were greeted by a chaotic setting of John supervising the movers. Her calming presence, encouragement, and hands-on care were invaluable. I will always be grateful she was there by my side. My brother Chris and his wife Gail took the second watch and stayed for several days, helping me as I struggled to gain strength, as well as helping John unpack our new house. They all dropped their jobs, families, and plans to come and help. Having my strong support system was a tremendous blessing, and I strongly believe it was a key to my recovery.
The final pathology report came out. I held my breath, said a prayer for strength, and waited on the other end of the phone while Dr. V. read me her findings. There had proved to be many spots of cancer creeping through my breast—that was the scary news. But this time there was excellent clearance around the tumor—the margins were negative! A genetic test done to predict my recurrence was also low—so I was not going to need chemotherapy. My risk could be reduced by taking a pill each day to block estrogen.
I knew I had found a silver lining—and a new beginning. Three weeks later I was back at work, now armed with a personal story to complement those of my patients. We would help one another on this journey.
[i] Elizabeth Edwards, BrainyQuote, http://www.brainyquote.com/quotes/authors/e/elizabeth_edwards.html
[ii] Gubar, “Living with Cancer.”
As more and more cancer patients rely on complementary therapies to help them manage their disease, the question inevitably arises as to the appropriateness of such practices. The number of integrative modalities available to patients today is mind-numbing – ranging from energetic healing to Chinese herbal preparations. Yet despite the almost infinite array of offerings, there are some basic rules that can help keep cancer patients safe while exploring forms of healing that transcend western medicine.
Rule #1: Integrative treatments are no substitute for proven medical interventions that control or cure cancer. This first rule is inviolate – consider it the one red-line that you should never cross. Therefore, you can eliminate the thought of “alternative” medicine, and replace it with integrative or complementary medicine.
Complementary therapies do not replace or supplant traditional methods of managing cancer. Rather, they are intended to provide additional benefits to the cancer patient, which may vary from reducing the adverse side effects of treatment to attempting to bolster the patient’s immune response. They are thus intended to complement standard oncology practices.
The term alternative therapies suggest that these interventions are done in lieu of medical treatment—an obviously risky decision, particularly if there are effective treatment modalities available for your cancer. Yet, even some of the brightest people on the planet have chosen to forgo standard medical therapy in pursuit of alternative treatment:
“Giving up conventional medicine in favour of alternative treatments, tops the list of fatefully wrong decisions. Whenever this has hastened the death of a famous individual, like recently Steve Jobs, the world press briefly takes notice only to revert to ‘business as usual’ a few days later. And ‘business as usual’ means all too often the promotion of quackery to desperate patients. Thankfully, most cancer patients do not abandon conventional oncology but use alternative treatments as an adjunct to it.”[i]
One of the preeminent experts on complementary medicine, Barrie Cassileth, PhD, is crystal-clear in her opinion regarding the role of alternative medicine in cancer care—there is none! Dr. Cassileth, who is the founder of Memorial Sloan-Kettering’s integrative medicine program, offered these thoughts in an interview with Medscape journalist Gabriel Miller:
“The most common misconception and misperception is that there is a relationship between alternative therapies and complementary therapies, which are part of integrative medicine. There are no viable alternatives to mainstream cancer care, but there are many products and services that are sold to the public, to the naive public, calling themselves alternative medicines or alternative therapies….All of this is bogus. There are no viable alternatives to mainstream care, but a lot of people are getting wealthy pushing alternatives. In other words, they say, “Don’t bother with mainstream treatment; you don’t have to get surgery or chemotherapy or whatever. Come here, and we will treat you.” With something that turns out to be utter nonsense. What happens to these patients…they usually die because they failed to get treatment when it was needed. That is alternative medicine. No one who is a reliable person at a reliable institution would have anything to do with alternative medicine, also called quackery.”[ii]
Most physicians would agree with Dr. Cassileth…so don’t expect your doctor to turn cartwheels if you elect to forgo traditional medical care in favor of alternative medicine. It should be noted that, despite the significant difference between complementary and alternative medicine, they are often spoken of together as differing from traditional or allopathic medicine.
Rule #2: Complementary treatments should be evaluated relative to their ability to improve quality of life – not eliminate or control disease. Significant research data supports the assertion that certain complementary modalities appear to have a profoundly positive effective on selective measures of quality of life (QoL).
he degree to which complementary therapies are effective depends upon one’s expectations relative to treatment outcomes. If you are engaging in such therapies in an effort to ameliorate tumors that are resistant to standard medical therapies, chances are you will be disappointed by the outcome. However, if your expectations are more modest and focus primarily on improved quality of life, complementary therapies may prove to be of significant value to you. Since quality of life can affect clinical outcomes over time, the value of complementary therapies may be substantial:
Clearly, a significant level of research exists demonstrating the effectiveness of selective complementary therapies within the appropriate context. Before engaging in complementary therapies, however, you need to also understand the potential dangers associated with them.
Rule #3: Do not ingest anything without discussing it first with your physicians. You probably won’t get into too much trouble with non-invasive modalities such as acupuncture, massage therapy, aromatherapy…but ingesting unknown substances is a wholly different matter.
CAM therapies are often marketed as “natural alternatives” to medicine—leading some patients to believe that they are without risks. While prayer, meditation, massage, and other forms of therapy that do not involve the ingestion of any type of compound are generally devoid of risk, other therapies cannot make this claim.
Mary Egger, RN, advises patients, “If it is something that they ingest, they need to check with the doctors first because it could be counter-productive to treatment.” There are three principal dangers when ingesting a diverse range of CAM therapies: 1) There can be a direct reaction to the compounds; 2) the compounds can negatively interact with chemotherapy, radiation therapy, or other medicines; 3) the CAM compounds/herbals can be contaminated.
CAM products can be very biologically active. In other words, “Direct adverse effects such as allergic reactions, gastro-intestinal complaints, photosensitivity, skin reactions, and hepatotoxicity [toxic and potentially damaging to the liver] have been reported as side effects to CAM commonly used by cancer patients. For example, Echinacea, used to bolster immunity, has caused allergic reactions including anaphylaxis; St. John’s wort, used to treat depression, may cause photosensitivity; black cohosh, used to improve menopausal symptoms, may cause gastrointestinal upset and hepatotoxicity.”[vii]
As more and more cancer patients turn to CAM, the number of adverse reactions increases proportionately:
“Side effects and interactions with chemotherapy are being increasingly reported with herb use, and concerns about potential interactions of complementary modalities with biomedical and pharmacologic treatment, safety, efficacy, cost, and establishment of scientific evidence are rising. Given that many botanical supplements lack basic and clinical research documentation and are not closely regulated, many supplements may be contaminated. Toxicity may result from high concentrations of active ingredients in a supplement versus the native form of the natural product. Moreover, there remains a lack of reliable dosage guidelines. Nearly two thirds of individuals reporting use of natural supplements are unaware of drug interactions and information concerning adverse effects, making the assumption that a lack of such information implies safety. Studies on the effects of antioxidants on cancer therapies have yielded mixed results, with some reporting interference, others noting benefits, and most suggesting no significant interaction. Still, caution is recommended for people undergoing treatment with chemotherapy or radiation because it has been proposed that the use of high-dose antioxidants may interfere with the effectiveness of treatment.”[viii]
If you think these CAM-drug interactions are rare, you are wrong. Researchers state that more than 25% of cancer patients who are receiving chemotherapy are likely at risk for a significant adverse reaction.[ix]
Lori Lindstrom, M.D. notes: “When I initially review a patient’s medication list, I first make sure they have listed all prescription and non-prescription medications, as well as vitamins, herbs, and supplements. The fish oil they take may be dangerous because it increases their risk of bleeding; the anti-oxidant Vitamin C can potentially interfere with the intended effects of radiation. The soybean estrogen may stimulate their breast cancer to grow. In all of these situations, seemingly innocuous supplements can potentially cause harm. My best advice is to not to take any supplement, unless you absolutely need it, while undergoing cancer therapies.”
As if these dangers were not enough, there are also safety concerns related to the manufacturing processes for CAM products. Many herbal preparations are manufactured in foreign countries with far less stringent manufacturing standards to protect product safety and purity. As a result, so-called all natural products may be contaminated with lead, cadmium, arsenic, or other toxins. Even in the United States, oversight of CAM products pales compared to the scrutiny applied to traditional pharmaceutical manufacturing.
The sheer number of herbal remedies marketed makes the challenge of validating their effectiveness, purity, and safety almost Herculean. Dr. Edzard Ernst, emeritus professor at the University of Exeter, makes this point abundantly clear:
“There are about 6,000—that is a really rough estimate—different herbal remedies, and each of them has its own dangers, its own risks. But generally speaking, the risks are, of course, toxicity of the herb itself, and then interactions with prescribed drugs. Here we only know the tip of the iceberg because research into this area has only just begun. We know that herbs have the potential to interact, but we don’t know enough about the subject. If we are dealing with Asian herbal mixtures in particular, we know that many of them are contaminated and/or adulterated—adulterated with prescription drugs and contaminated, for instance, with heavy metals, which obviously can cause harm. The biggest danger of all is that these supplements might be used as a true alternative to effective treatments. In this situation, a harmless but ineffective remedy can almost immediately become life-threatening.”[x]
Rule #4: Just as you were discerning about your medical doctor, be equally discerning when selecting an integrative provider. There are legitimate, certifying organizations that convey Board certification or comparable credentials to acupuncturists, massage therapists, Chinese medicine practitioners, and others within this field. However, there are also charlatans!
I have attended meetings where the virtues of miracle cures were peddled to unsuspecting patients with merciless conviction. And when I challenged these hucksters—demanding valid proof of their claims, I was routed out of the audience with great haste. In one case, a death threat followed.
What I found most surprising was the degree to which intelligent, rational individuals were buying into this nonsense. It spoke volumes about their extreme vulnerability and desperate need for hope.
If you think you are immune to the “charms” of a quack, think again. Even the most astute, well-educated patients have fallen prey: “Psychopathic traits of superficial charm and pathological lying, when exhibited by a quack practitioner giving cancer patients the very words they want to hear such as “cancer cure,” can lead the vulnerable patient into their grasp.”[xi]
Complementary therapies can have a profoundly positive impact on cancer patients when expectations are appropriate and the therapies are properly utilized. There are numerous sources of trusted information that you may wish to consider before engaging in complementary therapies, including:
It’s important that you feel comfortable discussing complementary medicine with your physicians. Research indicates that “the majority of CAM use is not being communicated to providers.”[xii] Since we have seen how certain CAM therapies can interact with traditional treatment modalities or cause harm in other ways, this reluctance to share such information with your physicians must be overcome.
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IF YOU ARE INTERESTED IN MORE INFORMATION ON THIS TOPIC, YOU MAY WISH TO READ:
After You Hear It’s Cancer: A Guide to Navigating the Difficult Journey Ahead,Rowman & Littlefield, Publisher. Here is a link to the book on Amazon.com.
[i] Edzard Ernst, “Alternative Treatments for Breast Cancer,” European Journal of Clinical Pharmacology 68 (2012): 453, http://paperity.org/p/19734319/alternative-treatments-for-breast-cancer.
[ii] Gabriel Miller, Barrie R. Cassileth, and Edzard Ernst, “Asking the Experts: Complementary and Alternative Medicine and Cancer,” Medscape, September 2, 2014, http://www.medscape.com/viewarticle/830553_print.
[iii] Perlman et al., “Prevalence and Correlates,” 34.
[iv] National Center for Complementary and Alternative Medicine, “Cancer and CAM: What the Science Says,” NCCAM Clinical Digest (October 2010).
[v] Ibid.
[vi] Ibid.
[vii] Smith et al., “Why Do Some Cancer Patients,” 3.
[viii] Anderson and Gill, “Use of Complementary Therapies,” 239.
[ix] Smith et al., “Why Do Some Cancer Patients,” 4.
[x] Miller et al., “Asking the Experts.”
[xi] Smith et al., “Why Do Some Cancer Patients,” 3.
[xii] Mao et al., “Complementary,” 12.
“When you hear the word ‘cancer,’ it’s as if someone took the game of Life and tossed it in the air. All the pieces go flying. The pieces land on a new board. Everything has shifted. You don’t know where to start.” —Regina Brett[i]
A diagnosis of cancer can be overwhelming, but knowing a few basic things can help make the journey ahead far more manageable. Here are five key things you should know if you or a loved one has recently been diagnosed with cancer:
There are many more steps to transforming an arduous journey into a manageable one. What I’ve outlined here are five of the most basic. If you would like to read more, I would strongly encourage you to read: After You Hear It’s Cancer: A Guide to Navigating the Difficult Journey Ahead.
The book is available at Amazon.com (http://www.amazon.com/After-You-Hear-Its-Cancer/dp/1442246251/ref=sr_1_3?ie=UTF8&qid=1423064996&sr=8-3&keywords=john+leifer#) or through the publisher – Rowman & Littlefiel (https://rowman.com/ISBN/9781442246263).
I would welcome your questions or comments.
[i] Regina Brett, BrainyQuote, http://www.brainyquote.com/quotes/quotes/r/reginabret586752.html.
There is a fascinating article in a recently published, special edition of Forbes detailing efforts by Novartis to become the leading force in cancer therapeutics. The article begins with a powerful and poignant story in which a breakthrough therapy brings a new lease on life to a young girl (as well as numerous other individuals who were involved in an early-stage trial).
No one, with a shred of compassion, would find anything but joy in the revelation that great strides are being made in treating previously devastating cancers; and there need to be incentives in place for corporations to pursue such work – since our economy is not driven by altruism. But there are troubling aspects to this story as well…as evidenced by comments made to Forbes by Novartis CEO, Joseph Jimenez.
As Forbes notes, cancer drugs currently account for just under 20 percent of Novartis’ total sales – bringing in $11.2 billion annually. Now, according to Mr. Jimenez, “He’s ‘doubling down’ on the cancer business” – an expression I would normally reserve for a bet at the blackjack table.
Where’s the proof? “In April he did a deal that essentially traded Novartis’ unprofitable vaccine and consumer businesses and up to $9 billion in cash to GlaxoSmithKline in return for Glaxo’s cancer drugs, which currently generate $1.6 billion sales but which Jimenez says include three pills he can turn into $1 billion sellers.”
From a profit-making perspective, Mr. Jimenez strategy to become the leading force in the emerging field of personalized medicine seems astute. He is, after all, a “Marketer by trade who, until he came to Novartis in 2007, managed brands like Clorox and Peter Pan Peanut Butter before running the North America business for Heinz, the ketchupmaker.”
But we are not talking about whitening our clothes, satisfying a sweet tooth, or putting a topping on a burger. We’re talking about life and death stakes for millions of cancer patients in the future.
As Mr. Jimenez executes his market strategy and potentially gains increasing clout in controlling what may prove to be true cures for cancer, what will prevent Novartis from leveraging its power over the lives of cancer patients by raising the prices of newly developed products to the very edge of what the market can bear…and is there a precedent for concern?
Novartis already produces a “miracle drug” known as Gleevec. It has made a life and death difference for some patients. Forbes notes, “Patients stay on it for years, and it is so valuable that Novartis has quadrupled its annual price from $24,000 per year in 20001 to more than $90,000 today.” The article goes on to state: “What the marketers thought was a $400 million drug, Jimenez notes, is now a $4.6 billion one…”
What will Novartis do in the future…what is morally right or what the market will bear? Mr. Jimenez, I’m truly grateful for the research you are funding, but wonder who will be whispering in your ear, “Are we doing the right thing for both our shareholders and our patients?